A guide for women with

early breast cancer

A guide for women with early breast cancer was pr pared with input from the
arional Brea t an er entre's Early Brea t aneer onsum r Information
Revi w r up, and produ ed by the ational Breast ane r nrre:
92 Parramatta Road Camperdown, ydney, Au tralia
Lo ked Bag 16 amperdown W 1450
Telephone: (02) 9036 030' Fax: (02) 9036 3077; Web ite: www.nbe .org.au.

© ati nal Breast ancer entre 200

Reprinrcd 2005

I B Print: 1 74 127 12 nline: 17412701 9

CIP: 616. 99449

Thi work i copyrighr. Apart from any lJ ea permilred under rhe opyright Act 1968,
no parr may be reproduced by any proce wirhout pri r wriHcn perm is ion from the
ational Brea r an er enrre. Reque I and enquiries on erning reproduction and
righrs hould be addressed co rhe pyrighl Offi e, ati nal Br a t an er enrIe,
Lo ked Bag l6 anlperdown W 1450 Au tralia. Web ire: www.nbc.org.au
Email: dir nb c. .a

Note to Reader:
While every effort has been made to ensure the information in
A guide /01' women with early breast cancer is as up-to-date as pos ible, the
detection, diagno is and treatment of breast cancer is comple and
constandy changing. Reader are advised to eek expert advice when faced
with pecific problem . This book i intended as a guide only and hould
not be u ed as a substitute for professional advice.
L--

This b ok i de igned to repla e All about early breast cancer, a booklet produ ed
by the National Brea t aneer enrr in 1996.

Copies of this book can be ordered through:

The aneer Helpljne: 'Jelephon 13 11 20
The National Br ast aneer enrre: '(elephone 1800 624 97
This b ok can al 0 be downl aded fr m the ati nal Breast an er entre
web ire: www.nbec.org.3U
Contents
Acknowledgements lX

Key mes ages xi

Introductioo XIV

hapter I What is early breast cancer? 1

• How common i brea [ cancer?
• How cl c breast ancer develop? 2
• What doe my brea. t look like on the inside? 4
• What causes br a [ cancer? 5
• How is brea t cancer found? 6
• How i a diagno i of brea t cancer mad 6

hapter 2 What does this diagno i mean for me? 9

• Receivi~ng a diagnosi. of early breast cancer 9
• Will I die from brea t cancer? 10

hapter 3 Treatment for early breast cancer 12

• Brea t urgery 13
• Radiotherapy 13
• y temi treatmen 15

ha pt r 4 Pathology 16
• What i a pathology report? 16
• rages of brea t ancer 19
• What make breast cancer likely [0 come ba k
or to pread? 20

iii
Chapter 5 Deciding about your treatment 22
• Your treatment team 22
• Getting a second opinion 26
• Making decisions about treatment 26
• Using a professional interpreter 28
• Questions to help you to decide about ({catment 29
Chapter 6 Breast surgery 31
• Introduclion to brC3St surgery 31
• \'(fhat is the evidence aboul the effectiveness of
breast surgery? 32
• Breast conserving surgery 32
• MastectOmy 39
• The experience of having breast surgery 45
• Surgery 10 remove lymph nodes 45
• Questions you may want to ask about
breast surgery 51
Chapter 7 Radiother-apy 52
• Introduction to radiotherapy 52
• \'(fhen is radiotherapy considered an oplion,
and how effective is it? 53
• What does radiotherapy involvc? 56
• What arc the side effeclS of radiolherapy? 58
• How should [ rake care of my skin during
radiotherapy? 61
• Questions you may W:lllr 10 ask about
radiotherapy 63
hapter 8 Hormonal therapi 6S
• Introduction t hormonal therapi 65
• What i rhe viden e abour the ffe riven of
hormonal th rapies? 67
• ciding whether to u hormonal th tapi 6
• What ar the different eype of hormonal therapi 69
• What ar the id effe t of hormonal therapie ? 7J
• Que tion you may want to ask about horm nal
therapies 75

hapter 9 Chemotherapy 76
• Introdu tion to chemotherapy 76
• What i the evidence about the effe rivene s of
chemotherapy? 77
• De iding whether to have h motherap 78
• What does chemotherap involve? 79
• What ar the id e.ffe t of chemotherapy? 84
• Weighing up the benefit and ide effects of
chemotherapy 96
• Question you ma want to a k about
chemotherapy 9

haprer 1 External breast pro theses 98

• What i an external brea t pro the i ? 9
• Advantage and di advantages of a brea t
prosthesis 99
• hoo ing a brea t pro the i 100
• How much doe a breast pro the i 0 t? 102
• Wher an 1 get a br r pro the i ? 10

v
 haptcr 11 Breast reconstruction 104
• lmr du ti n lO bre t re on truetl n I
• dvantag and cli ad anragc of br
r on rructlon 106
• Th tlmmg f brea r recon tructi n 107
• Deciding ab ut breast re on trucrion 108
• Brea t recon rruction u ing implant 110
• Brea t r constru ti n u ing back mu le tran 6 r I 11
• Brea t re on tru ti n u ing abdominal mu cl
tran fer (TRAM flap) 113
• Other ryp of recon tru tion using ti uc fr m
another parr or the body 114
• ippl r on tru non 115
• How mu h doe breast reconstruction co t? JIG
• ue non you may want t k about brea t
r con tructlon 117
• here to get more information 119

hapt r 1 linicaJ trials 120

• What i a lini al trial? 120
• Why are cher linical trial? 120
• What are (he advantage and di advantag
of taking part in a lini al trial? 121
• How do 1 de ide wh rher t rake part in a
linical trial? 122

• Que ti n y u may wanr ro ask about

clinical trial 12

vi
 hapter 13 Lymphoedema 124
• What is lymphoedema? 124
• How can lymph d ma b managed? 125

hapter 14 Will treatment affect my fertility? 127

• Treatment during pregnancy 127
• Pregnan y during rr atm nt 128
• Pregnan y aft r treatmenc 129
• Menopausal symptOms 1 2

Chapter 15 WiU my daughter develop breast cancer? 135

• What increases my daught r's risk of
br a t cancer? 5
• Where co get more information 6
Chapt r 16 FoUow-up after treatment 137
• Why i foil w-up important? 137
• Follow-up appointment 138
• ngoing treatmenr and car 141

hapter 17 Your feelings: coping and upport 142

• Your feeling 142
• The impact f your diagnosis and trearmenr 147
• oping and uppOrt 152

hapter 18 Complementary and alternative therapies 160

• What are compl m nrary and alternative
treatment or therapies? 160
• What is the evidence about the effectiven s
of c mplementary and alternative therapies? 162
• Qu tion you may want to a k an alr rnarive
h aJrh practitioner 163

vii
 hapt r 19 Financial and practical upport 164
• 0 of t 1 and rrearment 164
• commodati n and ITa et when
having treatment 6
• [her practical help wh n having treatment 1 6
• Where to find out ab ut financial help 167

Messages from women who have had breast cancer 169

ppcndix 1 The internet 170

Appendix 2 Do you have breast cancer in your family? 172

(information she t and que tionnaire)

viii
Acknowledgments
Thi book ould nor have been developed withour th a i ranee of women
wh hav b en diagnosed with bre r can er and their familie , m dical and
radiarion ncologisr, breasr urgeon eneral urgeon, GP p chiarri t
counselling and uppon taff brea t ar nur and cancer r earcher.

Th per onal qu t in lud d in chi book are from inrerview with w men
who have been diagno ed with brea r ca.ncer and their partner. A special
thank r Edirh, ]ennifer Perrigr ve, Judirh Adam, Maxine Barker,
ram la William and heree rephen on. Their time, willingnc and
hone ry in haring rheir rorie i mu h appreciared.

Thank you ro all he women who w re happy to hare rheir photograph

wirh u f, r inclu ion in rhi book.

al vcr mu h appreciare the onrriburions made by rhe following

people and organi anon:
• rhe many medical and other h alth are profes ional wh r ok rhe rim
ro review and commenr on draft of rhi b ok
• rhe many on umer repre enrariv who to k rhe time to r vi wand
ommenr on draft of rhi book
• erwork u rralia
• r eanna Pagnini
• The Pi rure our e phot graphi library VI
• Run Run Run e ign Pry Lrd W
• To The Poinr ommuni arion and raining Pry Lrd.

ix
Thank y u to me member f rhe ationa! Breasr anecr entr
rly Breast Cancer Consumer Information Review Group:
Ms imone De Morgan mer
enior Proje r ffieer
arional Brea r an r entre

M Katherine Vaughan o-wrir r (from February 2 02)

nior Proje r fReer
ational Brea t an r Centre

Dr Karen Luxford hair (co January 2002)

Prooram Dire ror
ali nal Brea r aneer Centre

Dr Kathy Rainbird hair (fr m January 2002)

Treatment Manag r
a ional Brea r meer Centre

Dr Verity Ahem Radiation n ologi r

panment f Radi rh rap
tmead Ho pita!,

r Fran Boyle Medical neolo~i r

partm ne of edical On
Ro al j orch hore Ho pital,

M Vielci Howard n luner r pre nlatlvc

meritu Profes or urg on

Tom Reeve enior Medical Advi or
II tralian ancer erwork

Dr Jane Turner P ychiatrisr

niversiry of Queen land, QLD

Mr Owen ng ur o on
W Brea T an er In tilllre
e (mead Ho pical, W

x
Key messages
Important facts about early breast cancer
• Early breast cancer can be treated successfully, and most women
diagno ed and treated for early breast cancer do not die from the disease.
See Chapter 1.
• Early breast cancer is cancer that is contained in the breast, and mayor
may not have spread to the lymph nodes in the breast or armpit area.
It is po sible that some cancer cells may have spread outside the breast
and armpit area, but cannot be detected. See Chapter 1.

Treatment for early breast cancer

• The aim of treatment for early breast cancer is to remove the cancer
from the breast and armpit area, and to destroy any cancer cells that
may have spread to other parts of the body, but cannot be detected.
See Chapter 3.
• Every woman's situation and brea t cancer is different. Treatment that
is best for one woman may not be suitable for another woman.
See Chapter 5.
• Deciding on the most appropriate treatment/s for your situation means
weighing up, with your doctors, the possible benefits and side effects of
each treatment. Give yourself a week or two to decide about your
treatment if you need it. See Chapter 5.
• Treatment for early breast cancer usually involves either:
o breast conserving surgery followed by radiotherapy, or
o mastectomy (sometimes followed by radiotherapy).
See Chapters 6 and 7-
Hormonal thetapy (see Chapter 8) and chemotherapy (see Chapter 9) may
also be considered, depending on your particular situation.

xi
Surgery
• Breast surgery involves surgery to remove part of the breast (breast
conserving surgery) or all of the breast (mastectomy). In most cases,
breast surgery also involves surgery to remove one or more lymph nodes
in the armpit. See pages 31-32.
• External breast prostheses (false breasts) are available for women who
have a mastectomy. See Chapter 10.
• Breast reconstruction is usually an option for women who have a
mastectomy. See Chapter 11.

Radiotherapy
• Radiotherapy can help destroy any cancer cells that are left In your
breast tissue after surgery. See page 52.
• Radiotherapy to the breast is recommended after breast conserving
surgery (surgery to remove part of the breast). See page 53.
• Radiotherapy to the chest wall is sometimes recommended after
mastectomy (some breast tissue is left on the chest wall after surgery).
See pages 53-54.
• Radiotherapy to the lymph nodes in the armpit and/or lower neck is
occasionally recommended after breast conserving surgery or
mastectomy. See pages 54-55.

Hormonal therapy
• If there are hormone receptors on your cancer cells, hormonal therapy
can help destroy any breast cancer cells in your breast, or any cancer cells
that may have spread to other parts of your body but cannot be
detected. See pages 65-68.

Chemotherapy
• Chemotherapy can help destroy any breast cancer cells in your breast, or
any cancer cells that may have spread to other parts of your body, but
cannot be detected. See pages 16-17

xii
Clinical trials
• Women diagnosed with breast cancer may be able to partiCipate In

clinical trials that test new tteatments. See Chapter 12.

Follow-up
• It is important to have regular follow-up appointments with your doctor
after a diagnosis of early breast cancer. Appropriate follow-up involves
regular examinations and mammograms. It does not involve chest
X-rays, bone scans or blood tests unless there is a problem that shows
they are needed. See pages 138-140.

Coping and support

• The experience of being diagnosed and treated for early breast cancer is
different for every woman. Support is available to help women, their
families and friends cope with any difficult times. See Chapter 17.

Getting information
• It' important that you feel you have enough information to make
decisions about your treatment.
• For information about treatment, support services, financial help and
practical issues, phone the Cancer Helpline on 13 11 20.
• Professional interpreters are available for women who are not fluent in
English. See page 28.
Interpreters help women to understand everyrhing the doctors say. To
find an interpreter you can:
o talk to your doctor about your hospital's interpreting services
o phone the Cancer Helpline on 13 11 20
o phone the Translating and Interpreting Service on 13 1450.

xiii
Introduction
A guide for women with early breast cancer gives information and support to
women with early breast cancer, their partners, family and friends. It aims
to help them make decisions about their treatment and care.

Each year a very small number of men are also diagnosed with early breast
can er. For ease of reading, this book refers to women diagnosed with early
brea t cancer. However, we hope it will be useful to both women and men.

Information in A guide for women with early breast cancer is largely based on
evidence in the Clinical practice guidelines for the management ofearly breast
cancer, 2nd edition, endorsed by the National Health and Medical Research
Council in 200 J.

Key points about early breast cancer appear in boxes.

Evidence about treatment and support has been highlighted with a

shaded background.

For more information about the evidence in A guide for women with early
breast cancer, see the following publications, produced by the ational
Breast ancer Centre:
• Clinical practice guidelines for the management of early breast cancer;
2nd edition
• Psychosocial clinical practice guidelines: providing information, support
and counsellingfor women with breast cancer
• An ellidence-based approach to the management and support ofyounger
women with breast cancer.

xiv
To obtain a copy of a National Brea t Cancer Centre publication:
• down load an electronic copy from the arional Breast Cancer Centre's
website http://www.nbcc.org.au
• phone the ational Breast Cancer Centre publications &eecall
number: 1800 624 973
• complete an order form on the National Breast Cancer Centre's website
http://www.nbcc.org.au

A guide fOr women with early breast cancer includes the best available
evidence, based on research published up to mid 2000, as set out in the
Clinical practice guidelines fOr the management ofearly breast cancer, 2nd
edition. Where appropriate, evidence published up to the end of 2002
has also been included.

ew technologies and treatments are continually being developed. In

the future, they may be introduced for the management of women
diagnosed with early breast cancer.

If you hear about any other technologies and treatments, please ask
your doctors for more information.

xv
 What is early breast
cancer?

Early breast cancer is cancer that is contained in the breast and may
or may not have spread to the lymph nodes in the breast or armpit.
Some cancer cells may have spread outside the breast and armpit
area, but cannot be detected.

This chapter contains information about:

• how common breast cancer is
• how breast cancer develops
• what a breast looks like on the in ide (the anatomy)
• what causes breast cancer
• how breast cancer is found
• how a diagnosis of breast cancer is made.

~
arlY breast cancer can be treated successfully, and most women
diagnosed and treated for early breast cancer will not die from
the disease.

How common is breast cancer?

Breast cancer is fairly common. If all Australian women lived to the age of
75 years, then one in 11 women would develop breast cancer before this age.
Over 10000 women are diagnosed with breast cancer each year in Australia.
Breast cancer can occur at any age. The average age of women when they ate
diagnosed with breast cancer is 64 years. However, one-third of women
diagnosed with breast cancer are younger than 50 years.

Breast cancer can also develop in men, although this is rare. Male breast
cancer accounts for abour 1% of all breast cancer.

How does breast cancer develop?

We don't know exactly how long breast cancer takes to develop, but it
usually grows slowly. It can be several years before a breast cancer becomes
big enough to be detected.

Breast cancer starts in the ducts or lobuIes of the breast. The lobules
produce milk when a woman breastfeeds, and the milk travels down the
milk ducts to the nipple. See Figure 1, page 4. Over years, the cells that line
the lobules or ducts in the breast can increase in number. If the cells become
abnormal in shape and size, and if they multiply in an uncontrolled way,
they are called cancer cells.

If the cancer cells are contained within the ducts of the breast this is called
ductal carcinoma in situ (DCI ). DCIS is not covered in this book. The
ational Breast Cancer Centre has produced a guide for women with DCIS.
To order a copy of DuctaL carcinoma in situ: understandingyour diagnosis and
treatment, phone the ational Breast Cancer Centre on 1800624973.

If the cancer cells spread outside the ducts or lobules of the breast into the
surrounding tissue, this is called invasive breast cancer. Early breast cancer
is an invasive breast cancer. See Figure 1, page 4, showing invasive breast
cancer that started in a duct.

Invasive cancer cells sometimes spread outside tl1e breast area to other
parts of the body. They do this by moving through blood vessels, such as

2
vein, or through lymphatic vessels.
Lymphatic vessels are next to veins in
the body, and are connected to lymph
nodes (glands). Lymph nodes collect
normal fluid and dead cells from the
lymphatic vessels. See page 45 and
Figure 4, page 46, for information about
lymph nodes.

Lymph nodes can enlarge for many reasons, including an infection or

cancer. In breast cancer, the lymph nodes in the axilla (the armpit) are
usually the first site that the cancer will spread to outside the breast. These
are the lymph nodes usually referred to throughout this book. Occasionally,
breast cancer cells first spread to lymph nodes in other locations, such as the
internal mammary lymph nodes, located under the breastbone. See Figure 4,
page 46

If the cancer has spread to one or more lymph nodes in the armpit,
but is otherwise contained within the breast, then the cancer is 'early
breast cancer'.

If the cancer has spread to places near the breast, such as the chest (including
the skin, muscles or bones of the chest), but the cancer isn't found in other
area of the body, this is called locally advanced breast cancer.

If the cancer cells spread from the breast and are found in other areas of the
body, such as the bones or the lung, this is called metastatic breast cancer.
This book does not cover metastatic breast cancer. If you have metastatic
breast cancer, ask your doctor for a opy of the National Breast Cancer
Centre book A guide for women with metastatic breast cancer.

3
What does my breast look like
on the inside?

fatty tissue

muscle
lobules
(your breast
(milk sacs)
sits on top of
a layer of muscle)
milk ducts

invasive
breast cancer
(cancer cells ribs
have spread (the muscle
from the sits on top
milk duct into of your ribs)
surrounding
breast tissue)

nipple

ductal carcinoma in situ

(cancer cells are contained
within the milk duct)

Figure 1: A woman's breast, showing invasive breast cancer

4
What causes breast cancer?
It is not possible to say what exactly causes a woman's bteast cancer.
However, re earch has shown that some factors may increase a woman's risk
or chance of developing breast cancer. These factors are called risk factors.

Having one or more risk factors does not mean that a woman will definitely
develop breast cancer, bur it may increase her chance of developing
breast cancer.

~orne worneo with one or more risk factors may never develop
breast cancer.
-------------------------'
Even when a woman has a risk factor, there is no way to test whether it
actually caused her cancer.

Most women with breast cancer have no obvious risk factors.

Some known risk factors for developing breast cancer include:

• getting older
• having a family history of breast cancer (see pages 135-136)
• having previously been diagnosed with breast cancer or DCIS.

Other risk factors that seem to sLightly increase a woman's risk of developing
breast cancer include:
• starring menstruation, or 'periods', at a relatively early age (before 12
years); and starring menopause, or 'change of life', at a relatively late age
(after 55 years)
• not having children, or having a first child after 35 years of age
• not breastfeeding - the more months spent breastfeeding, the lower the
risk of developing breast cancer

5
• taking combined Hormone Replacement Therapy (HRT) after
menopause, especially when taken for 5 years or longer
• purring on a lot of weight in adulthood, especially after menopau e
• drinking alcohol (more than 2 standard drinks a day)
• taking the oral contraceptive pill - this appears to only increase the risk
during the period of taking the pill; the risk goes back down after you
stop taking it
• having previously been diagnosed with lobular carcinoma in situ (L IS)
or atypical hyperplasia (AB).

How is breast cancer found?

Breast can er can be found in a number of ways. You or your doctor may
have notic d a change in your breast, such as a lump or thickening, which,
after te ting, was found to be breast cancer. Other less common breast
changes that can be due to breast cancer include: a discharge from your
nipple; a change to the skin on your breast; or a change to the shape of your
breast or nipple.

You may not have had any symptom of breast cancer. The cancer might
have be n found by a routine mammogram, or incidentally when you had
a brea t biop y for ome other reason.

How is a diagnosis of breast

cancer made?
Your doctor arranges a series of tests to investigate a breast lump, a
thickening or an area that doesn't feel or look normal.

6
I. Examination of your breasts and taking
a history
Your doctor examines your breasts and asks some questions about your
breast change and abour any relevant medical and family history. Your
doctor then refers you for further tests.

2. Mammography and/or ultrasound

If you are older than 35 years, you will usually have a mammogram. This is
a low-dose X-ray of your breast. Ultrasound is often also used.

If you are younger than 35 years, or if you are pregnant or lactating, you will
usually have an ultrasound. This is because your breasts are likely to be dense,
and it' difficult to see any changes in dense breasts with a mammogram.

3. Getting a sample: a biopsy

If an abnormal area of rissue is found, a biopsy of the abnormal tissue is
done. During a breast biopsy, a small amount of breast tissue is removed.
The three main types of biopsies are: a fine needle aspiration (F A, or
F AB, where the B stands for biopsy), a core biopsy, or a surgical biopsy.
You may have one or more of tlle e.

• Fine needle aspiration

During an F A, a thin needle IS inserted into the abnormal area or
lump to remove some cells.

• Core biopsy
A core biopsy is usually done under local anaesthetic, which numbs the
abnormal area in the breast. A needle is inserted into the abnormal area
or lump to remove a thin core of tissue. Mammography or ultrasound
is usually used to guide tlle needle into the abnormal area.

7
• Surgical biopsy
A surgical biopsy is usually done under general anaesthetic, which
means that you are asleep while the te t is being done. Where possible,
other biopsy techniques are used, bur sometimes a surgical biopsy is
nece sary. While you are under the general anaesthetic, the surgeon
removes some of the abnormal tissue.
If the abnormal tissue can't easily be felt, a fine wire or carbon track is
inserted into the breast before a surgical biopsy. The wire Ot carbon track
helps the surgeon to locate the abnormal tissue during the biopsy.
The wire or carbon track is inserted under local anaesthetic, and
mammography or ultrasound is used to guide it to the abnormal tissue.
The surgical biopsy is then done in a separate operation, usually under
general anaesthetic. The surgeon follows the wire or carbon track to the
abnormal tissue, and removes some abnormal tissue (and the wire)
during the operation. Inserting the wire is called wire localisation, and
a surgical biopsy using the wire is sometimes called a wire biopsy.

After any of these different rypes of biopsie , the breast tissue or cell that
have been removed are sent to a pathologist who examines them to find our
whether or not the breast change or abnormaliry is due to cancer.

8
2 What does this diagnosis
mean for me?

This chapter contains information about: "I was incredibly upset.

• how you might feel when you are diagnosed with It was a great shock."

breast cancer
• the success of treatment for early breast cancer.

Receiving a diagnosis of early

breast cancer
When your docror first says the word 'cancer', it is 'The doctor said to
usually a great shock for you and your family. You me 'you've got breast
might feel overwhelmed, angry, scared, anxious or cancer'. I immediately
switched off. He wasn't
upset. These are all very normal responses ro being
talking to me; he was
diagnosed with cancer. See pages 142-159 for talking to somebody
information about how you might feel, and suggestions totally different."
for coping with your feelings. . . ------

During the first week or two after your diagnosis, you will probably be asked
ro make decisions about treatment. At this time you might still be feeling
shocked and confused, so you might find it helpful to talk about your
treatment options with your doctors, family and friends. Seek as much
information as you feel you need. See pages 26-28 for information about
making decisions about treatment. You may need ro visit your doctor a few

9
 "I went through a lot times to ask questions, and bringing a friend or family
of denial. A lot of member with you might help you to remember more
things I had to work clearly what the doctor has said. See pages 27-28 fOr
through myself
because nobody was
tips fOr talking with your doctors.
there to walk that
path with me."
You might also find ir helpful to talk with your doctors
about how you're feeling.

Sharing your feelings with others, even painful feelings, can help
you cope with your diagnosis of early breast cancer.

You can also ask your doctor to refer you to a breast care nurse or
counselling specialist, such as a psychologist or psychiatrist. See pages
152-159 fOr suggestions about how to cope with your feelings and how to
get support.

Will I die from breast cancer?

Early breast cancer can be treated successfully, and most women
diagnosed and treated for early breast cancer will not die from
the disease.

Some women want to know how likely they are to survive breast cancer.
Statistics about other women who have been diagnosed and treated for
breast cancer can be helpful. However, it's important to remember that rhese
are overall statistics. Every woman's breast cancer and situation is different.

The following information is about Australian women who are alive 5 years
after being diagnosed with breast cancer. Most women live much longer than
5 years, but the statistics are usually measured in this way.

10
Of all Australian women diagnosed and treated for "I asked my Gp, 'Am I
breast cancer between 1992 and 1997, 84% were still going to die from
alive 5 years later. However, we expect that more than breast cancer?' and
she said 'no, probably
84% of Australian women diagnosed and treated for
not'. I've always
early breast cancer today, will be alive 5 years after focused on that."
diagnosis. There are two reasons for this:

1. The figure of 84% includes women with advanced breast cancer, who are
more likely to die from the disease. The percentage of women with early
breast cancer who are still alive 5 years after diagnosis of early breast
cancer is higher than 84%.

2. The number of women who are alive 5 years after diagnosis of breast
cancer has increased over time, mainly because the breast cancer is being
found earlier, and treatments have continued to improve over time.

11
 Treatment for early breast
cancer

This chapter contains an overview of the treatments available for women

with early breast cancer.

The aim of treatment for early breast cancer is to:

• remove the breast cancer
• destroy any cancer cells that might be left in the breast
• destroy any cancer cells that may have spread outside the breast
and armpit area, but cannot be detected.

Early breast cancer is usually treated with surgery, with or without

radiotherapy. Hormonal therapy and chemotherapy may also be used.

Every woman's situation is different. Treatment that is suitable for

one woman may not be suitable for another.

The treatments usually offered to women with early breast cancer are briefly
ourlined in the following pages. PLease see Later chapters for detailed
descriptions ofthese treatments.

12
Breast surgery
Surgery for breast cancer involves breast conserving surgery or mastectomy.

Breast conserving surgery is surgery to remove the breast cancer and a

small area of healthy tissue around it. This is also called a lumpectomy,
complete local excision, or wide local excision. See pages 32-38.

Mastectomy is surgery to remove the whole breast. See pages 39-44.

Both types of breast surgery usually also involve axillary dissection, which
is surgery to remove some lymph nodes from the armpit. See pages 45-49.
A new surgical procedure called sentinel node biopsy is currently being
researched. This involves removing a smaller number of lymph nodes. See
pages 49-50.

Radiotherapy
Radiotherapy is used to help destroy any cancer cells that may be left in the
breast or chest after surgery. Radiotherapy is recommended after breast
conserving surgery, and sometimes recommended after mastectomy. See
pages 52-64.

See TabLe 1, page 14 fOr a summary ofthe options fOr treatment in the breast
and armpit areas (surgery and radiotherapy).

13
Table 1: Treatment of breast cancer cells in the breast and armpit area-
surgery and radiotherapy

If you have a small breast cancer If you have a large breast cancer
compared to the size ofyour breasr: compared to the size ofyour breast:

Or, if you have previously had

radiotherapy to the breast:

Breast conserving surgery Mastectomy

If you are at high risk of the

breast cancer coming back in the
breast tissue left on the chest
Almost always after breast wall, and
conserving surgery:
you have not previously had
radiotherapy to the brea t that
was removed:

Radiotherapy Radiotherapy

Note: This table is a guide only. You and your doctors will need to weigh up
the benefits and side effects of each treatmenr for you.

14
Systemic tre-atments
Systemic treatments are also called adjuvant treatments or additional
treatments. They work on the whole body to control cancer, and help
destroy breast cancer cells that may have spread outside the breast and
armpit area but cannot be detected.

Systemic treatments include hormonal therapy and chemotherapy.

Hormonal therapy
Hormonal therapies, such as tamoxifen, may be used in addition to breast
surgery with or without radiotherapy. Hormonal therapies benefit women
who have estrogen (oestrogen) receptors and/or progesterone receptors
on their cancer cells. Your doctor will read your pathology report to find our
whether or not these receptors are on your cancer cells. See pages 16-19 for
details ofthe pathology report.

Hormonal therapies work by changing the way that female hormones work
in the body. See pages 65-15.

Chemotherapy
Chemotherapy may be used in addition to breast surgery (with or without
other treatments, including radiotherapy and hormonal therapies).
Chemotherapy is usually given to women who are at risk of some cancer
cells having spread outside the breast and armpit area. For example, it might
be offered to women who have cancer in one or more lymph nodes in the
armpit, or cancer that is high grade. See pages 16-97.

15
 Pathology

This chapter contains information about pathology, including:

• what a pathology report is
• stages of breast cancer
• what makes breast cancer more or less likely to come back in the breast,
or to spread outside the breast.

What is a pathology report?

After a breast biopsy and breast surgery, some tests are done on the
removed breast tissue, and your doctor receives the test results in a
pathology report.

The pathology report is a summary of what the pathologist finds when he

or she examines your breast tissue under the microscope.

The pathologist will usually need at least a few days after your biopsy or
surgery to do the pathology tests and write the results in a pathology report.
. The pathologist then gives the report to your doctor.

The pathology report has information that will help you and your
doctor to decide which treatment or treatments are best for you.

You can ask your doctor to explain what the report means, and any words
in it that you don't understand.

16
The report usually includes information about the following:

Your diagnosis
For early breast cancer, the diagnosis is referred ro as 'invasive bteast cancer'.
See page 2 for a definition ofinvasive breast cancer:

Size and location of your breast cancer

The size of the breast cancer and where the cancer was in your breast is
included in the teport. This will affect the type of treatments yout doctors
tecommend. See pages 12-15 for a summary ofthe main treatments for early
breast cancer.

Hormone receptor status

Whether or not there are hormone receptors (estrogen Ot progesterone
receptots) on your cancer cells is written in the report. If your cancer cells
have hormone teceptors on them, this means the growth of your cancer is
affected by hormones. The hormone recepror status will affect whether
hormonal therapy is recommended. See pages 65-75 for details ofhormonal
therapies and how they work.

Lymph node status

Whether Ot not cancer cells are found in the lymph nodes from yout
atmpit is noted in the report. See page 45 for details oflymph nodes. This will
affect whether systemic treatments (such as hormonal therapies or
chemotherapy) are tecommended. See pages 65-75 for detaiLs of hormonaL
therapy; see pages 76--97 for details ofchemotherapy.

17
Surgical margin
When the cancer is removed during surgery, some healthy looking tissue
around the cancer is also removed. The healthy looking breast tissue is called
the surgical margin.

If no cancer cells (or very few cancer cells) are found in the surgical margin,
it's likely that all of the cancer has been removed from your breast. In this
case, the surgical margin is considered 'clear'.

If the surgical margin is not considered 'clear' by your surgeon, some cancer
could still be in your breast and you might need to have more surgery to
remove more breast tissue. This might involve having a mastectomy. See page
38 fir infirmation about needing more surgery after breast conserving surgery.

Grade of the breast cancer

The pathologist 'grades' the cancer according to the way the cancer cells
look and behave. Below are some points to help you understand what the
grade of your cancer means:
• high grade (Grade 3) breast cancer cells look very abnormal and grow
very fast
• intermediate grade (Grade 2) breast cancer cells look abnormal and
grow fast (less so than Grade 3 cancer cells and more so than Grade 1
cancer cells)
• low grade (Grade 1) breast cancer cells look abnormal and grow faster
than normal breast cells (less so than Grade 2 cancer cells).

A higher grade means the cancer is more active. This means there is a higher
chance that some cancer cells have spread outside the breast and armpit area.

The higher the grade, the more likely it is that systemic treatments (such as
hormonal therapy or chemotherapy) will be recommended.

18
All of the information in the pathology report, from the size to the grade of
the cancer, is considered when treatment recommendations are developed
and discussed with you.

r:-:-
You can ask your doctor for a copy of the pathology report for you
to keep.

Stages of breast cancer

Sometimes your doctor might refer to the stage of your breast cancer. Stages
are a way of summarising some of the information in the pathology report.

Stages are numbered, ranging from one (I) to four (IV). Stages that refer to
early breast cancer include: Stage I, Stage IIA, and early Stage liB. These
are described in TabLe 2.

Table 2: The stages of early breast cancer

Stage Size of the cancer Have any cancer cells been

found in the lymph nodes?

Stage I small no
(less than 2 cm)

Stage IIA small yes

(less than 2 cm)

larger no
(2-5 cm)

no cancer is found in the breast yes

Stage lIB larger yes

(early) (2-5 cm)

19
 The following stages do not tefer to
early breast cancer:
• Stage lIB (advanced)
• Stage IlIA
• Stage IIIB
• Stage IV.

These stages refer to either locally advanced breast cancer or metastatic

breast cancer. See page 3 for information about locally advanced breast cancer
and metastatic breast cancer.

What makes breast cancer likely to

come back, or to spread?
Early breast cancer can be successfully treated, and for most women,
breast cancer will not come back after treatment.
L--

For some women, breast cancer is found some time later in the breast that
was previously treated, or breast cancer cells are found to have spread to
other pans of the body.

Your doctors can use information in the pathology report to work out how
likely the cancer is to come back in the breast or to spread to other areas of
your body. There are many features of breast cancer that affect the chance of
the breast cancer coming back or spreading. Some of the main features are
listed in Table 3, page 21.

Many different features of breast cancer, and how they affect the chance of
the breast cancer coming back or spreading, are currently being researched.
Your breast cancer could be affected by other features that are not listed in
Table 3, page 21.

20
Table 3: Features of breast cancer that affect how likely the cancer is to
come back (in the treated breast or chest area) or to spread (to other
areas of the body) after treatment

Features of Less likely More likely

breast cancer

Information in the The bteast cancer is The breast cancer is

pathology teport less likely to come more likely to come
back, or spread, if: back, or spread, if:

size of the cancer the cancer is smaller the cancer is larger

(less than 2 cm) (more than 2 cm)

lymph nodes in no cancer cells are some cancer cells are

the armpit found in the lymph found in a number of
nodes lymph nodes

hormone the cancer cells have the cancer cells

receptors hormone receptors and don't have hormone
you have hormonal receptors
therapy

grade the grade of the cancer the grade of the cancer

is low (Grade 1) is high (Grade 3)

surgical margin the surgical margin is the surgical margin is

clear not clear

/1
If your breast cancer has one or more of the features listed in the 'more
likely' column above, it does not necessarily mean that your cancer will
come back or spread outside the breast and armpit area.

If your breast cancer has any or all of these features, you may still
be treated successfully.

21
 Deciding about your
treatment

"It took me about two This chapter contains information about:

and a half weeks to
think about coming
• your treatment team

back to get the • getring a second opinion

treatment. I thought, • making decisions about treatment
'This is a foreign thing
going into my body, • using a professional interpreter
what's going to
happen?' "
• guestions to help you decide about treatment.

Your treatment team

During your treatment for early breast cancer you will meet a number of
doctors and other health care professionals.

If the doctors and health care profes ionals involved in your care meet or
talk with each other to plan your treatment and care, this is called
multidisciplinary care. They are called a multidisciplinary team.
Together, the team will consider which treatment options are suitable for
your situation.

Multidisciplinary teams may hold regular m etings at which your treatment

will be discussed, or, if all the team members are not at the same location,
they may discuss your treatment by phone or video conference. One or
more members of the team will then discuss your options with you, before
you and your doctors make decisions about your treatment.

22
Whether or not you're treated by a multidisciplinary "At my first
team, many health care professionals will be involved appointment I had
in your treatment and care. They may include some or half an hour with the
breast nurse. She
all of the following: explained what would
• your general practitioner (GP) or family doctor happen so by the time
who provides ongoing care and refers you to I started going through
with everything, I was
special ists fully aware of where
• a surgeon who does breast surgery I was going to end up
and just how it was
• a pathologist who examines tissue (that is all done,"
removed from the body) under the microscope, to
see if cancer is there
• a radiologist who specialises in reading X-rays, such as mammograms
• a radiation oncologist who special ises in radiotherapy
• a medical oncologist who specialises in chemotherapy and
hormonal therapy
• a breast care nurse who specialises in caring for women with breast diseases
• an oncology nurse who specialises in caring for people with cancer.

Other health care professionals who may be involved in your care include:
• a counsellor, psychologist or psychiatrist who specialise in giving
emotional support and/or in managing anxiety and depression (see pages
152-159for suggestions about how to cope with yourfeelings andget support)
• a social worker who specialises in providing support and information
abou t practical assistance, such a fI nancial assistance, child care and
help in the home (see pages 166-168 for a list ofways to get financial and
practical su.pport)
• a physiotherapist who specialises in providing information about
exercises after surgery and in treating lymphoedema (see pages 124-126
for inftrmation about Lymphoedema)

23
 "Having a • an occupational therapist who specialise In
multidisciplinary team treating lymphoedema (see pages 124-126 for
was a great plus information about lymphoedema)
because it meant
everyone, the whole • a plastic surgeon who specialises in doing breast
team, was working reconstruction, for women who have a mastectomy
together and
(see pages 104-119for details ofbreast reconstruction).
discussing my case
I think that was far
If you feel that you would benefit from the services
better than just being
in isolation." they provide, ask your doctors to refer you to one of
these health care professionals.

Although you may see a range of doctors and other health care professionals,
there will usually be one doctor who is your main point of con tact. This
person can change during different stages of your treatment. For example,
at first your main point of contact might be your surgeon, bur if you
have radiotherapy, your main contact person could larer change to your
radiation oncologist.

What if I don't live in a major city?

If you live outside a major city, you may need to travel to a major centre to
see a radiation oncologist or a medical oncologist. Or, if there is a service in
your region that pays for specialists to travel to the region, you may be able
to meet with the oncologist without travelling.

The amount of travel can also be reduced if your GP or surgeon discusses

your treatment with the oncologist on your behalf. You may, however, prefer
to travel and meet with the oncologist yourself.

However your treatment is planned, you may need to travel for radiotherapy
treatment because it is only available in major centres. See pages 166-168 for
ways to get financial help with travel and accommodation costs. Chemotherapy
can usually be given at a hospital in your nearest regional town.

24
Feeling comfortable with your treatment team
"I like the way my
Feeling that you get enough information and
dactor treated me and
support &om youe treatment team can help my husband. He
youe recovery &om breast cancer. wasn't just talking
about my breast or
Looking after your emotional wellbeing is a significant research or being very
clinical. He took time
part of your overall care. You need to feel comfortable to get to know me and
with your treatment team, and get the support and the family and never
information you need. It can take some time to stood over me."
establish a good relationship with your treatment team
members, and for them to understand your needs. It's important to tell your
treatment team about any particular concerns and priorities you may have.

Questions you may want to ask about your

treatment team
Below are some questions you may want to ask members of your treatment
team, to understand the role they play in your care.
• Who are the members of my treatment team?
• Am I being treated by a multidisciplinary team?
• Who should I call if I have a problem?
• When should I contact my GP?
• Doe information about my test results and treatment go to all
treatment team members, including my GP?
• Do my treatment team members discuss my progress and care?
• Who will I see for follow-up visits after treatment?
• If I feel I could benefit from their services, can I organise to see a
COLI nseUor!psychologist/psych iatrist/social worker!occupational therapist/

physiotherapist/or other health care professional?

2S
Getting a second opinion
"I walked straight out You have the right to get a second opinion at any
of the surgeon's office time. Having a second opinion can: help clear up any
and got in the cor questions you may have; help you decide which doctor
and rang my Gp. I felt
you'd prefer to manage your treatment; help you
the need to go and
talk to another decide which treatment or treatments to have; help
medical person." you to feel reassured about your choice of treatment.

If you're happy with the treatment recommended by your doctor and the
way s/he relates to you, a second opinion may not be needed.

If you want a second opinion, you could ask either your initial doctor or
your GP to refer you to another doctor.

You may decide, after seeing another doctor, that you want the first doctor
to manage your treatment. The fact that you have seen another doctor
should not affect how the first doctor manages your treatment.

Making decisions about treatment

Your involvement in treatment decisions
You are entitled to choose the treatment that best suits you. Before you make
a decision, it's recommended that you discuss your treatment options with
your doctor and any other people you may choose (such as family members,
or other health care professionals).

You may want to be actively involved in deciding abour your treatment, or

you may want your doctors to make the decisions for you. Either way, you
need to tell your doctors what you prefer. Your preference could change over
time, so it's best to keep your doctors informed about any changes.

After weighing up the possible benefits and side effects of each treatment,
you may decide not to have a particular treatment. It's within your rights to

26
say so. Discuss this decision with your doctors and "But when it boils
people close to you. You can still choose to have down to it, it's your
treatment at a later stage, bur, over time, the success of decision, nobody else's.
You can only decide
the treatment could be less. The treatments your what's right for you."
doctors recommend may also change over time.

When do I need to decide about treatment?

Before starting treatment, you might need time to gather and consider
information, make practical arrangements, and get support from family and
friends. Taking a week or two to decide about treatment can give you time
to understand breast cancer and choose the most appropriate treatment for
you. You should feel reassured that it's OK to take a week or two to make
treatment decisions.

Taking a week or two to decide about treatment will not affect the
outcome of your treatment.
However, it is not wise to take months to decide.

Making decisions: tips for talking with

your doctors
To make decisions about your treatment, you need good quality
information about breast cancer and how it's treated. However, receiving
lots of information about something new can feel overwhelming, confusing
and difficult to remember.

Ask your doctors as many questions as you need, even if you have
asked them before, and encourage your family to do the same.

27
 "He said to go away You could find some or all of mese suggestions helpful:
and think about it (or
• ask for more information at each visit to your doctor
a week.And I thought
that IS really great • ask a relative or a friend to come with you when
because when you get you visit your doctor
all that information
you need to sit down • if your doctor agrees, tape record all discussions so
and thmk out all the that you or your family can later go through what
options that you have." the doctor said
• ask your doctor to provide you with a follow-up letter, summanstng
your VISIt
• write down questions as they come to mind, so you can remember to
ask your doctor at your next visit.

After visiting your doctor, you might like to meet with a breast care nurse,
who can also give you information and answer some of your questions.

Using a professional interpreter

If you are reading this book for a family member or friend who i not fluent
in English, you can get a professional interpreter to help.

Only a qualified and suitable interpreter can make sure mat your family
member or friend understands everything me doctor says. It could be hard for
you to interpret some of the medical words, or you might feel upset by what
is discussed. This could affect your ability to interpret everything that is said.

Interpreters are available in both public and private hospitals, although they
must be booked in advance. To arrange for an interpreter to be with your
family member or friend during their appointment, you can:
• ask your doctor about the hospital's interpreter services
• call the Cancer He1pline on 13 11 20 for information about services in
your area
• call the Translating and Interpreting Service on 13 1450.

28
Questions to help you to decide
about treatment
Below is a list of questions that could help you decide "I went on my own to
about the treatment of your breast cancer. You may my ~rst appointment
and it went straight
want the answers to some of the questions straight
over my head. So the
away, while some may become important later on. doctor very kindly said,
Some may not matter to you at all. You can either ask 'Come back later, with
these questions directly, or use them as a guide to put family or someone if
you want, and 1'1/
together your own questions. discuss it again'."

General questions
• Do you mind if my husband/partnerlfriendlrelative comes with me to
the consultation?
• Do you mind if I tape record this consultation?

About breast cancer

• What i early breast cancer?
• Where exactly is my breast cancer?
• Can breast cancer be inherited? hould I be tested for this?
• Can I die from breast cancer?
• What are the chances of the breast cancer coming back in the same
breast after treatment?
• What are the chances of getting a new breast cancer in the other breast?
• What are the chances of the breast cancer spreading to other parts of my
body after treatment?
• Is it still possible to have children and breastfeed after treatment for
breast cancer?

29
About your treatment
"I thought it must be a • What treatment do you recommend?
mistake, maybe check
again. So 1 went there
• What are the benefits of each treatment?

WIth my interpreter • What are the risks of each treatment?

and she translated • What are the side effects of each treatment?
everything and I
understood everything." • How successful are these treatments for breast
cancer?
• I'd like a couple of weeks to make a decision - will that make any
difference?
• Where do I go for treatment?
• How can I speak with other women who have been treated for
breast cancer?
• Are there alternative/complementary treatments that might help me?
• Can I have alternative/complementary and other treatments at the
ame time?
• Can I take the pill (oral contraceptive pill) while I'm having treatment?
Can I take the pill after I've finished treatment?
• Will I experience menopause early?
• Will my sex life be affected?
• Can I have Hormone Replacement Therapy (HRT) while I'm having
treatment? Can I have HRT after I've finished treatment?
• Can I work while I'm having treatment?
• Can I decide to not have a treatment?
• Can I seek another medical opinion?
• What will treatment cost?

30
 Breast surgery

This chapter is designed to help you make decisions about breast surgety,
and to prepare you for what to expect during and after surgery. Information
in this chapter includes:
• evidence for the effectiveness of breast surgery
• breast conserving surgery
• mastectomy
• the experience of breast surgery
• surgery to remove lymph nodes
• questions you may want to ask about surgery.

Introduction to breast surgery

The aim of breast surgery is to:
• remove the breast cancer from the breast
• test whether breast cancer cells have spread to the lymph nodes
in the armpit.

Breast surgery for breast cancer involves one of the following:

• Breast conserving surgery
Surgery to remove the breast cancer and a small margin of healthy tissue
around it. Breast conserving surgery is sometimes called a lumpectomy,
complete local excision, partial mastectomy or wide local excision.
See pages 32-38 for details.

31
• Mastectomy
Surgery (Q remove the whole breast. See pages 39--44 ftr details.

In most ca es, breast surgery also involves removal of lymph nodes

(glands) from the armpit. See pages 45-50 ftr details.

What is the evidence about the

effectiveness of breast surgery?
Breast conserving surgery plus radiotherapy is as effective as
mastectomy for most women with early breast cancer.

This means that, for most women, the chance of the breast cancer spreading
(Q other parrs of the body or the chance of dying from breast cancer is the
sanle after either treatment. Ask your doc(Qr about the benefl ts and risks of
these treatments for you.

Breast conserving surgery

In this section you can read about: when breast conserving surgery IS
considered an option; what is involved; what it looks like; the advantages of
breast conserving surgery; and what you can expect afterwards.

When is breast conserving surgery considered

an option?
Breast conserving surgery is considered an option if:
• the cancer is small enough compared to the size of your breast so as to:
safely remove all the cancer and a surgical margin of healthy tissue, and
give an acceptable appearance
• it is your preference.

32
What does breast conserving surgery
usually involve?
Breast conserving surgery usually involves:
• removal of me cancer and a small area of healthy tissue around it, called
the surgical margin
• removal of lymph nodes from the armpit
• after surgery, radiomerapy ro me conserved breast.

Radiotherapy ro the lymph nodes in the armpit and lower neck is

occasionally considered an option after breasr conserving surgery for
women who:
• don't have lymph nodes removed from the armpit (see page 47: when are
the lymph nodes not removed); or
• are at high risk of the cancer coming back in the armpit (see page 55 for
details ofhigh risk).

What are the advantages of breast

conserving surgery?
If you have breast conserving surgery, you:
• will be able ro keep your breast, although it will not look the same as jt
did before surgery
• will usually not need ro wear a breast prosthesis or consider breast
reconstruction
• are likely ro feel better about the way your body looks, compared with
how you might feel if you had a mastecromy.

33
What does breast conserving surgery look like?

removal of
lymph nodes
~
'-" ~ "
-l
removal of
breast tissue

. scars after breast

conserving surgery
.,,- --

Figure 2: Before and after breast conserving surgery

Note that the position of the scar on your breast will depend on the location
of your cancer. Your breast will also change in shape and size, depending on
how much breast tissue is removed.

34
What can I expect after breast
conserving surgery?
Below is a description of what to expect after breast conserving surgery,
including possible side effect. Some side effects happen to most women
after breast con erving surgery (the 'usually' section), bur you're very unlikely
to have all the side effects listed in the other sections. While some side effects
happen straight after surgery, other side effects can appear months or even
years later.

If you're worried about possible side effects, talk to your doctor about how
to prevent, treat or manage them. For example, physiotherapy exercises
can prevent or manage some side effects, and pain can be managed with
pain-killing drugs.

Usually
You can expect to experience the following with breast conserving surgery:
• you will have a dressing (bandage) over the surgery site
• you will be left with a scar on your breast, which will improve with time
• you will be left with a separate scar elsewhere (usually the armpit) if your
lymph nodes are removed
• your breast will change in shape and size, depending on how much
breast tissue is removed compared with the size of your breast
• you will be recommended radiotherapy, which is usually given about
6-8 weeks after surgery (see pages 52-64 for details)
• if lymph nodes have been removed, you will usually have a drain (plastic
tube) from the underarm, to remove blood and lymph fluid that collects
during the healing process - the drain is usually removed a few days
after surgery
• you may have some pain, discomfort or numbness in your breast
(and/or armpit, if you have lymph nodes removed) while the wounds
are healing - this usually settles in a few weeks.

35
Often
You will probably expenence one or more of the following with breast
con ervmg urgery:
• if your lymph nodes have been removed, you may have heavine or
bruising under the arm - this usually ettles in a few weeks
• you may have numbness or tingling in your arm, shoulder or other parts
of your breast or chest if your lymph nodes have been removed - this
usually becomes less troublesome with time, but the feeling in these
areas may be changed permanently
• you may have some stiffness in your shoulder, either temporarily or
permanently, if your lymph nodes have been removed - ask your
doctor or physiotherapist about arm exercises that can help prevent or
manage stiffness
• fluid may collect in, or around, the scar in your breast or the car in your
armpit - this is called a seroma and may need to be drained.

Sometimes
You might expenence one or more of the following after breast
conserving urgery:
• you may have swelling and bruising around the wound in your breast or
around the wound in your armpit - this usually settles in a few weeks
• you may need to have more surgery to remove more breast tis ue if the
surgical margin around the cancer is not considered 'clear' - this is to be
sure that all the cancer has been removed (for some women, additional
urgery may be a mastectomy - see page 38 for details)
• you may feel some distress about your body image, sexuality or
self-esteem (see pages 152-159 for information about coping with your
feeLings and getting support)

36
• you may be unhappy with your breast shape after surgery
• you may develop persistent swelling in your arm, hand or chest if your
lymph nodes have been removed - this is called lymphoedema, and
usually develops gradually, a few months or even years after surgery (see
pages 124-126for information about Lymphoedema and its management).

Uncommonly
It is unlikely, but possible, that you could experience one or more of the
following after breast conserving surgery:
• you might get an infection in the scar in your breast or in the scar in
your armpit
• you might have some bleeding in the scat in your breast or in the scar
. .
In your armpit
• you might have some mild pain in your armpit that lasts up co a year or
sometimes longer, if your lymph nodes have been removed.

Talk to your doctor about any side effects you're concerned about,
or think you're developing. Most side effects can be managed with
medical care.

How long will I be in hospital?

If you're having breast conserving surgery, you're likely co be asked co arrive
at hospital on the day of surgery. The operation usually takes up co an hour
and a half, but there will also be preparation time, and time co recover from
the anaesthetic.

How long you stay in hospital could be anywhere between one day and one
week. It depends on your progress in hospital and whether or not
community supporr is available when you leave the hospital.

37
How long will I take to recover?

Each woman is different in how long she takes to recover from

breast conserving surgery.

Your wounds from surgery should be 'warerproof' after about 24 hours and
fairly well healed after about a week. During the first few weeks, the wounds
will be sensitive and need extra care. They will continue to heal and become
stronger over time.

Many women continue to feel tired and need a lot of rest, even when their
wounds seem to have healed. You may find that you're ready to return to
work and/or your regular activities after 2 or 3 weeks, or you may need
longer to recover.

Your physical recovery is important, but only part of the recovery process.
You will also need time to recover emotionally. See page 45 about the
experience o/breast surgery; see pages 152-159 for information about coping
with your feelings and getting support.

Will I need more surgery?

The pathologist will examine the breast tissue removed during breast
conserving surgery and work our how much healthy breast tissue surrounds
the breast cancer. This is called the surgical margin. See page 18 for
information about surgical margins. If the surgical margin is not considered
'clear', rhen:
• the surgeon may be concerned that not all the breast cancer has been
removed, and
• yOll may need to have more surgery to remove more breast tissue.

For some women, the additional surgery may be a mastectomy.

38
Mastectomy
In this section you can read about: when mastectomy
is considered an option; what is involved; what it
looks like; the advantages of mastectomy; and what
you can expect aftet surgery.

When is mastectomy considered

an option?
For some women, breast conserving surgery plus radiotherapy is not
considered the best treatment option. Mastectomy is considered an option if:
• the area of cancer involved is large compared to the size of your breast
• the cancer is in more than one area of your breast
• you've had breast conserving surgery and the area of healthy-looking
tissue (surgical margin) around the breast cancer is not considered 'clear'
• the cancer has come back again in your breast and you had radiotherapy
for your initial treatment - if radiotherapy has already been used to treat
your breast, it can't be used again to treat that same breast
• it is your preference.

What does mastectomy involve?

Mastectomy usually involves:
• removal of the entire breast (usually including the nipple)
• removal of lymph nodes from the armpit - this is usually done through
one mastectomy cut, so there are no separate scars under the arm.

Some breast tissue is left on the chest after mastectomy. Radiotherapy to the
chest is sometimes considered for women at high risk of the cancer coming
back on the chest wall. See page 54 for information about being at high risk
after mastectomy.

39
Radiotherapy to the lymph node In the armpit and lower neck IS

occasionally considered an option after ma tectomy for women who:

• don't have lymph nodes removed from the armpit (see page 47: when are
the lymph nodes not removed?); or
• are at high risk of me cancer coming back in me armpit (see page 55 fOr
infOrmation about high risk).

What does mastectomy look like?

removal of
lymph nodes

removal of breast

~
scar after
) mastectomy

...... -.-

Figure 3: Before and after mastectomy

40
What are the advantages of mastectomy?
Mastectomy may be the most suitable treatment option for your particular
situation. An advantage of a mastectomy is that you may not need to have
radiotherapy after surgery.

What can I expect after mastectomy?

Below is a description of what to expect after a mastectomy, including
possible side effects. Some side effects happen to most women after a
mastectomy (the 'usually' section), but you're very unlikely to have all the side
effects listed in the other sections. While some side effects happen straight
after surgery, other side effects can appear months or even years later.

If you're worried about possible side effects, talk to your doctor about how
to prevent, treat or manage them. For example, physiotherapy exercises
can prevent or manage some side effects, and pain can be managed with
pain-killing drugs.

Usually
You can expect the following after mastectomy:
• you will have a dressing (bandage) over the surgery site
• you will be left with a scar that runs across your chest, which will
improve with time
• if the lymph nodes have been removed, you will usually have one or
more drains (plastic tubes) from the chest and/or underarm to remove
blood and lymph fluid that collects during the healing process - these
are usually removed a few days after surgery
• you may have some pain, discomfort or numbness in your chest while
the wounds are healing - this usually settles in a few weeks
• you may consider wearing a prosthesis or having breast reconstruction (see
pages 98-103 fOr details ofbreast prostheses; see pages 104-119fOr details of
breast reconstruction).

41
Often
You will probably experience one or more of the following after mastectomy:
• if your lymph nodes have been removed, you may have heaviness or
bruising under the arm - this usually settles in a few weeks
• fluid may collect in, or around, the scar in your chest - this i called a
seroma and may need to be drained
• you may have numbness or tingling in your arm, shoulder or other parrs
of your chest if your lymph nodes have been removed - this usually
becomes less troublesome with time, but the feeling in these areas may
be changed permanently
• you may have some stiffness in YOUt shoulder, either temporarily or
permanently, if your lymph nodes have been removed - ask your
doctor or physiotherapist about arm exercises that can help prevent or
manage stiffness
• you may be aware of a difference in weight berween the rwo sides of
your body, particularly if the breast on your other side is large - the
weight can be balanced by using an external breast prosthesis, or with
breast reconstruction
• you may feel grief about the los of your breast
• you may feel some distress about your body image, sexuality or
self-esteem (see pages 152-159 for information about coping with your
feelings and getting support).

Sometimes
You might experience one or more of the following after mastectomy:
• you may have swelling and bruising around the wound in your chest, or
in your armpit - this usually settles in a few weeks
• you may develop persistent swelling in your arm, hand or chest if your
lymph nodes have been removed - this is called lymphoedema, and
usually develops gradually a few months or even years after surgery
(see pages 124-126for details oflymphoedema)
• you may be recommended radiotherapy (see pages 53-54 for details).

42
Uncommonly
It is unlikely, bur possible, mat you could experience one or more of the
following after mastecromy:
• you might get an infection in the scar in your chest
• you might have some bleeding in the scar in your che t
• you might have some mild pain in your armpit that lasts up ro a year,
or sometimes longer, if your lymph nodes have been removed
• your scar might take a long time ro heal.

Talk to your doctor about any side effects you're concerned abOU~'
or think you're developing. Most side effects can be managed with
medical care.
--~

How long will I be in hospital?

If you're having a mastecromy, you're likely ro be asked ro arrive at hospital
on the day of surgery. The operation usually takes 1-2 hours, but there will
also be preparation time and time ro recover from me anaesthetic.

How long you stay in hospital could be anywhere between one day and
one week. It depends on your progress in hospital and whether or not
community suppOrt is available when you leave me hospital.

If you have an immediate breast reconstruction (a reconstruction done at

the same time as the mastecromy operation), your stay in hospital might
need ro be longer than if you have a mastecromy only. See pages 107-108
fOr details ofthe timing ofbreast reconstruction.

43
How long will I take to recover?

Each woman is different in how long she takes

to recover from a mastectomy.

Your wounds from surgery should be 'waterproof'

after about 24 hours and fairly well healed after about
a week. During the first few weeks, the wounds will
be sensitive and need extra care. They will continue [Q
heal and become stronget over time.

You can wear a soft temporary breast prosthesis (false breast) while your
wounds are healing. After this time, you can be fitted for a permanent
breast prosthesis. See pages 98-103 for details ofexternal breast prostheses.

Many women continue to feel tired and need a lot of rest, even when their
wound seems to have healed. You may find you're ready to return [Q work
and/or your regular activities after 2 or 3 weeks, or you may need longer
to recover.

If you have an immediate breast reconstruction, your recovery might be

longer than after mastectomy only. See pages 107-108 for details of the
timing ofbreast reconstruction.

Your physical recovery is important, but only part of the recovery process.
You will also need time to recover emotionally. See page 45 about the
experience of having breast surgery; see pages 152-159 for information about
how to cope with your ftefings and how to get support.

44
The experience of having
breast surgery
Although each woman's experience of breast surgery is different, talking with
other women who have had breast surgery can be informative and supportive.
See pages 154-151 for information about breast cancer support services.

It is common for women to feel a sense of loss after breast surgery, and to
experience some sexual and self-esteem difficulties. You may like to talk with
your doctors or breast care nurse about your feelings, or ask to be referred
to a counsellor, psychologist or psychiatrist. See pages 152-159 for
information about coping with your fieLings and getting support.

Surgery to remove lymph nodes

In this section you can read about: what lymph nodes are and where they
are; why lymph nodes are removed and what is involved; the side effects of
removing lymph nodes; and sentinel node biopsy.

What are lymph nodes?

Lymph nodes (glands) are in several areas of the body, including the armpit.
They protect the body from infection. If an infection is present in the body,
the lymph nodes sometimes become swollen. This is why the lymph nodes
in your neck can become swollen if you have a sore throat.

Lymph nodes are connected to lymphatic vessels, which travel beside the
veins in the body. Lymph nodes filter fluid and dead cells from the
lymphatic vessels. The lymph nodes in the armpit (axilla) drain lymphatic
fluid from nearby areas such as the breast, and are often the first place breast
cancer cells will spread to outside the breast. Studies estimate that cells from
about 10% of small cancers (l cm or less) will spread to the lymph nodes in
the armpit. Cells from larger cancers are more likely to spread to the lymph
nodes in the armpit than cells from smaller cancers.

45
 Where are the lymph nodes?
Lymph nodes are in several areas near the breast. The main areas are shown
in Figure 4, below.

supraclavicular
lymph nodes
(above the collar bone)

~..• •
infraclavicular
lymph nodes

... .
•• • •
•
•
•
J . internal mammary
lymph nodes
("de, the bee'" booe)

axillary lymph nodes ~.

(in the armpit)

Figure 4: Lymph nodes near the breast

Why are lymph nodes in the armpit removed?

It is not always possible for your doctors to feel whether cancer cells have
spread to the lymph nodes. To test whether they have, some nodes are
removed during surgery and examined by the pathologist under a
microscope. Removal of lymph nodes from the armpit is called axillary
clearance or axillary node dissection.

46
 The main purpose of removing lymph nodes &om the armpit is to:
• remove any breast cancer that may be in the armpit area
• find out whether breast cancer cells have spread into the
lymph nodes
• help plan further treatment (chemotherapy, hormonal therapy,
radiotherapy).

If cancer cells are found in the removed lymph nodes, there is a higher
chance that some cancer cells have spread to other areas of the body, even if
they cannot be detected. In this case, the cancer is best treated by adjuvant
(additional) treatments, such as hormonal therapy and chemotherapy. These
treatments are often called systemic treatments because they work on the
whole body to kill cancer cells and prevent more cancer cells from developing.

If cancer is in the lymph nodes and the lymph nodes are removed, this will
also help stop the cancer from growing there.

Radiotherapy to lymph nodes in the armpit and/or lower neck may be

recommended after surgery to remove lymph nodes from the armpit if there
is a high risk that the cancer in the armpit has not been completely removed.
See page 55 ftr details ofhigh risk after removal oflymph nodes.

When are the lymph nodes in the armpit

not removed?
Lymph nodes might not be removed in women who:
• are elderly
• have serious health problems
• choose not to have this surgery.

If you would like to find out more, ask your doctor about the risks and
benefits of having the lymph nodes in the armpit removed.

47
What is involved when lymph nodes in the
armpit are removed?

Lymph nodes are usually removed from the armpit during the same
operation as the mastectomy or breast conserving surgery.

The number of lymph nodes that need to be removed will be different for
each woman.

What are the side effects of removing lymph

nodes from the armpit?
Because lymph nodes protect the body from infection, removing some
lymph nodes can mean that nearby areas of the body (such as the arm) have
a higher risk of developing an infection. Potential side effects of removing
lymph nodes from the armpit are listed below.

• Numbness of the arm, shoulder, armpit and parts of the chest

Numbness can happen if nerves are removed or damaged by surgery.
Various studies estimate that some numbness is felt by about 80% of
women who have lymph nodes in the armpit removed. About 5% of
women who have lymph nodes in the armpit removed feel some pain
that can last up to a year, or sometimes longer.

• Wound infection
Studies have estimated that about 10% of women develop an infection
in their wound after having lymph nodes in the armpit removed.
Sometimes surgeons give antibiotics during surgery to help prevent
wound infection. If an infection develops, see your surgeon as soon as
possible. It can be treated by antibiotics and may need to be drained.

48
• Seroma
Seromas are areas of fluid that collect in the body. Seromas can occur
after the lymph nodes in the armpit are removed. The fluid can be
removed using a drainage tube or a needle and syringe.

• Shoulder stiffness, either temporary or permanent

Exercises for your shoulder soon after surgery can help prevent or
manage shoulder stiffness. Your specialist will tell you about
recommended exercises, and a physiotherapist may also be able to help.

• Lymphoedema
Lymphoedema is the swelling of an area of the body, such as the arm,
breast or remaining breast tissue (left on the chest after mastectomy). It
can develop after surgery to remove lymph nodes, or after radiotherapy
to the armpit. See pages 124-126for more details ofLymphoedema and its
management.

Talk to your doctor if you think you might be developing any of

these side effects, or if you would like to find out more about them.

What is sentinel node biopsy?

Sentinel node biopsy is a new surgical procedure, still being tested in
clinical trials. It's thought that sentinel node biopsy might have fewer side
effects than the standard surgery to remove lymph nodes (axillary node
dissection or axillary clearance). See pages 48-49 for information about side
effects ofstandard surgery to remove Lymph nodes.

Sentinel node biopsy is being tested in clinical trials to see:

• if it can accurately find out whether cancer cells have spread to the
lymph nodes
• what (if any) side effects it has.

49
A sentinel node biopsy means surgery to remove the sentinel lymph node
or nodes. There can be more rhan one sentinel node. In this chapter
'sentinel node' is used to mean 'the sentinel node or nodes'.

The sentinel node is the firsr lymph node that breast cancer cells may spread
to outside the breast. In most cases, the sentinel node is in the armpit.
However, sometimes the sentinel node is in a different area of the body, such
as a lymph node under the breastbone or above the collar bone. See Figure
4, page 46, showing the location oflymph nodes near the breast.
There are different ways to find the sentinel node. In one technique, a
slightly radioactive substance is injected around the breast cancer. Special
scans are used before and during surgery to find out which lymph node the
radioactive substance has travelled to. This is the sentinel node, and is
removed during surgery.
Another technique is to inject a blue dye around the breast cancer. The
injection is given in the operating theatre just before breast surgery. The
surgeon can see and remove the sentinel node because it turns blue when the
dye travels to it. Your urine may be blue for the next 24 hours after surgery,
and the skin of your breast may be blue. The blue colour will fade over time.
After the sentinel node has been removed, a pathologist examines it for
cancer cells. If cancer cells are found, further surgery to remove more lymph
nodes, and/or radiotherapy to the area may be needed. If the pathology tests
are done during the operation and cancer cells are found, it is sometimes
possible to do the additional surgery during the same operation. However,
a second operation is sometimes needed.
Currently there is not enough evidence to support the use of sentinel node
biopsy outside a clinical trial. A clinical trial, called the Sentinel Node versus
Axillary Clearance (SNAC) Trial, is now under way in Australia. The SNAC
Trial aims to compare sentinel node biopsy with the standard surgery
(axillary clearance or axillary node dissection). Ask your doctor about the
SNAC Trial if you'd like to find out more about it. See pages 120-123 for
information about clinical trials.

so
Questions you may want to ask about
breast surgery
Here are some questions that you can use as a guide or starring point for
getting more information about surgery:
• Exactly what is involved in each type of surgery?
• How much breast tissue will you remove?
• Where will the scarfs be and what will it/they look like?
• Can you show me pictures of other women who have had this surgery?
• What are the advantages and disadvantages of the different types of
surgery for my situation?
• How will I feel after surgery?
• How will I look after surgery?
• How long will I be in hospital?
• Will I have a drainage tube after my operation?
• How long will I take to recover?
• How long will I need to be off work?
• Will I be able to play sportS or lift things?
• Are there any side effects from this surgery?
• Can I reduce my risk of side effects? How?
• Who should I contact if side effects happen?
• How much will the surgery cost?
• If I have surgery, is breast reconstruction an option?
• If I want a breast reconstruction, can it all be done in the same operation?
• Where and when can I get a breast prosthesis?

51
 Radiotherapy

This chapter is designed to help you make decisions about radiotherapy, and
to prepare you for what to expect during and after treatment. Information
in this chapter includes:
• when radiotherapy is considered an option, and how effective it is
• what radiotherapy involves
• side effects of radiotherapy
• how you can take care of your skin during radiotherapy
• questions you may want to ask about radiotherapy.

Introduction to radiotherapy
The main aim of radiotherapy is to destroy any breast cancer cells
that may be left in:
• your breast (after breast conserving surgery), or
• the breast tissue left on your chest (after mastectomy).

Radiotherapy uses X-rays (controlled doses of radiation) to destroy cancer

cells. It is usually given after surgery to the breast. Radiotherapy is a
'localised' treatment, which means it treats only the area of your body it's
aimed at. Your radiotherapy treatment aims to destroy cancer cells that may
remain in your breast after breast conserving surgery, or in any breast tissue
left on your chest after mastectomy. Occasionally radiotherapy is also used
to treat the lymph nodes in the armpit and/or lower neck.

52
When is radiotherapy considered an
option, and how effective is it?
• After breast conserving surgery: radiotherapy to the breast is recommended
• After mastectomy: radiotherapy to the chest is sometimes recommended
• After either rype of breast surgery: radiotherapy to the lymph nodes in
the armpit and/or lower neck is occasionally recommended.

Talk to your doctor about how radiotherapy may benefit you.

Radiotherapy to the breast:

after breast conserving surgery

L!adiotherapy is recommended after breast conserving surgery.

After breast conserving surgery, radiotherapy can mean:

• less risk of the breast cancer coming back in the same breast
• less risk of needing further surgery
• increased likelihood of surviving breast cancer.

Radiotherapy to the chest wall:

after mastectomy

Radiotherapy is sometimes recommended after mastectomy.

It is not very common to have radiotherapy to the chest wall after a

mastectomy, but sometimes women have radiotherapy if they are considered
to be at highet risk of the breast cancer coming back in the breast tissue on
their chest.

53
 For women who have a higher risk of the cancer coming back in the
breast tissue after mastectomy, radiotherapy can mean:
• less risk of breast cancer coming back in the breast tissue left on
the chest
• increased likelihood of surviving breast cancer.

Defining higher risk:

Mter mastecromy, women have a higher risk of breast cancer coming back in
the breast tissue left on the chest if:
• cancer cells are found in many lymph nodes, or
• the cancer is large, or
• the surgical margin isn't considered 'clear' (see page 18 fOr infOrmation
about the surgical margin).

Even if the above facrors don't apply ro you, your doctor may still
recommend radiotherapy if:
• cancer cells are found in the lymphatic vessels in the breast (see page 45
fOr details oflymphatic vessels), and/or
• the grade of the cancer is high (see page 18 fOr details ofcancer grade).

Radiotherapy to the lymph nodes:

after breast conserving surgery or mastectomy

Radiotherapy to the lymph nodes in the armpit and/or lower neck

is occasionally considered an option after breast conserving surgery
or mastectomy.

Radiotherapy ro lymph nodes in the armpit also includes radiotherapy ro

lymph nodes in the lower neck.

54
However, sometimes radiotherapy is given to the lower neck without
radiotherapy to the armpit. If you receive radiotherapy to the lymph nodes,
your doctor can explain which lymph nodes are being treated and why.

It is not very common to have radiotherapy to the lymph node. However,

radiotherapy to the lymph nodes may be considered if:
• you do not have surgery to the armpit, or
• you have a higher risk of the breast cancer coming back in the lymph
nodes in the armpit or in the lower neck.

Radiotherapy to the lymph nodes without surgery to the armpit to remove the
lymph nodes may be used for women who:
• are elderly
• have serious health problems
• choose not to have surgery.

For women who have a higher risk of cancer coming back in

the armpit after surgery to remove lymph nodes, radiotherapy
can mean:
• less risk of breast cancer coming back in the armpit.

Defining higher risk:

After removal of lymph nodes, women have a higher risk of breast cancer
coming back in the armpit if:
• there is a chance that not all of the cancer cells were able to be removed
from the armpit during surgery.

55
What does radiotherapy involve?
Who manages radiotherapy treatment?
A radiation oncologist specialises in treating cancer with radiotherapy. He
or she will advise you whether radiotherapy could be useful in the
management of your breast cancer, and what sort of risks may be involved.

He or she will also calculate the appropriate dose and duration of your
radiotherapy, and answer any questions you may have.

A radiation therapist works the radiotherapy machines, under the direction

of a radiation oncologist. See Figure 5, page 57.

What should I expect, if I have radiotherapy?

Having radiotherapy means that X-rays will be used to destroy any cancer
cells that may be left after surgery.

Usually you will start radiotherapy 3-6 weeks after surgery. The starting
time depends on the availability of services, and how quickly your wounds
from surgery heal. If you also have chemotherapy, you will probably have
radiotherapy after the chemotherapy has finished (although the order in
which you have treatments depends on your situation).

Before you start radiotherapy, you will have a planning VISit at the
radiotherapy centre. During this visit a radiotherapy simulator is used to
plan your treatment.

In planning for treatment, marks will be put onto your skin so the radiation
therapist will know where to direct the radiotherapy. These marks are small,
and can be either temporary or permanent. If the marks are temporary, you
need to be careful not to wash them off.

56
Once you start treatment, you will usually have radiotherapy once a day,
5 day a week, for 5 or 6 weeks. Radiotherapy treatments are given this often
in order to minimise side effects. If radiotherapy is given less often, each
treatment dose needs to be larger, and the side effects can be worse.

Each radiotherapy session will be in a treatment room, with a machine that

looks exactly like the simulator. The radiation therapist will leave the room
while the machine is turned on, but the therapist can still see you and there
is an intercom for talking to the therapist. If you feel upset or very anxious
while having rreatment, the therapist can turn off the machine and come
back into the room straight away.

You may need to spend lip to a total of 40 minutes at the radiotherapy

centre for each visit. You might have to wait for the treatment room to
become available, and yOll will also need time to change your clothes.
Although the actual treatments only take a minute or so, you will probably
be in the treatment room for about 10 minutes.

Figure 5: Receiving radiotherapy as treatment for breast cancer

57
Where will I have radiotherapy?
Radiotherapy is available in some hospitals or specialised clinics, in capital
cities Ot major regional rowns. ot all hospitals can provide radiothetapy.
Your surgeon or radiation oncologist, or perhaps your GP if you live in a
rural area, will tell you abour the nearest centres that offer radiotherapy. If
you need ro travel long distances to a radiotherapy centre, you might be able
ro get some financial support ro help you with travel and accommodation
costs. See pages 166-168 fir details offinancial support.

Important facts about radiotherapy

Receiving radiotherapy is painless. However, you may find that yOLl have
some discomfort or pain afterwards. See pages 58-60 fir a list of what to
expect during and after radiotherapy.

Radiotherapy does not make you radioactive.

What are the side effects

of radiotherapy?
Radiotherapy can have some side effects. ome of these can happen during
treatment, and some may develop months after treatment has finished.
These side effects are listed below. Not everyone experiences these side
effects, and some women don't have them at all.

Talk to your radiation oncologist, radiotherapist or nurse about any

side effects you are worried about, or think you may be developing.

58
Usually

Usually you can expect the following side effects during or after
radiotherapy:
• your skin on and around the treated area can become red and dry, much
like sunburn - this can begin as early as the second week of treatment,
and usually improves a few weeks after stopping treatment
• you will probably feel more tired than usual- this usually begins a week
or so after starting radiotherapy, and lasts for about 2-4 weeks after
treatment has ended
• your skin can start to look darker than usual - your skin may stay that
way for a few months after treatment, but the colour will fade with time
• you will probably be unable to breastfeed from the breast that has been
treated with radiotherapy (see page 129 fOr details of breast/eeding after
radiotherapy to the breast).

Sometimes

You might experience one or more of the following side effects during or
after radiotherapy:
• your breast or chest may feel tender, and you may feel occasional aches
or twinges - this may continue for a year or more after treatment has
finished, but the aches usually become milder and less frequent, and
eventually settle with time
• your breast may become slightly swollen - this can happen during
treatment or some months after treatment has finished, and usually
settles with time (but it can take up to a few years)
• you may find the firmness of your breast increases - this can happen
during treatment or some months after treatment has finished (the
firmness usually lessens with time, but your breast might be
permanently firmer than it was before treatment)

59
• your ueated breast may evemually be slightly smaller rhan rhe orher breast
• the skin on your breast may start to peel or even blister towards the
middle or end of your ueatment - this usually settles within weeks of
finishing treatment
• you could develop lymphoedema ( welling of rhe arm and/or breast) if
you have radiotherapy to the armpit - lymphoedema can develop
monrhs or even years after ueatmem has finished (see pages 124-126for
details oflymphoedema and its management)
• you might lose hair in your armpit if you have radiothetapy to the
armpit - the hair on your head will not be affected
• you could develop a sore throat if you have radiotherapy to the lower
neck - if this happens, talk to your doctor about it.

Rarely

It is unlikely, but possible, that you could experience the following during
or after radiotherapy:
• blood ve el could become visible on mall areas of the skin of your
breast, making the skin in these areas look red or purple.

The following ide effects are very rare but can be quite serious. Please talk
to your radiation oncologist if you think you may be developing any of rhe
following:
• inAammation of your lung, called pneumonitis - symptoms include a
dry cough, a mild fever, shorrnes of breath and tiredness, and can
develop up to 6 months after radiotherapy (treatmem is available, and
pneumonitis usually lasts for less than a momh)
• pain in your ribs
• ribs at risk of fracturing, due to the radiotherapy weakening your bones.

Remember that these side effects are rare. The benefits of radiotherapy are
usually considered to ourweigh the risks of these rare side effects.

60
How should I take care of my skin
during radiotherapy?
Radiorherapy can cause your skin to become more sensLtlve during
rrearment. The following is a guide for looking after your skin during your
course of radiotherapy.

The 'DOs' of skin care The 'DON'Ts' of skin care

• Where possible, keep your skin • Don't use creams or lotions in

clean and dry.
• To keep your skin clean:
o shower using warm warer
o wash wirh mild, unperfumed
soaps or a sorbolene cream
(check with your doctor,
radiarion therapist or nurse
before using soaps or creams).
• After washing, gently par the
skin dry.
• To keep the area dry, try using
corn starch or ralcum powder
(non-scented) in skin folds
instead of deodorant.
• An electric shaver can be used in
or around the treatment area.
• You can continue to wear a bra
during treatment:
o cotton bras can be more
comfortable to wear than
synthetic bras
the treated area without first
checking with your doctor, nurse
or radiation therapist.
• Don't use deodorants, perfumes,
makeup or sunscreen in or near
the area that is treated - tl1ese
producrs can make the skin
more likely to be damaged.
• Don't rub or massage the skin
that has been treared.
• Don'r expose rhe treared area to
exrreme temperarures:
o avoid hot water borrles
o avoid ice packs.
• Avoid using blade razors, which
can irrirare rhe skin.
• Avoid wearing bras wirh
underwire and/or with a shaping
seam across the centre, as these
can irritare your skin.

61
The 'DOs' of skin care The 'DON'Ts' of skin care

o you may find ir more • Avoid any sunlighr on rhe

comfonable ro wear a corron treared area during your course
handkerchief or corron T-shin of radiorherapy:
under your bra, if your skin o don'r sunbake
becomes very sensirive.
o don'r go ro a solarium.
• Wear loose-fitring corron
• Don'r go swimming wirhour firsr
clorhing over rhe trearment area:
checking wirh your doctor.
o conon is cooler and more
absorbent rhan syntheric
marerials
o some women find thar old,
worn-in conon T-shins are
mosr comfonable.
• If you wish ro go swimming
during rrearment:
o check firsr with your docror,
before going swimming
o rinse rhoroughly wirh fresh
warer afrer swimming (ro
prevent skin reacrions)
o change our of your swimming
costume immediarely (ro
prevent skin reacrions).
Adapted with permission from Looking after your skin during radiation therapy, a pamphlet
developed by Radiation Oncology Network, Westmead and Nepean Hospitals, ydney.

62
After the course of radiotherapy:
• you may go back to your normal skin care routine
• it is suggested that you always use sunscreen
whenever the treated area is exposed to the sun.

If you have any questions about taking care of your

skin during radiotherapy, ask your radiation therapist,
nurse or radiation oncologist.

Questions you may want

to ask about radiotherapy
Here are some questions that you can use as a guide or starting point for
getting more information about radiotherapy:
• How will radiotherapy benefit me?
• Where can I have radiotherapy?
• How long will I need to have radiotherapy?
• What are the side effects of radiotherapy?
• How can I deal with the side effects?
• How long will I take to recover from the side effects?
• Who should I contact if side effects happen?
• Will I still be able to work?
• Willl still be able to drive? Is it safe for me to drive myself to and from
the radiotherapy centre?
• When will I have radiotherapy if I am also having hormonal therapy?
• When will I have radiotherapy if 1 am also having chemotherapy?
• Will radiotherapy affect whether or not I can have a breast reconstruction?
• How much will radiotherapy cost?

63
• If I have to travel far to a radiotherapy centre, can I get any
financial help?
• If I have to travel far to a radiotherapy centre, can I get any help to find
or pay for accommodation?

64
 Hormonal therapies

This chapter is designed to help you make decisions about hormonal

therapy, and to prepare you for what to expect during and after treatmenr.
Information in this chapter includes:
• evidence about the effectiveness of hormonal therapies
• how to decide whether to use hormonal therapies
• clifferenr rypes of hormonal therapies
• side effects of hormonal therapies
• questions you may want to ask about hormonal therapies.

Introduction to hormonal therapies

Hormonal therapies include:
• anti-estrogens (for example, tamoxifen)
• ovarian treatments (called ovarian ablation)
• aromatase inhibitors (newer drugs that are being researched).

Hormonal therapies may be Llsed in addition to surgery and radiotherapy

for treating your breast cancer. Hormonal therapies can also be used in
addition to chemotherapy.

65
 The aim of hormonal therapies is to:
• destroy any cancer cells that could be left in the breast after
surgery and/or radiotherapy
• destroy any cancer cells that might have spread outside the
breast and armpit, but cannot be detected
• reduce the risk of a new breast cancer developing in either breas~

Hormonal therapies are called systemic treatments because they work on

the whole body co conrrol cancer. Systemic treatmenrs aim co desrroy any
cancer cells that could have spread outside the. breast or armpit area but
cannot be detected.

How do hormonal therapies work?

The growth of some breast cancers is affected by estrogen, one of the female
hormones in the body. In breast cancer, most hormonal therapies work by
decreasing the amounr of esrrogen in the body or by stopping the cancer
cells from getting estrogen. If your cancer cells have hormone recepcors on
them, hormonal therapies can help destroy any remaining cancer cells, and
help prevenr the cancer from returning.

Who can benefit from hormonal therapies?

I Hormonal therapies are usually recommended for women who have

hormone receptors on their cancer cells.

As discussed in Chapter 4, breast tissue removed during breast surgery is

sent to a pathologist for tests. The aim of one of these tests is co see whether
the cancer cells have hormone receptors on them, including estrogen
receptors (ER) and/or progesterone receptors (PR). This information is
included in your pathology report.

66
If your cancer cells have estrogen receptors on them,
this means that your cancer's growth i affected by
estrogen. Having progesterone receprors on the
cancer cells is a sign that the cells also have
estrogen receptors.

If your breast cancer cells have estrogen receptors on

them, they are said to be estrogen-receptor positive.
If your breast cancer cells do not have estrogen
receptors on them, they are said to be estrogen-
receptor negative.

What is the evidence about the

effectiveness of hormonal therapies?
Evidence about the benefits of hormonal therapies for women with
hormone receptors on their cancer cells is listed below. Ask your doctor how
hormonal therapies might benefit you.

A review of studies about hormonal therapies shows that for women with
hormone receptors on their cancer:

Treatment with tamoxifen (an anti-estrogen, see page 69) can mean:
• less risk of breast cancer coming back in the breast after breast
conserving surgery, or in the breast tissue left on the chest
after mastectomy
• less risk of breast cancer developing in the opposite breast
• less risk of cancer (from the breast) spreading to other parts of
the body
• increased likelihood of surviving breast cancer.

67
 Ovarian treatments (see page 70) in women who have not yet reached
menopause, can mean:
• less risk of breast cancer coming back in the breast after breast
conserving surgery, or in the breast tissue left on the chest
after mastectomy
• less risk of breast cancer developing in the opposite breast
• less risk of cancer (from the breast) spreading to other parts of
the body
• increased likelihood of surviving breast cancer.

For women with hormone receptors on their cancer:

The use of tamoxifen and chemotherapy to treat early breast cancer

can be more effective for some women than tamoxifen alone.

Deciding whether to use

hormonal therapies
Hormonal therapies are usually considered if a woman has hormone
receptors on her cancer cells. Hormonal therapies are usually given In
addition to surgery and radiotherapy (if applicable), and sometimes in
addition to chemotherapy.

Your deci ion about whether or not to have hormonal thetapy, and, if 0,

which type of therapy to have, will depend on whethet you have:

• hormone receptors on your cancer
• a higher risk of the breast cancer coming back in the breast, or spreading
outside the breast and armpi t area (see pages 20-21 fOr features ofbreast
cancer that make the breast cancer more or Less Likely to come back or spread)

68
• reached menopause - this will affect the type of hormonal therapy you
may consider
• a preference for a type of therapy.

A medical oncologist speciali es in rreating cancer with hormonal therapy

and chemotherapy. He or she will tell you whether hormonal therapies
could be useful in the treatment of your breast cancer, and let you know
about any risks. Alternatively, your surgeon, radiarion oncologist or GP
might manage your hormonal therapy.

Ask your specialist whether hormonal therapies could benefit you, which
types may be considered for your situation, and the side effects of the
different therapies. You might also wish to discuss the combination of
hormonal therapy and chemotherapy, and whether this could benefit you.

It is important to weigh up the benefits and side effects of the different

hormonal therapies for your situation.

What are the different types of

hormonal therapies?
Anti-estrogens
Anti-esrrogens work by stopping cancer cells from getting esrrogen.

The most commonly used anti-esrrogen is tamoxifen. See page 61 for details
ofthe effectiveness oftamoxifen. Other anri-estrogens are being developed, but
have not yet been fully researched.

Tamoxifen is taken as a tablet once a day, usually for 5 years. Studies are
currently being conducted to find our whether women would benefit from
taking anti-estrogens for longer than 5 years.

Anti-estrogens can be used by women of all ages who have hormone

receptors on their cancer cells.

69
Ovarian treatments
Ovarian treatments (called ovarian ablation) work by stopping the ovaries
from producing estrogen.

Ovarian treatments include:

• radiotherapy to the ovaries
• surgery to remove the ovaries
• injection of drugs (called LHRH analogues, such as goserelin) under the
skin on your abdomen (stomach).

Ovarian treatments are usually recommended for women who have not yet
reached menopause and who have hormone receptors on their cancer cells.

Aromatase inhibitors
Aromatase inhibitors work by stopping or 'inhibiting' estrogen from
being produced.

Aromatase inhibitors are sometimes used as an alternative to anti-estrogens

for women with early breast cancer who have already experienced
menopause. The long-term benefits and ide effecrs of aromatase inhibitors
are still being investigated in clinical trials. Exan1ples of aromatase inhibitors
include anastrozole, letrozole and exemestane.

When are the different hormonal

therapies recommended?
Whether or not you have already reached menopause can affect the type
of hormonal therapy that may be recommended to you. See Table 4, page 71.

70
Table 4: The use of different hormonal therapies to treat women with
early breast cancer

Women who have: Women who have:

hormone receptors on their hormone receptors on their
cancer cells and cancer cells and
who have not yet who have already
reached menopause experienced menopause

Anti-estrogens or Anti-estrogens or
ovarian treatments aromatase inhibitors

This table is a guide only. You and your doctors should consider whether
hormonal therapy is an option, and if so, which therapies are most
appropriate for your particular situation.

What are the side effects of

hormonal therapies?
Different types of hormonal therapies have different side effects. Also, each
woman is different in how she responds to a particular hormonal therapy.

The main side effects of the different types of hormonal therapies are
discussed below. If you notice any of these side effects, or any other
symptoms you think may be due to your hormonal therapy, talk to your
doctor as soon as possible.

71
Side effects of anti-estrogens
Some women will have few or no side effects from taking ami-estrogens.
Possible side effects of anti-estrogens are listed below:

• Menopausal symptoms
Menopausal symptoms, such as hot flushes and vaginal dryness, can be
experienced while taking ami-esrrogens. The symptoms usually (Op
when your treatmenr stops. However, sometimes the menopause is
permanem. See pages 132-134 fOr details of menopausal symptoms and
ways to manage them.

If you are sexually active and have not yet reached menopause,
it is possible you could become pregnant, even if your period
stops, while you take anti-estrogens. It is recommended that you
use contraceptives that do not affect your hormones, such as
condoms or diaphragms.

• Blood clots
This is a rare side effect of anti-estrogens. Talk (0 your doctors if you have
had blood clots before, and ask how to help prevem blood clots.

Contact your doctor immediately (or hospital emergency

department if your doctor isn't available) if you have chest pain,
or if you notice any pain, warmth, swelling or tenderness in an
arm or leg.

If you develop a blood clot, make sure that the doctor managing your
hormonal therapy knows about it, as changes may need (0 be made (0
your treatment.

If you are having surgery or if you fracture a bone (for example, if you
break your leg) while taking ami-esrrogens, tell your doctor. In some
cases you might need to stop taking the anti-eStfogens fOf a short while.

72
• Stroke
This is a rare side effect of anti-esrrogens. Talk ro your docrot abour
how ro help ptevent stroke.

• Cancer of the uterus

This is a rare side effect of anti-estrogens, affecting women who have
already reached menopause. The risk is very small.

I See your doctor as soon as possible if you have any irregular

l vaginal bleeding.
Note that irregular vaginal bleeding doesn't necessarily mean that you
have cancer of the uterus, but it is important ro find our the cause of the
bleeding as soon as possible.

• Changes in vision
This is a very rare side effect of anti-esrrogens.

See your doctor as soon as possible if you notice any changes to

your vision.

Anti-esrrogens can also have benefits in addition ro rreating cancer, such as:
• lessening your chance of getting osteoporosis (a disease causing frail
bones, which often develops in older women)
• lowering your cholesterol level and lessening your chance of getting
heart disease.

Note that there is no evidence that taking anti-esuogens leads ro putting on

a lot of weight.

73
Side effects of ovarian treatments
Some drugs used as ovarian treatments (those injected under the skin on the
abdomen) can cause menopausal symptoms. Symptoms while taking these
drugs are usually temporary, and stop once your treatment has finished.
However, sometimes the menopause is permanent. See pages 132-134 fOr
details ofmenopausal symptoms and ways to manage them.

Surgical removal of the ovaries and radiotherapy to the ovaries will cause a
permanent menopause. If that happens, you will have menopausal
symptoms and will not be able to have children naturally after treatment.
See pages 129-132 fOr infOrmation about infertility; see pages 132-134 fOr
details ofmenopausal symptoms and ways to manage them.

Side effects of aromatase inhibitors

The side effects of aromatase inhibitors are still being studied in clinical
trials. Evidence from these trials suggests that aromatase inhibitors may have
fewer side effects than other hormonal therapies.

The possible side effects of aromatase inhibitors are similar to the side effects
of anti-estrogens (see pages 72-73). However, the risks of cancer of the uterus,
blood clots and stroke appear to be less with aromatase inhibitors. There is
more of a risk of pains in joints and bones with aromatase inhibitors.

Evidence to date suggests that aromatase inhibitors do not have the same
additional benefits as anti-estrogens. For example, the protection against
osteoporosis seems to be less with aromatase inhibitors.

74
Questions you may want to ask about
hormonal therapies
Here are some questions that you can use as a guide or starting point for
getting more information about hormonal therapies:
• How can I benefit from hormonal therapies?
• What are the side effects and risks of the hormonal therapy you
are recommending?
• Who should I contact if side effects happen?
• How much will the hormonal therapy that you are recommending cost?
• What does surgery or radiotherapy to the ovaries involve?
• When will I have hormonal therapy if I am also having chemotherapy?
• When will I have hormonal therapy if I am also having radiotherapy?
• How will the hormonal therapies affect my fertility in the short term
and in the long term?
• Will I still be able to have children?
• Do I need to use contraception if I am having hormonal therapy?
• Will I have symptoms of menopause?
• If so, will my symptoms of menopause be temporary or permanent?
• How can symptoms of menopause be managed or reduced?

7S
 Chemotherapy

This chapter is designed to help you make decisions about chemotherapy,

and to prepare you for what to expect during and after treatment.

This chapter contains information about chemotherapy, including:

• evidence for the effectiveness of chemotherapy
• how to decide whether to have chemotherapy
• what chemotherapy involves
• side effects of chemotherapy
• weighing up the benefits and side effects of chemotherapy
• questions you may want to ask about chemotherapy.

Introduction to chemotherapy
Chemotherapy can be used in addition to surgery and radiotherapy for
treating breast cancer. Chemotherapy can also be used in addition to
hormonal therapies.

The aim of chemotherapy is to:

• destroy any cancer cells that could have spread outside the
breast and armpit, but cannot be detected
• destroy any cancer cells that could be left in the breast.

Chemotherapy is called a systemjc treatment because it works on the whole

body to control cancer. Systemic treatments aim to destroy any cancer cells

76
that may have spread into areas outside the breast area and armpit area, but
cannot be detected.

How does chemotherapy work?

Treatment with chemotherapy involves taking special drugs that kill cells in
the body that are reproducing rapidly or 'rapidly dividing', such as cancer
cells. This means that as well as killing cancer cells, some normal cells that
are also rapidly dividing can be damaged. The main areas in your body
where normal cells are damaged are the mouth, stomach and bowel, skin,
hair and bone marrow. The damage to normal cells causes the side effects of
chemotherapy. However, normal cells repair damage more efficiently than
cancer cells, and the normal cells can recover.

What is the evidence about the

effectiveness of chemotherapy?
Evidence about the benefits of chemotherapy is outlined below. Ask your
doctor how chemotherapy might benefit you.

Chemotherapy given to women with early breast cancer can mean:

• less risk of cancer from the breast spreading to other parts of
the body
• increased likelihood of surviving breast cancer
• less risk of breast cancer coming back in either breast.

For women with hormone receptors on their cancer:

The use of chemotherapy and tamoxifen (a hormonal therapy: see

page 69) to treat early breast cancer may be more effective for some
women than chemotherapy alone.

77
Deciding whether to have
chemotherapy
Ask your doctor whether you might benefit ftom
"I originally didn't
want chemotherapy chemotherapy, which drugs may be considered for
because I didn't want your situation, and what the side effects might be. You
to look sick. I got a might also wish to discuss the combination of
lot of information
chemotherapy and hormonal therapy, and whether
about that, and
came back a few this could be beneficial for you.
weeks later with
a decision that The decision about whether or not to have
I would have it." chemotherapy and, if so, which type, will depend
on the following:
• whether you have a higher risk of the breast cancer spreading outside the
breast and armpit area (see pages 20-21)
• whether you have hormone receptors on your cancer and will have
hormonal therapy:
o women are more likely to be recommended chemotherapy if they
do not have hormone receptors on their cancer cells
o if you're having hormonal therapy, you can have chemotherapy
a well - chemotherapy is usually given first, before you start
hormonal therapy
• your general health
• your preference.

It's important to weigh up the benefits and side effects of chemotherapy for
your SItuatIOn.

78
What does chemotherapy involve?
Who manages chemotherapy treatment?
A medical oncologist specialises in treating cancers "The oncologist said
with chemotherapy and hormonal therapy. He or she c/lemo could prove to
will explain to you which chemotherapy drugs are be helpful for me. But
if I really didn't want
recommended for your situation, the possible side
to do it, then that
effects, how long you may need to take chemotherapy would be up to me."
drugs, and where you can have chemotherapy.
If you live in an area where there is no medical oncologist (such as a rural
area), your GP or surgeon may manage your treatment. He or she will do
this by regularly talking about your situation with a medical oncologist.
Alternatively, you may decide to travel to the nearest city or regional town
for treatment that is managed by a medical oncologist.

Where will I get chemotherapy?

Usually you can have chemotherapy in a hospital or special clinic, without
needing to stay overnight. Each treatment can take between half an hour
and a few hours, depending on rhe type of drugs you're receiving.

In some regional or rural areas, it might be possible for a specialist oncology

nurse to visit you and give chemotherapy at home.

How are chemotherapy drugs given?

The most common way of having chemotherapy is by injection into a vein
(intravenously or IV), but sometimes chemotherapy drugs are taken as
tablets. IV treatment involves receiving the drugs by a 'drip' into the vein,
usually on your hand or arm. See Figure 6, page 80. Some women have
chemotherapy treatment that is a combination of tablets and IV.

Chemotherapy drugs are absorbed into the blood and travel around the
body so they can find and destroy any remaining cancer cells.

79
Figure 6: Receiving chemotherapy as treatment for breast cancer

80
Which chemotherapy drugs will I have?
There are many different types of chemotherapy drugs. Because different
chemotherapy drugs kill the cancer cells in different ways, often more than
one drug is used to maximise the effect of the chemotherapy. This is called
combination chemotherapy.

The most effective chemotherapy treatments for women with early

breast cancer are ones that:
• use more than one drug (combination chemotherapy), and
• last several months.

Different chemotherapy drugs, or combinations, are used to treat different

women. There is evidence that some chemotherapy drugs are slightly more
effective in treating breast cancer than others, but can have worse side effects.

If you're a younger woman, it's important to note that some chemotherapy

drugs can cause permanent menopause. See pages 132-134 for details of
menopausal symptoms and their management. If your menopause is
permanent, this means that you will not be able to have children naturally.
See pages 129-132 for information about infertility.

Discuss these issues with your doctor. You may want to ask him or her about
the type of chemotherapy drugs recommended for you, and their possible
side effects.

It's a good idea to keep a record of any chemotherapy, hormonal, or other

drugs that you're taking. This will be particularly useful if you need to
change doctors at any stage.

81
How often will I have chemotherapy?
"For me, the six Chemotherapy i usually given in 'cycle '. This means
months o( chemo were you have a short period of treatment, folio" ed by a
two weeks o( (eeling rest period, followed by another period of treatment,
reolly ordinory, but
then (eeling okay (or and so on. During the rest period you don't receive
the next two weeks. treatment. This gives your body a chance to rebuild
I would get bock to healthy cells and regain Strength.
normal and I would
think, 'Yeah, I can The length of your trearment and rest periods will
do this',"
depend on the type of breast cancer you have and the
type of chemotherapy drugs you're receiving. Some chemotherapy treatment
programs last for 3 months, and others last for 6 months.

Below are two examples of chemotherapy cycles.

Example 1: Rebecca has chemotherapy treatment in a 3-week cycle. She

has chemotherapy by N treatments (injection by a 'drip' into the vein) every
third Wednesday. Her treatment will be finished in 12 weeks. Rebecca's
chemotherapy treatment calendar looks like this:

Week MOD Tue Wed Thu Fri Sat Sun

I ---
N
I I
aearmem
I

2 Cycle 1
~

3
IV
4 treaanent

5 Cycle 2

and so on, until week 12.

82
Example 2: Carol has chemotherapy in a 4-week cycle. She has IV treatments
(injection by a 'drip' into the vein) on two Mondays in a row, followed by a
2-week break, and so on. She also takes chemotherapy tablets at home during
the two 'treatment' weeks of the cycle. Her treatment will be finished in 24
weeks. Carol's chemotherapy treatment calendar looks like this:

Week Mon Tue Wed Thu Fri Sat Sun

2
- IV
treatment
tablet
TV
treatment
I-- ~
tablet tablet tablet tablet tablet tablet

tablet tablet tablet tablet tablet tablet tablet Cycle 1

IV
5 treatment
r;:blet tablet tablet tablet tablet tablet tablet
TV
6 treatment
/"""--
Cycle 2
tablet tablet tablet tablet tablet tablet tablet

and so on, until week 24.

If you have treatment by an IV drip, you usually have some choice about
which day of the week you have the treatments.

The success of chemotherapy treatment will be affected by the dose

intensity. This means that it is important that the prescribed strength of
chemotherapy doses is maintained, and that treatment is on time.

83
Sometimes changes are made to the strength of doses, or chemotherapy is
delayed for a few days, in order to manage side effects of treatment. If you
are concerned about changes to your dose intensity, ask your doctor about
the benefits and risks of the changes.

Current evidence does not support the use of very high doses of
chemotherapy for early breast cancer, unless in a clinical trial.
These treatments are usually called high-dose chemotherapy with
stem cell rescue.

See pages 120-123 fOr infOrmation about clinicaL triaLs.

What are the side effects of

chemotherapy?
Research has shown that more than 50% of cancer patlems recelVlng
chemotherapy have some side effects, ranging from nausea, tiredness
and hair loss, to concern about family members, depression and dread
of treatment.

Different drugs affect individual women differently. It's possible that you
may experience fewer or more side effects with a particular drug, than
another woman on the same drug.

It's possible to have chemotherapy with very few side effects. If this happens
to you, it means that you're fortunate - it does not mean that the
chemotherapy isn't working.

If you experience side effects, even if you don't think they're serious,
it's important to discuss them with your doctor.
Most side effects of chemotherapy can be managed with medical care.

84
BefOre you choose treatment, ask your doeror to tell you "Losing my hair was
which side effects are common with the particular probably a bad thing,
drugs you're being offered. but I have found that
the anticipation of
After starting chemotherapy, tell your doctor about any everything is worse
than when it
side effects you get from the treatment, so they can
actually happens."
be managed.

Ask your doctor for an out-of-hours contact number, so you can get
help if you develop any serious side effects.

Possible side effects of chemotherapy drugs are listed in the following tables.
See later pages for details ofthese side effects.

Common side effects of chemotherapy

These side effects are more common than others, but you are unlikely
to develop many or all of them:
• nausea and vomiting (see pages 86-87)
• fatigue (see page 87)
• hair loss (see pages 88-89)
• diarrhoea (see page 89)
• constipation (see page 89)
• weight gain (see page 89)
• weight loss (see page 89)
• depression (see pages 89-90)
• anxiety (see page 90)
• menopausal symptoms (temporary or permanent) (see page 90)
• sexual difficulties (see page 91)
• mouth ulcers (see pages 91-92)
• skin problems (see page 92)

85
 Less common side effects of chemotherapy

• feeling vague (see page 92)

• nerve and muscle problems (with taxane drugs only) (see page 93)

Rare side effects of chemotherapy

Although rare, these side effects can be serious, and you need to see a
doctor as soon as possible if you develop one of these:
• infection due to a low level of white blood cells (see page 93)
• bleeding or bruising (see page 94)
• kidney or bladder problems (see pages 94-95)
• heart problems (with anthracycline drugs only) (see page 95)
• bone marrow problems (see page 95)
• allergic reactions (see page 95)

Keeping a diary with details of side effects (such as what they are, when
they happen, how long they last for) might help you to discuss them with
your doctor.

Tell your doctor if you have any side effects from chemotherapy.
Treatment can be given to improve your symptoms, or your
~emotherapycan be adjusted if necessary.

Information about each side effect, and what you can do if you experience
that side effect, is discussed over the next few pages.

Nausea and vomiting

It's quite common to feel nausea (the feeling that you might be sick) when
having chemotherapy. Nausea can last from a few hours to a few days.
Chemotherapy can also make some women vomit. The good news is that

86
nausea and vomiting can usually be controlled with "If I start to feel tired
drug called anti-emetics. These drugs are given 1'/1 think 'rlgh~ JUst slow
routinely with chemotherapy. Eating smaller meals down a bit'. I'm
learning to say 'no I'm
often, in tead of large meals can al 0 help. not doing it today, 1'/1
do it later or 1'/1 get
After having one or more treatments, it is normal to someone else to help
feel some anxiety about the next treatment/so Some me do it'."
women feel very anxious, which can cause them to
vomit before the treatment. This is called anticipatory vomiting. Talk to your
doctor if this happens to you.

Fatigue
Feeling tired is one of the main side effects of chemotherapy, and can last
3-6 months after your treatment is finished. Fatigue can also be due to
anaemia, which means that there are fewer red blood cells in your blood.
This can be caused by chemotherapy. To see whether you have anaemia,
your doctor will regularly do blood tests to check your blood cell count.

You might find it easier to cope with chemotherapy and feeling tired if you
can organise some practical help before you tart treatment. For example,
getting some help with childcare or making meals can help you cope, and
give you more time to yourself for recovery. See pages 166-168 fOr ways to
get financial and practical help.

Although resting is instinctive if you're feeling tired, new research has found
that exercise can help to reduce fatigue. Exercising, even during treatment,
may help you to feel less tired, and can also reduce your chance of weight
gain. Gentle exercise, like walking, is ideal, but some women find that more
strenuous exercise is helpful too. Check with your doctor about the level of
exercise that may be suitable for you.

87
Hair loss
Hair loss from chemotherapy can range from m ild thinning of the hair to
total hair loss (including body hair).

Not all chemotherapy drugs cause hair loss. Chemotherapy drugs such as
anthracyclines and taxanes cause hair loss. However, less than half of all
women taking CMF (a combination of drugs called cyclophosphamide,
methotrexate and fluorouracil) lose enough hair to wear a wig. Ask your
doctor to explain ro you the risk of hair loss from the chemotherapy drug/s
that is/are recommended to you.

If you do lose some of your hair, it will usually grow back within weeks
or months of ending chemotherapy. You might want to wear a scarf, hat,
turban or wig to cover your head while your hair grows back. When it does,
it could be a different texture and possibly a different colour.

If you're having treatment that might cause hair loss, there are some things
you can do that might help slow down the hair loss, such as:
• cut your hair quite short (long hair can fall out faster than short hair)
• use gentle hair products
• avoid blow drying your hair, having it permed or using curlers or tongs
• use a soft hair brush.

You might prefer ro find out about wigs, hats or scarfs before treatment.
For information about where to get a Wig, hat, scarf or turban call the
Cancer Helpline on 13 11 20.

For advice about dealing with changes to the way that you look while having
chemotherapy, you could go ro a Look Good Feel Better workshop. These are
free, and are available in capital cities and other major centres. For
information about workshops in your area, call the Cancer Helpline on
131120.

88
Although losing your hair may not seem serIOUS "When I went to my
compared with coping with breast cancer, many oncology clinic for
women find it distressing. Losing your hair may affect chemotherapy, I wore
a lot of bright clothes.
how you feel about yourself and your sexuality. Ir's
I just wanted to make
important to discuss your concerns with your docrors. myself feel good. To
make yourself feel
good, that's very
Diarrhoea and constipation important."
Some women have diarrhoea during chemotherapy
treatment. Ask your docror to recommend medication to control this.

Alternatively some women become constipated during chemotherapy. This

can be from the chemotherapy drugs, or from being less active or eating less
due to nausea. Some anti-emetics (anti-nausea drugs) can also cause
constipation.

Constipation can be treated by drinking more fluid, eating more fruit and
vegetables, and using laxatives. Ir's important to ask your doctor before using
any laxatives or medication for constipation.

Weight gain or weight loss

Some women having chemotherapy lose their appetite and lose weight,
while other women put on weight. If you lose your appetite, try ro eat small
meals and snacks as often as you can throughout the day. Doing gentle
exercise can help prevent weight gain. Talk with your docror about exercises
suitable for you, or phone the Cancer Helpline on 13 11 20 for
information about eating and exercise.

Depression
Some women feel depressed, sad or teary before, during and after
chemotherapy treatment. Some sadness or depression is normal. If your
feelings are severe, or interrupting things at home, or affecting your

89
relationships, talk to your doctor about how you're feeling. Effective
treatments are available. See pages 145-146 and 152-153 for information
about depression and how to get help.

Anxiety
Some women feel anxious, worried, nervous or distressed before, during and
after chemotherapy treatment. Some anxiety is normal. If your anxiety is
severe, or interrupting things at home, or affecting your relationships,
discuss this with your doctor. Effective treatments are available. See pages
146-147 and 152-153 for information about anxiety and how to get help.

Menopausal symptoms and

permanent menopause
Women who haven't yet reached menopause may have menopausal
symptoms during chemotherapy. See pages 132-134for details ofmenopausal
symptoms and their management.

Not all chemotherapy drugs cause permanent menopause, but some

do. The closer you are to the age of natural menopause, the more
likely it is that the menopause will be permanent.

If your menopause is permanent, you will be unable to have children

naturally after treatment. See pages 131-132 for information about
permanent inftrtility.

If your fertility is important to you, ask your doctor: _

r• if there are chemotherapy drugs that are less likely to make you I
infertile (and if so, how effective are they for your situation)
• about freezing some embryos before treatment, so that you
might be able to fall pregnant in the future.
L
90
Sexual difficulties ""ooked at
chemotherapy as a
Many women have some sexual difficulties during competition. There
chemotherapy treatment, and these can sometimes was Q ~nish;ng ribbon
and every day was
continue for a while after treatment has stopped.
a step closer."
Sexual difficulties can be caused by:
• menopausal symptoms (temporary or permanent)
• concern about rhe way you look, particularly if some of your hair falls
out during chemotherapy
• a general decrease in libido when feeling unwell and tired
• depression and anxiety.

See pages 150-151 for information about the efficts oftreatment on sexuaLity,
and suggestions for deaLing with sexuaL difficuLties.

Mouth ulcers
Some women taking chemorherapy drugs get mourh ulcers. Mourh ulcers
usually occur about 5-10 days after having chemorherapy drugs and clear
up wirhin 3-4 weeks. Sucking on ice while having treatment can help
prevent mouth ulcers from developing.

If you develop mouth ulcers, it's important that you brush your teeth and
gums with a very soft brush after every meal, to prevent infection. An
analgesic gel from the chemist can help telieve discomfort; and sodium
bicarbonate mouthwash can also be effective. Talk to your doctor before
using a mouthwash, as some mouthwashes can make ulcers worse. You
might also need to take pain relief such as paracetamol.

Sometimes chemotherapy can cause other infections in your mouth. Thrush

can develop in your mouth, and looks like white patches on your tongue or
mouth. old sores (herpes) can al 0 appear more frequently than usual

91
 while you're having chemotherapy. Talk ro your
docror abour any infecrions in your mouth, so
they can be treared.

Skin problems
Some women have minor skin problems while
rhey're having chemorherapy, such as red ness,
itching, peeling, dryness or acne. Some women's
nails become darkened, britrle or cracked. Most
skin and nail problems are not serious.

Some chemotherapy drugs may also mal<e your skin more sensitive ro the
sun and therefore more likely ro get sunburnr. If you're having these drugs,
it is recommended that you avoid being in the sun for long periods, and use
sunscreen when outdoors.

Seek medical assistance immediately (from your doctor or hospital

emergency department) if you develop a rash or sudden or severe
itching, or if you have difficulty breathing. You may be having a
severe allergic reaction.
----------

Feeling vague or'in a fog'

Some women feel vague or mildly confused or have memory problems while
having chemotherapy, and this can last for some months afterwards.
The causes are being studied. Ask your doctor about any symproms that
concern YOll.

92
Nerve and muscle problems
Some chemotherapy drugs can cause peripheral neuropathy during
treatment, although this is uncommon. Symptoms include feelings of
tingling, burning or numbness in the hands or feet. Sometimes women get
other nerve problems (such as a loss of balance) or muscle problems (such
as the muscles feeling weak or sore).

Tell your doctor about any nerve problems, so that your treatment
can be adjusted.

Infection (rare)
Chemotherapy can make you more likely to get an infection, although this
rarely happens. Infections can develop because the chemotherapy drugs can
affect the bone marrow and reduce the number of white blood cells being
produced. White blood cells are the cells that fight infections.

If chemotherapy affects your white blood cells this will usually happen 1-2
weeks after treatment. During chemotherapy treatment, your doctor will
regularly check your white blood cell count with blood tests.

Report any signs or symptoms of infection to your doctor

immediately (or to your hospital emergency department, if your
doctor isn't available).
If you have a fever (a temperature greater than 38°C), chills, or
severe sweats, seek medical attention urgently. This could be the
first sign of a serious, life-threatening infection. Immediate
treatment with strong antibiotics could be needed.

Other possible symptoms of infection are loose bowels, a burning sensation

when you urinate, a severe cough or sore throat, unusual vaginal discharge or

93
itching, and redness, swelling or tenderness around a wound, sore, pimple,
boil, or the site where you have had an IV drip for your chemotherapy.

Any infection you get during your chemotherapy treatment can be treated
effectively with antibiotics.

Bleeding or bruising (rare)

In rare cases, chemotherapy can make you more likely to bleed or bruise
easily. This happens because the chemotherapy drugs can affect the bone
marrow and reduce the platelets being produced. Platelets help stop
bleeding by making the blood clot.

If chemotherapy affects your platelets, this will usually happen 1-2 weeks
after treatment. Your doctor will check your platelet count while you're
having chemotherapy.

Tell your doctor as soon as possible about any signs or symptoms of

reduced platelets, such as: easy bruising; bleeding from gums or
nose; reddish urine; and black or bloody bowel motions.

If these signs develop during the night or on a weekend, you can phone the
out-of-hours number given to you by your doctor.

Any unusual bruising or bleeding during your chemotherapy treatment can

be treated by a platelet transfusion.

Kidney and bladder problems ( rare)

Some chemotherapy drugs may irritate the bladder or cause temporary or
(in very rare cases) permanent damage to the kidneys. Ask your doctor about
whether the drugs you are taking could have this effect.

94
Drinking plenty of fluid can help prevent kidney and bladder problems. If
you do develop these problems, it usually happens at least a few days after
chemotherapy treatment.

Contact your doctor as soon as possible if you experience: pain or

burning when ynu urinate; frequent urinatinn; a feeling that mu I
must urinate right away; reddish or bloody urine; fever or chills.

If these signs develop during the night or on a weekend, you should phone
the out-of-hours numbet given to you by your doctor.

Note that for some chemotherapy drugs, reddish urine for 24 hours after a
treatment is normal. Your doctor will tell you if this is the case with the
chemotherapy drug/s you are taking. Reddish urine caused by an infection
in the bladder or kidneys usually develops a few days or more after treatment.

Other rare or uncommon side effects

Other rare side effects of chemotherapy include:
• cardiac toxiciry (heart problems) - with drugs called 'anrhracyclines'
• problems with bone marrow - with drugs called 'anthraeyclines'
• allergic reactions - with drugs called 'taxanes'.

If these side effects develop during treatment the chemotherapy drugs will
be changed, or the dose decreased.

95
Weighing up the benefits and side
effects of chemotherapy
The list of side effects of chemotherapy
may seem long or overwhelming.
However, having chemotherapy can also
mean great benefits, including a higher
likelihood of surviving breast cancer.
See page 77 ftr details ofthe effectiveness
ofchemotherapy.

[ To make a decision about tbemothetapy, you need to weigh up the

possible benefits and side effects for you.

Questions you may want to ask

about chemotherapy
Here are some quesrions rhar you can use as a guide or starting point for
gerring more information about chemotherapy:
• How will chemotherapy benefit me?
• Which chemorherapy drug or drugs do you recommend for me? Why?
• If I do have chemotherapy, should I start it now or larer?
• If! have chemorherapy, how will it be given? For how long and for how
many cycles?
• Will rhe drugs make me sick?
• Will rhe drugs make my hair fall out?
• What are rhe orher side effects?
• How can I deal with the side effecrs?

96
• How long will I take to recover from side effects?
• Are the side effects permanent or temporary?
• Who will I contact if I have side effects or other problems?
• Is there a phone number I can call if I develop serious side effects or
other problems during the night or on weekends?
• Will chemotherapy make me go through menopause permanently?
• How will chemotherapy affect my fertility?
• Will I still be able to have children?
• Will I still be able to work?
• When will I have chemotherapy if I am also having radiotherapy?
• When will I have chemotherapy if I am also having hormonal therapy?
• If I am having a breast reconstruction, will chemotherapy affect when I
can have the reconstruction?
• If I have alternative or complementary therapies, how will they affect
the chemotherapy?
• How much will the chemotherapy COSt?
• What sort of food should I eat while I have chemotherapy?

97
 External breast
prostheses

This chapter is for women who are having a mastectomy, to help make
decisions about breast prostheses. The chapter contains information about:
• what external breast prostheses are
• the advantages and disadvantages of a breast prosthesis
• what's involved in choosing a breast prosthesis
• the cost of breast prostheses
• where you can get a breast prosthesis.

What is an external breast

prosthesis?
After mastectomy a false breast, called an external breast prosthesis or
breast form, can be worn inside your bra to give shape to your clothe. It's
designed to match the skin tone, size and shape of your other breast.

A breast pro thesis is specially weighted so that it feels and moves like your
other breast, re tores your balance and helps prevent any posture problems.

When you're wearing most clothes, other people won't be able to tell that
you're wearing a prosthesis. If you like to swim, you can get a special
swimming costume and special breast prosthesis so that your prosthe is
isn't noticeable.

98
Advantages and disadvantages of a
breast prosthesis

What are the advantages of wearing a

breast prosthesis?
The advantages of wearing a breast prosthesis (over not wearing one) include:
• when wearing most clothes, your breasts can look similar to the way
they looked before your surgery - other people will not be able to tell
that you have had a mastectomy
• you're likely to feel better about the way you look in clothes
• a prosthesis can help you to feel more confident about yourself
• your posture and balance are likely to be more evenly weighted,
particularly if your other breast is large
• you're less likely to develop back and neck problems.

What are the disadvantages of wearing a

breast prosthesis?
The disadvantages of wearing a breast prosthesis include:
• some clothing cannot easily be worn with a breast prosthe is (for
example, some evening dresses)
• some prostheses can feel uncomfortable in hot weather, when sweat
between your skin and the prosthesis can cause skin irritation
• a breast prosthesis usually needs to be replaced about every 2 years
• a breast prosthesis can be expensive (see page 102 fOr information about
the cost o/breastprostheses; see pages 167-168 fOr ways to getfinanciaL help).

99
Choosing a breast prosthesis
How do I choose a breast prosthesis?
Choo ing the right prosthesis for you will depend on many facrors, including:
• the type and extent of surgery you have had
• your individual figure
• the shape and size of your other breast - or, ifborh breasts were removed
during surgery, your choice may depend on the shape and size that you'd
like your breasts ro be; some women choose not ro wear any prostheses
in this situation
• how comfortable you find different prostheses
• the cost of different prostheses
• your preference.

It's imponant that you are fitted correccly for a breast prosthesis. To find out
where you can get a properly fitted prosthesis, contact the Cancer Helpline
on 13 11 20.

What are the different types of

breast prosthesis?
There are three main types of brea t prosthesis:

• Temporary prosthesis
For the hrst 6 weeks or so after urgery you might be given a temporary
prosthesis at the hospital. There is usually no cost ro you for this
prosthesis. It's very soft and light so that it won't hun while you're still
feeling sore. If you'd like a temporary prosthesis but didn't get one at the
hospital, phone the Cancer Helpline on 13 11 20.

100
• Permanent prosthesis
When your mastectomy wound has
healed, yOLl can be properly fitted
tor a prosthesis. This is called an
external or 'permanent' prosthesis,
although yOLl may need to replace it
after a tew years.
Permanent external prostheses come 111 a variety at skin colours and
designs. They are weighted to match your other breast.
Other types at external prosthesis include:

o Special lightweight breast form

A lightweight breast torm is specially designed for swimming in
both salt water and chlorinated water. It can be worn inside a
sWlmm1l1g costume.
Some women with lymphoedema prefer to wear a special
lightweight breast form as their regular prosthesis. See pages
124-126for details oflymphoedema.

o Attachable or self-adhesive breast forms

These breast forms attach directly to the skin on your chest, Llsing a
special kind of glue.

• Partial prosthesis
Partial prostheses, called shapers, bra boosters or shell prostheses, are
available and could be suitable for some women after breast
conserv1l1g surgery.

For up-to-date information about the types of breast prostheses that are
available, phone the Cancer Helpline on 13 11 20.

101
Do I need a new bra?
Many women prefer to wear a bra that has a pocket in it, to hold their breast
prosthesis in place. You can buy special mastectomy bras, or you can sew
pockets into your regular bras. If you have an attachable or self-adhesive
prosthesis, your prosthesis will stay in place without a pocket.

Not all women like to use a bra pocket or a mastectomy bra, but if you'd like
to find out more, ask about them when you are fitted for your prosthesis.

How much does a breast

prosthesis cost?
The cost of your breast prothesis will depend on the type you choose. Some
financial help might be available.

If you're a public patient in a public hospital, you might be able to get

your first prosthesis for free, or for a reduced fee. There are also financial
assistance programmes that might be able to help with the cost of
your prosthesis. See pages 167-168 ftr inftrmation aboutfinanciaL assistance.
Contact the Cancer Helpline on 13 11 20 for information about financial
assIstance programs.

If you have private health insurance, you might be able to get a refund for
some or all of the cost ofyour prosthesis and/or special mastectomy bras and
pockets. To find out more about refunds, talk to an advisor at your health
fund. Note that some health funds refund costs of either a prosthesis or a
breast reconstruction operation. Ask an advisor at your health fund about
this if you think you might want to have a breast reconstruction at a later
stage. See pages 165-166ftr detaiLs ofcosts ftr private patients.

102
Where can I get a breast prosthesis?
It's important to get your prosthesis fitted by a specialist prosthesis fitter.

Prostheses can be bought from some lingerie shops, some department

stores, or your State or Territory Cancer Council. To find out where to get
a prosthesis in your area, and whether you could get any financial help,
you can:
• ask your surgeon or breast care nurse
• phone the Cancer Helpline on 13 11 20.

103
 Breast reconstruction

"I haven't got very big This chapter is for women who are having (or have
boobs and a had) a mastectomy, to help make decisions about
lumpeaomy wasn't an breast reconstruction. The chapter con tal ns
option. My surgeon
information about:
very much leant
towards a masteaomy. • the advantages and disadvantages of breast
Reconstruaion was reconstruction
offered immediately."
• the timing of breast reconstruction
• how to decide whether to have breast reconstruction
• breast reconstruction using implants
• breast reconstruction using back muscle transfer
• breast reconstruction using abdominal muscle transfer (TRAM flap)
• other types of breast reconstruction, using tissue from another part of
the body
• nipple reconstruction
• costs of reconstruction
• questions you may want to ask about breast reconstruction
• where to get more information.

104
Introduction to breast reconstruction
Breast reconstruction involves rebuilding a breast shape, using an
implant or tissue from another part of your body.

Sometimes reconstruction is done immediately after a mastectomy

operation (that is, while you're still in surgery), and sometimes it involves
additional operations later on.

Over the last decade, techniques for breast reconstructIon have greatly
improved and there is now a better understanding of the risks and benefits
of the procedures.

Although breast reconstruction aims to rebuild your breast so that it's as

'lifelike' as possible, your reconstructed breast will not look and feel the
same as before your initial surgery.

The surgeon who performs your mastectomy may also be able to do your
breast reconstruction. Or your surgeon may either work with, or refer you
to, a surgeon who specialises in breast reconstruction.

There is no evidence that breast reconstruction stimulates the breast

cancer or makes it more likely to come back.

There is no evidence that breast reconstruction prevents breast

cancer from being diagnosed if it does come back.

105
Advantages and disadvantages of
breast reconstruction
What are the advantages of breast
reconstruction?
The advantages of having a breast teconstruction include:
• you don't need to wear an external prosthesis
• you may feel less grief about the loss of your breast
• you may experience fewer sexual or self-es[eem problems.

What are the disadvantages of breast

reconstruction?
The disadvantages of having a breast recons[ruction include:
• you will need to have more surgery than if you had mastectomy alone
• you will probably need a longer recovery period after mastectomy and
breas[ reconsuuction, compared with recovery after mas[ectomy only
• you may not like the results of the breast reconstruction - your breast
will not look and feel the way it did before surgery
• you may need another operation if there are any complications with
your breast recot1Suuction - [his isn't common, but does happen for a
small number of women
• if [issue from another part of your body (such as your stomach) is used
to reCOl1struC[ your breast, you will have scars on that part of your body
• you could have other side effec[s - depending on the type of operation
you have, possible side effects include: firmness of the breast mound;
discomfort or pain; infection; me need for the implant to be replaced
later on; or loss of some muscle strength in the arm or stomach (see pages
111-114 for information about possibLe side effects)

106
• if the breast reconstruction is done at the same time as the mastecromy,
a longer operating time could be needed - this could lead ro difficulty
in arranging surgery ro rake place as soon as you wanr.

The timing of breast reconstruction

Breast reconstruction can be planned before your mastecromy. It may be
possible ro do the reconstruction at the same time as your mastecromy, or it
could be done some time later. Note that immediate reconstruction isn't
always possible, because an expert surgeon may not be available ro do the
breast reconstruction at the same time as the mastecromy.

What are the advantages of immediate

breast reconstruction?
The advantages of having an immediate breast reconstruction (compared
with one done at a later stage) include:
• you may feel less grief over the loss of your breast
• you will have fewer operation - this is because the mastecromy and the
hrst breast reconstruction operation are done during the same operation
• your rotal recovery time will be less - this is because you will have fewer
operations ro recover from
• the cosmetic result is likely to be better - the look and feel of your
reconstructed breast is likely to be better after an immediate
reconstruction, compared with a reconstruction done later
• there is likely to be less disruption to your life and work.

107
What are the disadvantages of immediate
breast reconstruction?
The disadvantages of having an immediate breast reconstruction (compared
with one done at a later stage) include:
• your decision about whether to have a breast reconstruction, and if so
which type, may feel hurried
• organising the surgery may be difficult
• the operation is longer than for mastectomy only
• wounds from a breast reconstruction can take longer to heal than
wounds from mastectomy only - if there are problems with the healing
of your wounds, this may delay other treatments, such as chemotherapy.

Deciding about breast reconstruction

How do I decide whether to have

a reconstruction?
If you are considering a breast reconstruction, it's important that you have a
realistic expectation about what is involved and how your breast may look
afterwards. It's recommended that you discuss this with your surgeon and
other women who have had breast reconstruction. See page 155 for
information about the Breast Cancer Support Service and how to find other
women who have had breast reconstruction. You can ask your surgeon to show
you pictures of other women who have had similar breast reconstructions.
You may also like to phone the Cancer Helpline on 13 11 20 for other
resources, such as pamphlets and videos.

108
 Before deciding whether or not to have a breast reconstruction, you
need to weigh up the risks, side effects and benefits of each type of
procedure, and the importance of breast reconstruction to you.

Which type of reconstruction should I choose?

The type of breast reconstruction suitable for you will depend on your
particular situation, body shape, preferences and general health. Some types
of breast reo6nstruction will not be suitable for some women.

Types of breast reconstruction include:

• implants
• back muscle transfer (Latissimus Dorsi flap)
• abdominal muscle transfer (Transverse Rectus Abdominis Muscle flap,
also called TRAM flap)
• other types of breast reconstruction using tissue from another part of
your body.

It's also possible to have a nipple reconstruction if your nipple has been
removed during surgery.

See the relevant sections of this chapter for details, including the advantages
and disadvantages of each of the different types of reconstruction.

Surgery to the other breast

Sometimes women having a breast reconstruction choose to have surgery to
the other breast as well, so that both breasts look the same. This could mean
a procedure to reduce, enlarge or change the shape of the other breast.

109
 How long will I take to recover
from breast reconstruction?
The time it takes ro recover from a breast
reconsrruction is different for each woman, and also
depends on the type of reconstruction. Usually
women can get back ro normal activities within 4-6
weeks after an implant reconstruction. However,
recovery after reconsrruction using abdominal muscle
rransfer or back muscle rransfet can take longer.

Breast reconstruction using implants

Implants are usually made from silicone gel. The technology and safety of
silicone implants has been much improved in recent years. Implants made
from saline are also available, bur the cosmetic result is usually better with
silicone implants. Implants are inserted onto the chest wall, underneath the
chest muscle and skin.

To reconstrucr your breast using an implant, a special empty bag, called a

tissue expander, is inserted underneath the muscles on your chest wall. This
involves a short operation. Over the next few weeks or months, saline is
regularly injected (about once a week) through the skin inro a valve in the
bag, until the bag has been expanded ro the appropriate size. By gradually
increasing the size of the bag over time, the muscle and skin can srretch
slowly to the appropriate breast size.

When the expander bag has reached the appropriate size, a second operation
is then done to replace the expander bag with a more permanent implant.

110
What are the advantages of breast
reconstruction using an implant?
The advantages of having a breast teconstruction using an implant (over
other rypes of reconstruction) include:
• it's a relatively simple procedure
• hospital stays and recovery periods are relatively short
• surgery and scarring are located only in and around the breast area,
which is not rhe case with other rypes of breast reconstruction.

What are the disadvantages of breast

reconstruction using an implant?
The disadvantages of having a breast reconstruction using an implant (over
orher rypes of reconstruction) include:
• the breast may not be as 'lifelike' or natural as other rypes of
breast reconstruction
• in some cases, a capsule of rhick scar tissue forms around the implant -
this can make the breast feel firm and uncomfortable
• rhe implant may have to be replaced at a later time
• you may get an infection and rhe implant may need to be removed
• if you have radiotherapy after having an implant, rhere is a risk rhat rhe
tissue around rhe implant could become harder.

Breast reconstruction using back

muscle transfer
Breast reconstruction using back muscle transfer (Latissimus Dorsi flap)
involves moving a flap of muscle, fat and skin from your back to your chest,
to form a new breast 'mound'. There are different techniques for moving the
'flap' from your back to your chest. Ask your doctor about the advantages
and disadvantages of rhe different techniques.

III
Usually a saline implant is placed behind the new breast 'mound', to increase
the size of your reconstructed brea t and match the size of your other breast.
The implant is covered by the flap of muscle, fat and skin, and therefore looks
and feel more natural than an implant-only reconsuuction. The operation is
much longer than the operation for reconstruction using an implant only.

What are the advantages of breast

reconstruction using back muscle transfer?
The advantages of having a breast reconstruction using back muscle transfer
(over other types of reconstruction) include:
• it produces a more natural breast 'mound' than the implant
r construction
• rhe breast 'mound' will change in size according to any weight gain or
weight loss.

What are the disadvantages of breast

reconstruction using back muscle transfer?
The disadvantages of having a breast reconstruction using back muscle
transfer (over other types of reconstruction) include:
• you will have a scar on your back
• you could have a slight los of arm strength, possibly affecting overhead
reaching movements, such as swimming or hanging out the washing
• there is a small risk that the tissue that is moved to your breast may not
'take' (meaning that the tissue may die) if the blood supply isn't
adequate - if this happens, another operation will be needed
• longer hospital and recovery periods (than with implant breast
reconstruction) will be needed
• the operation may not be possible for you if you do not have enough
tissue on your back.

1/2
Breast reconstruction using abdominal
muscle transfer (TRAM flap)
Breast reconstruction using abdominal muscle transfer "My breast is really,
usually involves moving a flap of muscle, fat and skin really good, but my
from the abdomen (stomach) to the chest, to form a tummy hasn't been the
same since. It depends
new breast 'mound'. This is called a Transverse Recrus how you weigh things
Abdominis Muscle flap, or TRAM flap. up I guess. I'm really
happy with the
There are different techniques for moving the 'flap' breast"
from your stomach to your chest. Ask your doctor
about the advantages and disadvantages of the different techniques.

What are the advantages of breast

reconstruction using abdominal muscle transfer?
The advantages of having a breast reconstruction using abdominal muscle
transfer (over other types of reconstruction) include:
• it produces the most natural breast 'mound'
• the breast 'mound' will change in size according ro any weight gain or
weight loss.

As this breast reconstruction technique involves having a 'tummy ruck',

some women consider this an advantage.

What are the disadvantages of breast

reconstruction using abdominal muscle transfer?
The disadvantages of having a breast reconstruction using abdominal
muscle transfer (over other types of reconstruction) include:
• you will have a scar across your stomach

113
• you may have a slight loss of strength in the muscles in your stomach
• you may be at risk of developing a hernia - if the wall of muscles on
your tomach become weak, some tissue (from underneath the muscles)
can poke through the wall where the muscles are weak, forming a lump
berween the muscle wall and the skin on your stomach
• there is a small risk that the tissue that is moved to your breast may not
'take' (meaning that the tissue may die) if the blood upply isn't
adequate - if this happens, another operation will be needed
• longer hospital and recovery periods (than with implant breast
reconstruction) will be needed
• you won't be able to drive or lift objects for several weeks after
the surgery
• the operation may not be possible for you, if you don't have enough
tissue on your stomach.

Other types of reconstruction using

tissue from another part of the body
There are many different types of breast reconstruction that use tissue from
another part of your body to form a new breast 'mound'.

The type of reconstruction that is suitable for you will depend on your
particular situation, body shape, preferences and general health. Ask your
doctor which techniques would be most suitable for you, and what the
advantages and disadvantages are of these techniques.

In general, the advantages and disadvantages of using tissue from another

part of your body to build a breast 'mound' are similar to those listed for the
TRAM flap and the back muscle transfer reconstructions. The main
advantage is that the breast 'mound' looks and feels more natural than a
'mound' made using an implant. The main disadvantages are that problems

114
can develop in the area from which the tissue was taken, and that tissue may
die after being used to build the breast mound if the blood supply is
not adequate.

Some breast reconstruction techniques using flaps of tissue are listed below.

• Reconstruction using a DIEP Flap (Deep Inferior Epigastric

Perforator Flap)
The DIEP flap technique uses tissue from the abdomen (stomach) to
form a new breast 'mound'. The DIEP flap is different from the TRAM
flap (see pages 113-114) because it uses mainly slcin and fat from the
stomach and avoids using stomach muscle.

• Buttock transfer (free gluteal flap)

The buttock transfer involves moving tissue from the buttocks to the
chest to form a new breast 'mound'. It also involves moving a vein from
your leg to the chest to supply blood to the new breast 'mound'. An
advantage of this technique is that the scar on the buttock is usually well
hidden. However, a scar in this location can be uncomfortable.

• Breast sharing reconstruction

A breast sharing reconstruction involves using some breast tissue from
your other breast to reconstruct a new breast 'mound'. This produces
the most natural breast 'mound', but is not usually suitable for women
with small breasts.

Nipple reconstruction
If your nipple has been removed during surgery, it is possible for it to be
reconstructed. This can be done using the skin on your breast, or tissue from
another part of your body. For example, some skin from your groin or the
nipple on your other breast can be used to construct a nipple. Your
reconsrructed nipple will not have any feeling.

115
The area around your nipple can be coloured to match this area (called the
areola) on your other breast. Tattooing is used ro do this.

If you don't have a nipple reconstruction you may like to use a nipple
prosrhesis. ipple prostheses come in different shapes, sizes and colours,
and attach directly to your reconstructed breast using a skin-friendly glue.
They can be attached and removed fairly easily.

How much does breast

reconstruction cost?
The financial cost to you of your breast reconstruction will depend on many
things, including:
• the rype of reconstruction you have
• whether you're a private or a public patient
• the fees charged by your surgeon and other health care professionals
involved in your surgery.

If you have private health insurance, ask an advisor at your insurance

company whether some or all of the costs will be covered by your
insurance policy.

Talk to your surgeon abour the costs involved, and how much you will
have to pay. See pages 118-119 fOr questions you may wish to ask about
the cost ofbreast reconstruction.

116
Questions you may want to ask about
breast reconstruction
Listed below are some questions that can provide a guide or starting point
for deciding whether or not ro have breast reconstruction.

Breast reconstruction: possibilities

and outcomes
• Is breast reconstruction possible for me?
• Which types of breast reconstruction are suitable for me? Why?
• What will I look like after the reconstruction?
• Where will the scars be?
• Will I have any feeling in the reconstructed breast?
• Can you show me phorographs of breasts you have reconstructed?
• Can you construct a nipple? How would you do this?

The operation itself

• What is involved in the breast reconstruction operation?
• How many operations will be needed ro reconstruct my breast?
• Will you have to operate on my other breast?
• Who will do the operation?
• How long will the operation take?
• What side effects can I expect?
• Are there likely ro be any complications or problems during or
after surgery?
• Who should I contact if side effects happen?
• How long will I have ro stay in hospital?

117
 • How long will it take me to recover?
• How soon after the operation will I be able to

drive?
• How soon after the operation will I be able to lift
heavy objects?
• Do you specialise in breast reconstruction? How
many breast reconstructions have you performed
this year?

The timing of breast reconstruction

• If I choose to have a breast reconstruction, what is the best time for it -
straight away (during the same operation as the mastectomy) or later?
Why?
• If I decide to have a breast recon truction after mastectomy, how long
will I have to wait?
• If I am a public patient, IS there a long waltlng list to have a
breast reconstruction?
• If I decide not to have a breast reconstruction now, can I change my
mind in a few years' time, and have it done then?
• If I decide to have a breast reconstruction straight away, how will it
affect my radiotherapy treatment?
• If I decide to have a breast reconstruction straight away, how will It
affect my chemotherapy trearment?
• If I decide to have a breast reconstruction later and I am also having
radiotherapy, how long will I need to wait after finishing radiotherapy?

The cost of breast reconstruction

• How much will breast reconstruction cost?
• Is some or all of the cost covered by Medicare?

118
• Is some or all of rhe cost covered by my private health insurance?
• Will I have to pay for any costs 'up from', even ifI can get money back
later (from Medicare or from my private health fund)?

For more information about breast reconstruction call the Cancer HelpHne
on 13 11 20.

119
 Clinical trials

During the course of your trearment, you may be asked whether you would
like to take part in a clinical trial. This chapter contains information about
clinical trials, including:
• whar a clinical trial is
• why there are clinical trials
• rhe advantages and disadvantages of raking parr in a clinical trial
• how to decide whether or nor to rake parr in a clinical rrial
• quesrions you may want to ask abour clinical trials.

What is a clinical trial?

Clinical trials are studies carried our to help find bener ways to prevent,
diagnose, or trear diseases. Many clinical trials about breasr cancer
are international.

Why are there clinical trials?

Clinical trials with cancer parients try to find out whether promising new
approaches to cancer prevention, diagnosis and treatmenr are safe
and effecrive.

120
Major advances made in breast cancer treatments were first tested In

carefully conducted clinical trials.

Each clinical trial must be approved by an ethics committee set up by the

participating hospital and health service. The ethics committee makes sure
that the righrs of the patients involved are protected.

In a clinical trial, there are usually two groups of patients: those who receive
the newer treatment (the intervention group) and those who don't (the
control group). Women in the control group receive standard treatment,
which is the currently recommended treatment. Two groups of patients
are needed, to see whether the newer treatment is better than the
standard treatment.

If you take part in a clinical trial, you will not be able to choose whether
you're in the intervention group or the control group.

What are the advantages and

disadvantages of taking part in a
clinical trial?
The advantage of taking part in a clinical trial is that you may receive newer
treatments that are not yet available to the general public, and that may be
more effective than the treatments currently recommended. You and the
progress of your treatment will be monitored closely. By participating in a
clinical trial you will also be helping other women who are diagnosed with
breast cancer in the future.

The disadvantage of participating In a clinical trial is that the newer

treatments might not be more effective than standard treatments, and might
have more side effects.

121
If you're in the control group, you will not receive the newer treatment
during your participation in the trial.

How do I decide whether to take part

in a clinical trial?
To enter into a clinical trial, you must meet the particular criteria set by the
trial. For example, some trials may be for women of a certain age, or for
women who have had certain treatments in the past. If you do fit the
criteria, your doctors may invite you to take part in the trial.

If you're invited to enter a clinical trial you need to weigh up the risks and
benefits of this decision.

You don't have to participate in a clinical trial if you don't want to.

If you decide to take part in a clinical trial, you will be asked to sign a
consent form. Note that you can withdraw from the trial at any time.

If you decide not to participate in a clinical trial, or if you withdraw from

one, you will receive the standard treatments and care available. The quality
of your care and treatment will not be compromised. The consent form
you sign ensures this.

If you're interested, ask your doctors about any clinical trials that
are suitable for you.

For more information about clinical trials:

• call the NHMRC Clinical Trials Centre (02) 9562 5000
• email enquiry@ctc.usyd.edu.au
• visit the National Breast Cancer Centre website at www.nbcc.org.au
• call the Cancer Helpline on 13 11 20.

122
Questions you may want to ask about
clinical trials
Here are some questions you may like to ask your doctors about
cli nical trials.
• What is the purpose of the trial?
• What treatments or tests does the trial involve?
• What treatments or tests will I have if I am not involved in a trial?
• What are the advantages and disadvantages of participating in the trial?
• What are the possible side effects of treatments or tests that I may have
ifI do participate in the trial?
• What are the possible side effects of treatments or tests that I may have
if I do not participate in the trial?
• What long-term follow-up is part of the trial?
• Have the treatments been used before to treat other rypes of breast
cancer (such as advanced breast cancer)?
• Have the treatments been u ed before to treat other cancer?
• Can I leave the trial at any time?
• Are there any costs involved if I participate in the trial?

123
 Lymphoedema

Lymphoedema is a side effect that some women develop after surgery and/or
radiotherapy to the armpit.

This chapter contains information about:

• what lymphoedema is
• how lymphoedema can be managed.

What is lymphoedema?
Lymphoedema is a swelling in an area of the body due to blockage of the
lymphatic vessels. The swelling can be very mild or quite severe. See page 45
fir infirmation about lymphatic vessels.

Lymphoedema can develop months, or even years, after:

• surgery to remove lymph nodes from the armpit (see pages 45-50 fir
details ofsurgery to remove lymph nodes)
• radiotherapy to the armpit (see pages 58-60 fir details of side effects
ofradiotherapy).

After these treatments to the armpit, lymphoedema can develop in:

• the arm (on the same side as the treated armpit), and/or
• the breast (after breast conserving surgery), or remaining breast tissue
(left on the chest after mastectomy).

124
Lymphoedema usually develops gradually and can appear a long time after
treatment to the armpit. It is different from swelling in the breast, armpit
and arm areas that can happen just after surgery. See page 36 andpage 42 for
descriptions ofnormal sweLLing after surgery.

The number of Australian women who have lymphoedema after removal of

the lymph nodes and/or radiotherapy to the armpit is uncertain. Evidence
from ovetseas suggests that 10-20% of women develop lymphoedema after
surgery to remove lymph nodes from the armpit. After removal of the lymph
nodes from the armpit and radiotherapy to the armpit, about 20-40% of
women develop lymphoedema.

I Tell your doctors promptly about any swelling, tightness or pain

in the arm or breast that develops after treatment, so that it can
I be man_a_g_e_d_o ---'

How can lymphoedema be managed?

If lymphoedema develops, it cannot be cured. However, there are some
things you can do to help manage it, such as reducing the swelling, and
avoiding infection in the arm (which could make the lymphoedema worse).

There is limited evidence about the best way to manage lymphoedema, bur
you might find the following information helpful if you have lymphoedema,
or if you are at tisk of developing it.

Infection in the arm may be prevented by:

• looking after your skin, including:
o keeping the skin moist
o avoiding sunburn to the arm

125
 o avoiding cuts, burns and insect
bites
o wearing gloves when gardening
or washing dishes
• avoiding blood pressure being
taken, or an injection being given,
in the neated arm (the arm on
the same side of the body as the
treated armpit)
• looking after any cuts or insect bites rhat you get, by:
o cleaning the area with warm water and an antiseptic solution
o covering the cut or bite with an antibacterial cream and a clean, dry
bandage or plaster
o watching for any signs of infection such as: red marks on your skin;
swelling; rashes; and increased warmth around the cut.
----.
If you develop an infection in the arm with lymphoedema, seek
medical attention immediately to obtain antibiotics.

Swelling in the arm may be reduced by:

• wearing professionally fitted elastic garments
• massage by a nained lymphoedema drainage therapist, who may be a
physiotherapist, nurse or occupational therapist.

l Lymphoedema i, o,"ally painl"", hut dtug< can he u«d fo, ,e1ief if

you feel any pain.
-----------------------'
Talk with your docrors about any concerns you have about lymphoedema.
For more information about lymphoedema, or local lymphoedema suPPOrt
organisations, call the Cancer Helpline on 13 11 20.

126
 Will treatment affect my
fertility?

If you're a younger woman, you may be pregnant when you are diagnosed
with breast cancer, or you might be planning to have children in the future.

This chaptet contains information about fertility, including:

• treatment during pregnancy
• pregnancy during treatment
• pregnancy after treatment
• menopausal symptoms.

Treatment during pregnancy

Is it safe to have treatment during pregnancy?

r-::::-- -
Some treatments are not recommended if you are pregnant when
diagnosed with early breast cancer.
l-----

If you're already pregnant at the time of your diagnosis, yOLl can have breast
surgery with only a slight risk of miscarriage. The risk of miscarriage is lower
after the first trimester, so some women wait until the second trimester to
have surgery. Discuss the timing of your breast surgery with your doctor.

127
 Radiotherapy is not recommended during pregnancy
because it may cause harm to the foetus (unborn
baby). However, radiotherapy can be given after the
baby is delivered.

Chemotherapy is not recommended during the hrst

trimesrer because it may harm the foetus during this
time. However, chemotherapy is sometimes given
during the second and third trimesters, as then there
is only a small risk of harm to the foetus.

Pregnancy during treatment

Is it safe to become pregnant during treatment?

It is recommended that women do not become pregnant during

treatment for breast cancer.

Some treatments for breast cancer may cause your menstrual period to
stop or become irregular. These treatments include anti-estrogen drugs, such
as tamoxifen, and some chemotherapy drugs. See pages 129-132: WilL
treatment affect my ability to become pregnant? However, these drug are not
reliable as contraceptives.

Falling pregnant while you're having treatment is not recommended. The

foetus can be harmed by treatments such as chemotherapy and radiotherapy.
It is recommended that you use contraception if it's possible that you could
become pregnant during treatment. See page 130 fir infirmation about the
types ofcontraception to use during and after treatment.

128
Pregnancy after treatment

Is it safe to become pregnant after treatment?

There is no evidence to suggest that pregnancy after "One of the reasons
treatment for breast cancer is unsafe for you or for any holding me back
children you may have in the fmure. from chemo was that
I wanted to be able
There is no evidence that pregnancy after treatment to have children in
the future."
for breast cancer will make the breast cancer more
likely to come back.

Can I breastfeed after radiotherapy to

the breast?
Most women who have had radiotherapy following breast conserving
surgery find they are permanently unable to breastfeed from the treated
breast. Usually the treated breast does not produce milk.

However, a few women find that they are able to breastfeed from their
treated breast. There is no evidence to suggest that breastfeeding from the
treated breast wiJI be unsafe for you or your baby.

You can safely breastfeed from your untreated breast if you have
had radiotherapy.

Will treatment affect my ability to

become pregnant?

If you have not yet reached menopause, treatments such ~

hormonal therapies and chemotherapy may affect your ability to
r become pregnant after treatment. ~

129
Treatments for early breast cancer may affect your ability to become
pregnant. Some treatments have this effect during the treatment period
only, while others have a permanent effect.

Temporary infertility
Treatments that may affect your fertility only during the period of treatment
and shortly afterwards include:
• anti-estrogen drugs, such as tamoxifen (see pages 69 and 72)
• some chemotherapy drugs (see page 90)
• certain drugs that affect the ovaries (see pages 70 and 74).

During treatment, your menstrual periods may become irregular or stop.

If this happens, you may be experiencing a temporary menopause, and
you could be infertile. You could also experience other temporary
menopausal symptoms. See pages 132-134 for details of menopausal
symptoms and their management.

Tell your doctor if you are experiencing any menopausal symptoms,

so that they can be managed.

While temporary menopausal symptoms (such as irregular or no periods)

usually mean that you are temporarily infertile, this is not always the case. If
you are sexually active, it is possible that you could become pregnant. There
is no evidence about whether or not it's safe to take the oral contraceptive
pill ('the pill') during or after treatment for breast cancer. For this reason it's
recommended that you use non-hormonal forms of contraception, such
as condoms or a diaphragm.

If your menopause is temporary, the menopausal symptoms will stop after

you finish treatment. Your periods should start again within 12 months of
treatment. Talk to your doctor if you're concerned about menopausal
symptoms or the effect of treatment on your fertility.

130
Permanent infertility
Unfortunately, some treatments for breast cancer will affect your fertility
permanently. The closer you are to the age of natural menopause, the more
likely it is that the menopause (including infertility) will be permanent.

Treatments that may cause permanent infertility include:

• ovatian treatments - these include removal of the ovaries by surgery, and
radiotherapy to the ovaries (see pages 70 and 74)
• some chemotherapy drugs - not all chemotherapy drugs cause
permanent infertility, but the closer you are to the age of menopause,
the more likely it is that chemotherapy drugs will cause permanent
infertility (see page 90).

If you have not yet reached menopause, discuss the risk of infertility
with your doctor before you start any treatment.

If your fertility is affected permanently, this means that you will be unable
to have children naturally after treatment.

If you are permanently infertile, you might be able to have a child or

children using in vitro fertilisation (IVF). Embryos can be produced from
your own ova (eggs) and your partner's sperm before you start treatment for
breast cancer, and then frozen. Nternatively, another woman's ova can be
used (if yOll are no longer fertile). When you have finished treatment for
breast cancer and wish to try to fall pregnant, the embtyos are implanted
into your uterus (womb). ote that IVF, especially when using frozen
embryos, is not always successful. Ask for a referral to a fertility expert
before yOll start treatment for breast cancer, to find out whether this could
be suitable for you.

Infertility can be very hard to come to terms with, especially if you were
planning to have children in the future. The sense ofloss can be hard to cope

131
with. Talk with your doctor about your feelings and concerns. You may also
find it helpful to talk with other women in a similar situation, a fertility
expert or gynaecologist, counsellor, psychologist or psychiatrist. Ask your
doctor for a referral, or phone the Cancer Helpline on 13 11 20.

If treatment affects your fertility permanently, you may al 0 experience

other menopausal symptoms. ee below fOr details ofmenopausal symptoms
and their management.

Menopausal symptoms
Menopausal symptoms are a common side effect of hormonal therapies and
some chemotherapy drugs.

Sometimes the menopause is temporary and sometimes it's permanent. The

closer you are to the age of natural menopause, the more likely it is that
the menopause will be permanen t. See page 130 fOr infOrmation
about temporary inftrtility; see pages 131-132 fOr infOrmation about
permanent inftrtility.

Symptoms of menopause
Whtther your menopause is temporary or permanent, you may experience
ome or all of the following symptoms:
• hot flushe - some medications have been found to be helpful in
managing hot flushes (see page 133 and talk to your doctor fOr more
infOrmation about managing hot flushes)
• sleep disturbance
• vaginal dryness and/or discharge (see pages 150-151 fOr suggestions fOr
dealing with this)
• a decrease in libido (see pages 150-151 fOr suggestions fOr dealing with this)
• no menstrual periods, or irregular menstrual periods.

132
Some women have menopausal symptoms for only a few months, while
orher women have them for much longer.

If your menopause is permanent, you are also at risk of developing

osteoporosis (frail bones). Ask your doctor for advice about preventing
osteoporosis. Your doctor can also monitor you for osteoporosis, and treat
you if it develops.

Managing menopausal symptoms

[Tell you' doew ;f you're exper;eudug any menopau,a! 'ymptom" ]

so that they can be managed.

A range of medical treatments, lifestyle changes and complementary and

alternative therapies are used by women to manage their menopausal
symptoms. For example, see pages 150-151 fir ways to manage the impact
on sexuality.

Different medications can also be used to help manage menopausal

symptoms. Hormone Replacement Therapy (HRT) is a well-known
medication, and is discussed below. Non-hormonal medications are also
available, and can be effective. If you'd like to find our more, ask your
doctor about the benefits and risks of non-hormonal treatments for you.

Hormone Replacement Therapy (HRT)

Some women's menopausal symptoms are severe and not easily controlled.
HRT can be used to relieve the symptoms of menopause. HRT can also
lower the risk of fractures from osteoporosis after menopause.

There is evidence that long-term use of combined HRT (especially when

taken for 5 years or longer) increases a woman's risk of developing breast
cancer for the first time.

133
For women who have already been diagnosed with breast cancer, the risks
from taking HRT are not known. Nor is it known whether taking HRT
increases the risk of breast cancer coming back or spreading to other parts
of the body.

I After a diagnosis of early breast cancer, it is usually recommended

l that you do not take HRT unless you have severe menopausal
symptoms that cannot be controlled by other treatments.

Discuss the options for managing menopausal symptoms with your doctor.
You need to weigh up the benefits and risks of the different options for your
situation.

134
 Will my daughter develop
breast cancer?

This chapter contallls information about daughters and their risk of

breast cancer:
• factors that increase your daughter's risk of developing breast cancer
• where to get more information.

What increases my daughter's risk of

breast cancer?
A diagnosis of breast cancer does not mean your daughter will also
develop breast cancer.

Your daughter may have an increased risk of being diagnosed with breast
cancer if one or more of the following apply to you:
• your breast cancer was diagnosed before the age of 50 years
• your mother and/or sisterls have also been diagnosed with brea t cancer
• you, or someone in your family, has been found to have inherited a
fault in a gene associated with breast cancer, such as the BRCAl or
BRCA2 genes.

Talk with your doctor about any concerns you may have. You may also like
to get more information about the risk of cancer in your family.

135
"My children, especially If you have a son, he may worry about his risk of
my fourteen-year-old developing breast cancer or other cancers. It is
daughter, asked heaps extremely rare for a man to develop breast cancer, and
of questions: 'Will I get
it? How will Mum
your son's risk of developing breast cancer will not be
change? Is she going increased just because you have been diagnosed with
to look OK?'- breast cancer. Also, your diagnosis will not affect your
questions that were son's risk of developing any other types of cancer.
important to her."

Where to get more information

• Read Do you have breast cancer in your family?, a National Breast Cancer
Centre information sheet and questionnaire, in Appendix 2 of this
book. Use it to find our more about your daughter's risk of developing
breast cancer.
• You can ask your doctor to refer you to a specialist family cancer clinic
. .
or genetics servIce.
• A list of specialist family cancer clinics or genetic services for breast
cancer is available on the National Breast Cancer Centre website at
http://www.nbcc.org.au
• Call the Cancer He1pline on 13 11 20.

136
 Follow-up after treatment

This chapter contains information about follow-up, including:

• why follow-up is important
• what is involved in follow-up appointments
• ongoing treatment and care.

Why is follow-up important?

Regular follow-up is essential after treatment for early breast cancer.
Women diagno ed with early breast cancer have an increased risk of the
cancer coming back in the breast or brea t tissue (left on the chest after
mastectomy), or of developing breast cancer in the opposite breast.

After your treatment for breast cancer you should be regularly followed up
by your GP, surgeon, radiation oncologist or medical oncologist. Regular
follow-up makes sure that if breast cancer comes back in the breast, breast
tissue, or the other breast, it is promptly treated.

I If you change doeto" at any t;mc, ",k YOUt new doctot to «que"
your medical records from your previous doctor.
j
Regular follow-up also allows your doctor to check for, and manage,
any side effects from treatment that might develop after you have
fin ished treatmen t.

137
 "I don't want to spend During follow-up appointments, you can talk with
my life frightened that your doctors about how you're coping and feeling after
the breast cancer your diagnosis and treatment for early breast cancer.
might come back. It
There are many different things your doctors can do
probably will never
come back." or suggest to help you cope better. See pages 142-159
- - - - - - -.. fOr a discussion offeelings and suggestions fOr coping with
them. Some women find it reassuring to have regular check-ups, while other
women feel very anxious around the time of their follow-up appointments.
Both reactions are normal. Talk to your doctots if you feel very anxious, as
help is available.

Follow-up appointments

What do follow-up appointments involve?

Appropriate follow-up after a diagnosis of early breast cancer

involves regular physical examinations and mamrnograms.

Physical examinations

A physical examination of the breast/chest where the cancer was and of your
opposite breast will be done by your doctor.

• For 1-2 years after treatment:

A physical examination is recommended once every 3 months.

• For 2-5 years after treatment:

A physical examination is recommended once every 6 months.

• For more than 5 years after treatment:

A physical examination is recommended once a year.

138
These are the current recommendations. Depending
on your situation and your doctor, your physical
examinations could be more or less often.

Mammograms and/or ultrasound scans

• If you have had breast conserving surgery:

a mammogram (and/or ultrasound, if
appropriate) on the same side as your surgery is
recommended 6-12 months after treatment. A mammogram for both
sides is then recommended once a year.

• If you have had a mastectomy:

a mammogram (and/or ultrasound) of your opposite breast IS

recommended once a year.

You will usually need to have a mammogram (and/or ultrasound) before

seeing your surgeon or radiation oncologist, so you can discuss the results
with them. Your GP or specialist will give you a referral to have
a mammogram.

What is not involved in follow-up appointments?

For a small proportion of women who have been treated for early breast
cancer, breast cancer cells are found at a later stage in other parts of the body.
Cancer from the breast that has spread outside the breast and armpit area is
called metastatic breast cancer. See page 3 fOr infOrmation about metastatic
breast cancer.

139
You might assume that you should undergo tegular X-rays, scans Ot blood
tests after your initial treatment, to check whether cancer from the breast has
spread to other parts of the body. However, there is evidence that:

When there are no symptoms or problems, more tests do not

improve the length or quality of life for women who have been
treated for breast cancer.

It is recommended that tests are done only if a woman has symptoms which
suggest that cancer cells may have spread outside the breast and armpit area.

Appropriate follow-up does not involve chest X-rays, bone scans or

blood tests, unless there is a problem which shows that these tests
are needed.

What happens after follow-up appointments?

If your mammogram or ultrasound results are abnormal or a lump IS
detected during breast examination, you will need to have tests, such as
further mammograms, ultrasounds or a biopsy. See pages 7-8 fOr infOrmation
about mammograms, uLtrasounds and biopsies.

If a change or lump is found, your recommended follow-up plan will

probably change.

After a follow-up appointment your GP should be told by your specialist

(surgeon, radiation oncologist or medical oncologist) about any concerns or
plans for more tests.

140
Ongoing treatment and care
You may need trearment and care in addirion ro me regular follow-up
appointments. In between me appointments you may find a brea r lump,
breasr change, or omer symproms. If rhis happens, do not wait until the
regular appointment. See your GP or specialisr as soon as possible.

See your GP or specialist as soon as possible if you:

• feel a lump in either breast, or in the breast tissue left on your
chest after mastectomy
• have any other symptoms in either breast, such as nipple
discharge
• develop any other symptoms that concern you.

Looking afrer your emorional wellbeing is also a very imporrant parr of your
ongoing care, maybe even years afrer your firsr trearment. Some women feel
anxious or depressed for several years, parricularly abour rhe possibility of
me cancer coming back. If you do feel anxious or depressed, or if you have
any orher concerns, supporr is available.

Talk wim your docrors or orher healm care professionals abour any worries
you may have. If you feel you'd like more supporr, ask ro be referred ro a
specialisr such as a counsellor, psychologisr or psychiatrist. See pages
152-159 for suggested ways to get support.

141
7 Your feelings:
coping and support

The diagnosis and treatment of breast cancer causes

''Talking about it to
changes in your life, and can change how you think
other people really
and feel about things. These changes and their effects
does help immensely."
will not be the same for all women, but it can be
reassuring to know that other women share some of the same feelings
and experiences.

It's not always easy, but over time, most women do cope with the changes
caused by their experience with breast cancer. Over time, most women find
they are able to return to doing the things that are important to them.

This chapter contains information about:

• feelings you might have after being diagnosed with breast cancer
• the impact of your diagnosis and treatment - on your partner, children,
family and friends, and on other aspects of your life, including your
sexuality, work and other activities
• finding support to help you cope with your diagnosis and treatment.

Your feelings
Some of the feelings that you may experience are discussed over the next
pages. These feelings have been reported by women diagnosed with breast
cancer. Most women find that, over time, distressing feelings ease.

142
 Sharing your thoughts and feelings with others, even painful
feelings, can help you cope with your diagnosis.

However you feel, you might find it helpful to talk with one or more of the
following: your specialist; breast care nurse; GP; psychiatrist; psychologist;
counsellor; or other women who have had breast cancer.

Shock
You may think 'This can't be happening to me'. You may have a sense of
disbelief or unreality, or you may not realise what's happening. You may feel
like an outsider, looking at a scene that seems unreal.

Anger
You may think 'Why me?' It's natural at some stage to "Initially you go
feel anger, envy and resentment. Maybe you feel through this 'why did
envious of all the 'healthy' people you see, and resent this happen to me, I'm
a good person'. But I
that you have to cope with this diagnosis. You may be got past that and
angry with your God or angry with your body, which thought 'God doesn't
you might feel has let you down. Maybe you feel angry Pick me, it's just bad
because you have lost some control over a part of your luck'. I thought 'maybe
this is just a test'."
life. Maybe you feel angry with the way a member of . . _
your treatment team has managed your situation. Perhaps you feel angry
about lack of support from a partner, family member or close friend.

Feeling like 'just a number' or 'just a breast'

You may feel that you're being treated as a medical problem rather than a
woman with a medical problem. This could be because of the tests and
treatment you're having, or because your surgeon or oncologist is focused
only on the physical part of your diagnosis.

143
Sometimes doctors will pick up on concerns that you have, without you
telling them. At other times, you may need to bring them up directly with
your doctor. If, after talking with your doeror, you still feel your concerns
are not being recognised, you could think about whether you'd like another
doctor to treat you. See page 26fOr infOrmation aboutgetting a second opinion.

Some women find that bringing a friend or family member to appointments

helps them to feel less like 'just a number' or 'juSt a breast'.

Isolation and loneliness

"/ seemed to be At times you may feel alone or isolated. The intentions
supporting more of others may be good, but sometimes people don't
people than were know how to deal with cancer and the emotions it
supporting me,"
brings up. It could be that you feel people are avoiding
you, or that they're pretending everything is fine while carrying on normally
with their lives. At times you could feel pressure to 'be positive', making it
hard for you to talk about the things that matter to you. Feeling isolated is
a possibility because you're experiencing something that others have not
been through. It can be hard to explain your experience to them.

Information pamphlets for family and friends of people with cancer are
available from the Cancer Helpline on 13 11 20.

Self-blame
Some women diagnosed with breast cancer feel they have somehow caused
their illness, or are being punished for something they've done wrong. You
could find yourself asking 'Where did I go wrong?' or 'What have I done to
deserve this?'. However, getting breast cancer is not within your control.
There is nothing you have done to cause it. Some people believe that stress can
make you get breast cancer however, there is no evidence that this is the case.

144
Search for meaning
A diagno i of cancer often leads people ro ask questions about the meaning
in life, u h as: 'Am I living my life the way I want ro?', 'What is the
m aning of life?', 'Does God exist?'. In the e cases it could be helpful ro
talk ro a coun ellor, psychologist or psychiatrist, or a religious leader
or repre entanv .

Sadness or depression
Feelings of sadness or depression are a common reaction ro experiencing a
loss, such as losing your breast, being ill, or perhaps not being able ro have
more children. Some women feel their body has let rhem down.

Questions about depression:

• Have you lost interest and pleasure in work or other activities?
• Do you often feel a sense of hopelessness?
• Do you often feel guilty?
• Do you often feel a sense of worthlessness?
• Are you often tearful?
• I it harder for you ro laugh and ee the funny side of things?
• Do you often get upset?
• Do you have difficulty sleeping?
• Do you feel less interest in seeing family or friends?
• Do you feel less motivated ro organise activities or be involved in the
regular daily activities?
• Do you feel 'down' a lot?
• Do you feel overwhelmed by your feelings and feel unable ro
control them?

145
• Sometimes when things seem hopeless it can feel roo hard ro keep going
on. Do you ever feel like that?
• Would you say any of rhese feelings are suicidal?

If you answer 'ye' ro some or all of the questions above, you may be
experiencing some depression. Talk ro your docror, nurse, or another health
care professional about how you're feeling.

If you are experiencing sadness or depression that makes you feel

overwhelmed, talk to your doctor, nurse or other health care
professional as soon as possible.

Treatment for depression is available, and can help. See pages

152-153 fOr infOrmation about treatment.

Anxiety or fear
Anxiery or fear is often felt in disrressing situations. You could find yourself
feeling anxious while waiting for test resulrs, anxious about your treatment
and its effect on you and your family, or anxious about the future.

Questions about anxiety:

• Do you frequently have worrying rhoughts?
• Do worrying thoughts interfere with your daily life or relationships?
• Do you often feel tense and find it difficult ro relax?
• Do you often feel irritable or angry?
• Do you have difficulry concentrating?
• Do you find it difficult to make decisions?
• Do you have difficulry sleeping?
• Do you get sudden feelings of panic? Or do you experience panic
attacks, with a feeling of dread, difficulry breathing, or fear of dying?

146
• Have you developed phobias or have any phobias "During chemotherapy
become worse? (Examples of phobias include: I was haVing anxiety
intense fear of needles, intense fear of closed attacks. It seems really
stuPid now, but at the
spaces, and intense fear of social situations).
time they were
• Do you often avoid distressing issues and pretty intense."
si tuations?

If you answer 'yes' to some or all of the questions above, you could be
suffering some anxiety. Talk to your doctor, nurse, or other health care
professional about this.

If you are experiencing anxiety or fear that makes you feel

overwhelmed, talk with your doctor, nurse, or other health care
professional as soon as possible.

Treatment for anxiety is available, and can help. See pages 152-153
for information about treatment.

The impact of your diagnosis

and treatment

The impact on your partner, family and friends

Your breast cancer diagnosis and treatment will affect
"t think it's really
others in your life, such as your partner, your family difficult for the people
and close friends. They may feel worried, powerless or around you, it's
not know what to say. They could have similar frustrating, there is not
really much that
emotions to you, such as shock, sadness, depression,
people can do, except
fear, anxiety and anger. Every person is different and be there."
will have his or her own way of coping with your
breast cancer.

147
 ---,
For coping with your breast cancer and resolving any problems,
good communication between yourself and others is importan~

Sharing your diagnosis and feelings with others can give rhem an
opponuniry (Q express rheir feelings and give you valuable suppon.

"You couldn't go You may like (Q rake your parwer, or a friend or family
through the diagnosis member, with you when you see your doceor or orher
and treatment without members of your rrearmenr ream. This can give you
friends and family."
suppon and also allow rhem (Q ask quesrions.

A diagnosis of breast cancer can show up the strengths and prOblem~

of your relationships with your family, partner or dose friends.
r Talk with your doctor, nurse or other health care professional if you
are having any difficulties in your relationships, or if you feel that
those dose to you are not coping.

Your parwer, family member or close friend mighr like (Q make a separare
appoinrmenr wirh your doceor or orher healrh care professional (Q discuss
any concerns rhey mighr have. You may like (Q see a counsellor, psychologisr
or psychiatrisr eirher wgerher, or separarely.

"My family were good, The arional Breasr Cancer Cenrre has an audio
being older. But my CD for parwers of women wirh early breast
mum, my aunties, they cancer, When the woman you Love has early breast
were really shocked,
cancer. You can order it through rhe websire ar
and said things like 'it
should have been us, hup:/ /www.nbcc.org.au or by phoning rhe
not you'." publicarions freecall number on 1800 624 973.

If you live alone, or you don't have supportive family or friends close by, you
could try seeking suppon from orher places. Suppon can be found in many,
and somerimes unexpecred, places. For example, you mighr find rhar your

148
local community group IS very supportive, or
"My husband wasn't
neighbours and long lost friends 'come out of the at all supportive, he
woodwork' to support you. Support can also come could not handle it."
from your Gp, a breast care nurse, religious
organisations, support groups, or a counsellor, psychologist or psychiatrist.

The impact on your children

Your children are likely to be affected by your diagnosis. Depending on their
age, children may know that something is wrong without you even telling
them. You may want to talk to your children about your situation so they
understand what is going on. Answer their questions as honestly as possible in
words they can understand. What they imagine to be happening is possibly
more upsetting to them than the reality will be, once it's explained.

The effect of your diagnosis on your child may be reflected in your child's
behaviour. If you're concerned about your child's behaviour at school, you
could choose to tell the teacher about your breast cancer, so that he or she
understands the reasons for any changes in behaviour.

Teenagers may feel particularly vulnerable as they try

"My daughter was an
to cope with their own problems, as well as with your immense support to
diagnosis and treatment. They're probably worried me. She understood
about how you're coping and might take on the role of and was able to
listen and take in lots
helping to run the house. Your children may worry
that my husband
about what your diagnosis means for them, and couldn't do."
whether they might also develop cancer at some stage.
See page 135: Will my daughter develop breast cancer?

It's important to ask each child how they're feeling and to recognise their
distress. Letting them know you're concerned and interested about their
feelings will help them cope. If you're worried about your children, you can
ask your doctor to refer them to a counsellor, psychologist or psychiatrist, or
some or all of the family can see a family therapist.

149
The impact on your sexuality
Breast surgery, radiotherapy, hormonal therapy and chemotherapy often
have a signiflcant effect on how women feel about themselves and their
attractiveness. This can happen to any woman, whethet or not she has a
partner.

The changes to your body, how much energy you have, and your mood will
affect how you feel about yourself. This includes your sexual desire and
ability to be sexual with others.

The sexual difficulties that are possible as a result of treatment include:

• feeling less attractive because of breast surgery and radiotherapy
• breast tenderness after breast surgery and radiotherapy
• lower libido, due to feeling unwell, tired or worried, or from
chemotherapy treatment
• vaginal dryness, due to hormonal therapies (such as tamoxifen and
ovarian treatments) and chemotherapy treatment.

The following suggestions might help you deal with sexual difficulties you
may encounter.
(From partner): ''To me • Even if it's difficult, try to communicate with your
it didn't change who partner about each other's fears and needs - ways
she was, the fact that
can be found to adapt to your situation and help
she only had one
breast It didn't change you feel closer to one another.
the waman I loved." •
Use a water-based lubricant for vaginal dryness.
Other vaginal moisturisers and creams, some with
estrogen in them, are also available. Talk to your doctor if you'd like to find
out more about the risks and benefits of vaginal moisturisers and creams.

150
• Ir's very common for women to have sexual "I have suffered a loss
concerns after treatment for breast cancer - if you of libido and have
vaginal dryness. I am
have concerns, try to discuss these with your happily married and
doctor, nurse or other health care professional. there are always
practical ways around
• ome partners have sexual concerns after the
any problem."
woman they love has had treatment for breast
cancer - your partner might like to talk about these concerns with a
doctor, nurse or other health care professional.
• You and/or your partner could ask for advice, either together or
separately, from a trained specialist - specialists include relationship
counsellors, sex therapists, other counsellors, psychologists, or
psychiarrists.
• If your doctor is unable to help you arrange a referral to a specialist, the
Cancer Helpline on 13 11 20 can provide informarion abour specialists.

For lesbian women:

You may feel that a lot of artention is placed on (From partner):

heterosexual couples, and that lesbian sexuality isn't "The sex thing, it
mentioned when the effect of the diagnosis on sexuality comes down to
between the couple,
is di cussed. Some partners feel excluded, or even
there's no real rules."
discriminared against.

It's your choice whether you disclose your sexuality to your treatment team.
However, if you feel comfortable with your treatment team, telling them
could help you feel more supported.

It's important that your needs are met and that you feel comfortable with
your treatment team. You might decide that you'd feel more comfortable
with a different doctor or health care professional. See page 26 fOr
infOrmation about seeking a second opinion.

IS I
You may find that you get a lot of support from your partner, family, friends,
or any social or other groups you're involved in. If you'd like to find out
about support services specifically for lesbian women, contact your local
women's health centre or the Cancer Helpline on 13 11 20.

Returning to work or some regular activity

"/ actually just reSigned

If you were employed, whether paid or voluntary, or
fram my job about ainvolved in a regular activity when you were
month or two before I
diagnosed, you may find it helpful to return to this job
was diagnosed, but I've
or activity shortly after treatment. This could make
gone back to work full
time since." you feel valued and give you the comfort of being
around people you're familiar with. Talk to your
employer or organisation about making your hours more flexible for a
period before, during and after treatment.

You may find it difficult to talk with your colleagues or friends about your
experience of being diagnosed with breast cancer. If you want to, you can
share your experience with just a few close friends or colleagues. Sharing
your feelings could lead to valuable support.

Coping and support

Coping with depression and anxiety

If you're experiencing depression (see pages 145-146) and/or anxiety (see
pages 146-147), you're likely to benefit from professional support. Examples
of some of the treatments available are listed on the next page.

152
• Counselling, support and education "I saw a psychologist
connected with the
Appropriate counselling can help women breast unit She was
who ace experiencing anxiety and good, really nice
and kind and
depression. understanding, and
she suggested
You may find it helpful to discuss your concerns progressive muscle
with a counsellor, Gp, breast care nurse, social relaxation therapy."

worker, psychologist or psychiatrist.

• Muscle relaxation therapy and imagery

Muscle relaxation and imagery can reduce stress in mild anxiety.

Techniques for relaxing the whole body are taught in relaxation,

meditation and yoga classes, and in some support groups. Audio tapes
can help you relax. Ask your GP, breast care nurse or social worker about
classes and/or audio tapes.

• Anti-depressants or anti-anxiety medication

Most people with cancer who ace depressed can benefit from
anti-depressants without significant side effects.

Medication can be extremely valuable to help you get through difficult

times. You will usually only need to take anti-depressants for a short
while, and there is no need to feel 'weak' or 'bad' if you need them to
help you cope with this difficult experience.

Talk to your doctor about any side effects from taking anti-depressant
or anti-anxiery medication.

153
Finding support to cope with your feelings
Every woman is different in how she copes with difficult feelings to do with
breast cancer. Support is possible from a great variety of people and
organisations. Some women express and cope with their feelings through
creative arts, such as writing, painting or dancing. Other women find
support from their partner, family or friends, and (sometimes unexpectedly)
from local community or sports groups, religious groups and other groups
and clubs.

Some women also ask for professional help - from their GP, or other
members of their treatment team, or from counselling specialists, such as
psychiatrists or psychologists.

The important thing to remember is that you don't have to cope alone.
There are many ways to find suppOrt and help for coping with your feelings
about your diagnosis and treatment. Thete's no 'right way' to find support
and help. Different women prefer to find support in different ways, from
different people Ot places.

As well as any support you get from family, friends and other areas of your
life, you can find support from the groups listed below:

"I saw the breast care • Members of your treatment team

nurse who was really
Treatment teams can provide emotional,
good. She was female
and not as daunting as psychological and practical support for women
a doctor. She did the with breast cancer.
emotional support plus
all the factual stuff;
A breast care nurse can reduce psychological
she knew the answers
to all the questions."
distress in women with breast cancer.

You should also feel free to raise concerns with any other member of your
treatment team. If this person isn't able to help, he or she can pur yOll in
touch with someone who can.

154
• The Cancer Helpline
The Cancer Helpline on 13 11 20 can give you information about
cancer and related issues over the phone and in writing. Calls are
confidential and stay anonymous.

• Cancer Support Service in yow State or Territory

Each State and Territory has a cancer support "My GP was very
service called the Breast Cancer Support Service supportive and after I
(BCSS), Cancer Connect, or Cancer Council commenced treatment,
I was given a number I
Connect. This free and confidential service can
could contact, a lady at
put you in contact with someone who has been the Breast Cancer
diagnosed and treated for breast cancer - someone Support Service, she
who has 'been there' and understands. She (or he, would talk to me."
if you are a man with breast cancer) will be a
similar age to you, and will have had similar treatments. The volunteers
who provide support are specially trained for this role.
You can access this service by calling the Cancer Helpline on 13 11 20.

• Support groups

Group support can reduce distress in women with breast cancer.

Some women find support group helpful. Support groups hold regular
meetings for people to talk about their experiences, and to share their
concerns and fears with other women in similar circumstances.

Support groups may be run by health professionals. If run by women

diagnosed with cancer, they are called self-help groups.

Group support can increase self-esteem and reduce anxiety,

depression and anger.

155
"It was good because it
was a younger women's
group. It was useful to
see there are other
women out there who
know what it is like."
To find out about support groups in your area contact:
o the Cancer Helpline on 13 11 20
o your doctor
o your local hospital
o your local community health centre.

• Counselling with a health care professional

Counselling can improve quality of life for women with early

breast cancer.

"I talked to a Some women find counselling helpful. Counselling

counsellor at the can help you clarifY your feelings and cope with them.
hospital. It would have Counselling can also help you deal with other issues
been an hour and I
brought up by your diagnosis and treatment.
just sat, and it just all
came out and it was You may receive some counselling from members of
great because she your treatment team, including your GP, social worker
sat there and
or breast care nurse. If you don't get this support, or
she listened."
feel you'd benefit from further counselling, ask to be
referred to a trained specialist. Relevant specialists include counsellors,
psychologists and psychiatrists.

To find a counselling specialist, go to your local community health

centre, or ask for a referral from your GP, social worker, or other
member of your treatment team. The Cancer Helpline on 13 11 20
can also give advice about how to find a counsellor.

• Breast Cancer Network Australia

Breast Cancer Network Australia (BCNA) is a national network
representing Australians who are personally affected by breast cancer. It
seeks to empower them and improve their care through advocacy, and
the provision of information and targeted support. As an 'umbrella'

156
 organisation, it links and suPPOrt more than 100
"I was very hungry for
breast cancer groups and over 8,000 individuals information and
across the country. contact with other
women who had been
BC A produces a free quarterly magazine called through It. to talk
The Beacon, which includes stOries written by about their feelings
ond thoughts. But
women with breast cancer. B NA also has
there was no support
information brochures, including: Messages of group or anything,
Hope and Inspiration; and Helping a Friend or so I got that set up.
Colleague with Breast Cancer. That was the best
therapy for me."
BCNA has pur together an information package,
called The My journey Kit, for women newly diagnosed with breast
cancer. It contains practical information and suggestions about
treatment, lists resources that women with breast cancer have found
helpful, and includes a personal diary for recording your experiences of
treatment. The My journey Kit is available free of charge to those
diagnosed with breast cancer within the past 12 months by calling
1300785 562.

BC I\s phone numbers are: 1800500258 (tOll-free) or (03) 9805 2500.

Their website address is www.bcna.org.au

Suggestions from women who have been

diagnosed with breast cancer
There are no easy answers when it comes to facing a serious illness. Every
person finds their own way to cope as best as they can. Here are some
suggestions about coping with cancer from other women who have been
diagnosed with breast cancer. You may not find all the suggestions helpful
for you, but they can give you an idea of how other women have coped with
their diagnosis and treatment for early breast cancer.

157
• Maintain hope - remind yourself that there are effective rreatments for
early breast cancer.

• Live in the present as much a possible - the past cannot be undone, and
the future is unknown; many of our fears might not happen.

• Keep focusing on life - live your life as fully as possible and carry out
the activities that give you the most joy and meaning.

• See your illness as a challenge to be overcome.

• Recognise that you have control over how you react to situations, even
if you cannot control what happens to you.

• Use humour as much as possible to lighten your situation.

• Learn to accept your negative feelings, such as anger, sadnes and

re entment - this may help them to pass.

• Keep up a sense of control over the choices you have - be involved in

deci ion about your care, and look for as much information as
you need.

• F cu on relaxing - find a good relaxation tape.

• Keep a journal about your experiences - this will help you under tand
and xpre s your feelings.

• Take r gular 'time out' - do something that you enjoy or find relaxing.

• Take part in breast cancer networks and newsletters - this may help you
feel that, through your experiences, you're helping other women in a
similat situation.

• Depending on your situation, paid employment or volunteer work can

give you and others satisfaction, and help you get back to living your life
as normally as possible.

158
 You should live your life as

" you want to, not as you're

expected to.
Try to keep your sense of
humour. I know it can be
hard at times.
I've become very involved in
breast cancer issues and
things happening around
home and abroad.
I've just had some amazing
experiences since the
breast cancer. All of that
has been a wonderful
healing process.
Surround yourself with
positive things. Sometimes
you have to retrain your
thinking. And don't dwell on
terrible things happening
to you.
Breast cancer has changed
my outlook on life and has
made me a stronger person.
Right, it's happened, it's
gone, I'm here now and life
goes on.
I have a little sticker on my
computer that says 'Count
your blessings, not your
problems'.
Keep a cheerful outlook.
Think of what you've got
left. Yeah well I'm here, I'm
alive. You know you've got
a new chance at life.
I started doing tai chi and
that's become part of my
life. I started walking at
six o'clock in the morning
and that's now also , ,
become part of my life.

159
 Complementary and
alternative therapies

This chapter contains information about:

• what complementary and alternative therapies are
• evidence about the effectiveness of complementary and aJternative
therapies
• questions you may want to ask an alternative health practitioner.

Healthy living - including a good diet, exercise within limits,

enough sleep and relaxation, and effective management of stress - is
important for everybody.

What are complementary and

alternative treatments or therapies?
Complementary and alternative therapies are any treatments or therapies
that are not part of the conventional treatment (such as surgery and
radiotherapy) of a disease.

Complementary and alternative therapies include:

• acupuncture
• relaxation therapy/meditation
• gentle exercise

160
• yoga "I started swimming
• tai chi because I was having
problems with my arm.
• posltlve Imagery That really did help."
• faith/spiritual healing
• laughtet
• musIc
• art "I da yoga, which I
ftnd wonderful".
• massage
• aromatherapy
• dietary therapies
• some support group programs "I was using Chinese
• naturopathy herbs before I was
diagnosed, so I
• immune therapy discussed this with
• homeopathy my oncologist"

• Chinese herbs
• megavl tamlllS.

Most women who use complementary and alternative therapies also use
conventional treatments.

You may find that complementary and alternative therapies are helpful for
you. However, it's important to remember that many of these therapies have
not been tested for side effects, or for their interactions with conventional
treatments. Talk with your doeror about any complementary or alternative
treatments you're taking.

161
What is the evidence about the
effectiveness of complementary and
alternative therapies?
Many complementary and alternative therapies have
"The meditation not been tested in clinical trials, so there is little
sessions at the
evidence about how effective they are.
hospital were
excellent. I'm not
one who is able to There is no evidence that alternative and
meditate really complementary therapies can remove breast
easily, but I found
cancer, prevent it from coming back, or prevent
it very useful."
it from spreading to other parts of the body.

Some alternative therapies and complementary therapies may increase your

wellbeing, although this is yet to be fully re earched.

However, there is evidence about the benefits of some complementary and

alternative treatments, for example:

Muscle relaxation and imagery can:

• reduce distress in women with mild anxiety
• reduce feelings of pain.

See page 153 for information about muscfe relaxation and imagery.

Some complementary and alternative treatments or therapies may

be harmful if taken at the same time as conventional treatments.
Talk with your doctor about any treatments you are taking or
involved in.

162
Questions you may want to ask an
alternative health practitioner
Before you decide on any treatmenr, it's important to be well informed. You
also need to feel confident about the training of any alternative health
practitioner. Possible questions you should ask him or her include:
• What is your training?
• Exactly what is the therapy you are proposing?
• What do you hope it will do?
• What is the evidence for the success of this treatmenr?
• What side effects could there be?
• How common are the side effects?
• Will this therapy affect other treatments I am having?
• How much will this therapy cost?

Most specialists or GPs will be happy to discuss these therapies with you. If
not, you may like to seek a doctor who is happy to do so. For more
information call the Cancer Helpline on 13 11 20.

163
 Financial and practical
support

"/ went through our This chapter comams information about costs
patient assistance that could be involved in your treatment and care,
travel scheme. They and financial or practical help that might be
found me 0 place to
available, including:
stay not for from the
hospital that come • costs of tests and treatments
under their criteria, so
• accommodation and travel while having
they funded the bill."
treatment
• other practical help while having treatment, such as childcare or other
help at home
• where to get information abour financial assistance.

Costs of tests and treatments

It is recommended that you talk about the likely costs of medical tests,
treatment and support services with your doctor. Your costs will depend on:
whether you have treatment in the public or private system; whether you're
working and need to take time off for treatment; and whether you live in a
rural area and need to travel for treatment.

Discussing your financial concerns with a member of your treatment team,

such as a social worker or GP, should help you to find out what you need to
know about financial support.
It may also be helpful to ask your pharmacist and/or local Medicare office
about the 'safety net' on costs of medications and medical bills.

164
Costs for public patients
You're entitled to be treated for your breast cancer as
a public (Medicare) patient in a public hospital. You
will be treated by doctors nominated by the hospital,
and you will not be charged for most treatment and
care costs.

If some of your care isn't paid for, extra financial help

may be available. See pages 166-168. For example,
yOLl might be able to get extra help if you're asked to
pay for some of the cost of YOLlr breast prosthesis. See pages 166-168.

If it's your preference, you can choose to pay for treatment as a private
patient, even if you don't have private health insurance. Talk to your doctors
if you'd like to find our more abour the COSts.

Costs for private patients

If you have private health insurance, you can decide whether you want to be
treated as a public or private patient. Make sure you tell your doctors what
you decide.

It's a good idea to find out how much your trearment will cost you before
you start any treatment as a private patient. Ask your doctor for a
cost-quote, and talk to an advisor from your health fund. You may want to
ask the advisor from your fund about some or all of the following:
• Which treatments are covered by my insurance?
• Which treatments are not covered by my insurance? (for example,
radiotherapy is often not covered by private health insurance)
• Which other services are covered by my insurance? (for example, you
might be able to get a refund for buying a wig or breast prosthesis)

165
• Which other services are not covered by my insurance? (ror example,
some health insurance policies don't cover psychological services)
• Ir I claim ror a particular rreatment or service now, does this mean that
I cannot claim ror other rreatmenrs or services later on? (ror example,
some health runds may pay ror either a breast prosthesis or a breast
reconstruction, but not for both)
• What is the gap between the treatment or service costs and the private
medical insurance rebate? That is, how much or the treatment or service
cost will I need to pay?

Accommodation and travel when

having treatment
If you need to have treatment such as surgery or radiotherapy in a centre or
hospital that is rar rrom where you live:
• accommodation may be available ror you and your family at a reduced ree
• travel costs may be subsidised - that is, yOLl might only have to pay some
of the costs.

To find out about financial help for travel and accommodation costs while
having rreatment, peak to a breast care nur e or hospital social worker, or
contact the Cancer Helpline on 13 11 20.

Other practical help when

having treatment
Depending on your situation and where you live, financial and practical
help may be available for:
• child care
• meals
• general home help.

166
You could also be eligible for a sickness allowance '" had to find
babysitters while I had
while you're having, and recovering from, treatment.
my treatment, or take
To find out about the practical assistance available to my son to the hospital
with me. , didn't know
you when you're having treatment you can: ask the that help might
hospital social worker or breast care nurse; call your be available."
local council; ask at your local community health
centre; or all the Cancer Helpline on 13 11 20.

Where to find out about

financial help
To find our about financial assistance, you should start by asking your
hospital or community social worker, breast care nurse or community
nurse. He or she can help you to claim the benefits that may be available.

You can also contact the Cancer Helpline on 13 11 20 for information

about financial assistance.

Below is a list of place you can contact to see whether you can get some
financial assistance. Most schemes are means-tested, so the assistance you get
may depend on your income and other ass ts.

• Centre1inkJDepartment of Social Security

You may be eligible for a benefit or pension, such as the Sickness
Allowance.

• The Health Department in your State or Territory

There is a patient's travel assistance scheme for women who have to
travel over a certain distance for treatment.

• Department of Veterans Affairs

There are a number of benefits and pensions for veterans or partners
of veterans.

167
• The Cancer Helpline or your treatment hospital
The Cancer Helpline on 13 11 20, or your treatment hospital, can give
you information about:
o accommodation
o travel
o practical assistance, such as home help
o external prostheses
o other grants or subsidies that may be on offer in your State or region.

• Local councils
Some local councils help with practical matters, such as child care, meals
and general home help.

168
Messages from women who have had
breast cancer
Yes it may be a terrible stage
" of your life, but life will go on
once it's all finished. It may not
seem like it, but life will go on
and things will get back to
normal or relatively normal.
If I start to feel tired I'll sort of
think right, just slow down a bit
and take it a bit easier, and if the
garden looks terrible and this
doesn't look right and something
else needs doing I'm learning to
really say, 'No I'm not doing it
today, I'll do it later', or I'll get
someone else to help me do it.
I've been to hell and back again
absolutely, and I never thought
there was going to be a light at
the end of the tunnel. But it's
turned around and I've become
quite well now and I've been
able to do some amazing things.
You can still lead a normal life
while having treatment. You
may feel a bit sick sometimes
but there's nothing to stop you
going out with your friends or
going to the movies.
When I stood for Parliament,
my family was delighted.
They knew it was something
I wanted to do, and I didn't
let breast cancer get in the
way of that.
I've been involved with a group of
women with breast cancer, who
have done three adventures. The
third one, which I took part in,
was a push-bike ride around
Tasmania. It was a wonderful and
amazing experience. There've
been lots of things I've done that
would never have happened if
I had never had breast cancer.
You value your life more after
you've had breast cancer. You
live your life every day and do
not take anything for granted.
I'm normally really shy and
quiet and now I'm changing.
It's really been good for my
personal growth; I don't "
know how you explain it.
169
Appendix I: The internet
"I like to inform In addition to the information you receIve from
myself. I got on the your treatment team, you might find it helpful m
internet and read up get information from different sources. Throughout
about it."
this book, we recommend that you phone the
Cancer Helpline on 13 11 20 for up-m-date, local information that is
relevant for you.

'Surfing' the internet can also be a useful way to find information. However,
keep in mind that the information you find may not always be accurate. Use
careful judgement, and check what type of organisation has put the
information on the internet.

The internet can be accessed using a personal computer at home, or at local

libraries and in 'internet cafes'. If you aren't able m access the internet, you
can ask the Cancer Helpline on 13 11 20 to print out information from
websites and send it to you.

Some Australian websites that you may find helpful include:

The National Breast Cancer Centre: http://www.nbcc.org.au

This website has up-to-date information about breast cancer.

Breast Cancer Network Australia: http://bcna.org.au

This website has personal stories written by women with breast cancer,
and practical suggestions and resources.

The Cancer Council Australia: http://www.cancer.org.au

This has information developed by the Cancer Council Australia,
including information about breast cancer. It also has links m the State
and Terrimry Cancer Councils.

170
Some websites from other countries* that you may find helpful include:

American Cancer Society: http://www.cancer.org

This gives information about cancer, including breast cancer. The site also
has information about the ociety itself, its publications and programs.

CancerBACUP: http://www.cancerbacup.org.uk
This is the UK's leading cancer information service.

National Cancer Institute: http://www.cancer.gov

This information is developed by the National Cancer Institute in
the USA for health care professionals, cancer researchers and the
general public.

OncoLink: http://cancer.med.upenn.edu
This site is sponsored by the University of Pennsylvania Cancer Centre,
USA. It has information for patients and their families and friends.

*Please note that some of the information on websites from other countries
may only apply to people in that country.

There are many internet sites about cancer and breast cancer. You may also
like to ask your doctor about other internet sites that could be suitable
for you.

171
Most breast cancer is not inherited
Breast cam:er is i.l l'Ol1lmOn di.se::tse: abom 1 in 11
women in AU~lralia \"iIl develop breast cancer by
age -S. A, ~I rC"lIlt, many women have a relauve with
breast t-anccr - simply hy chance. Some women have
a strong family hi"'lory of hreast cancer, for example
St;:\'cl:l1 do:o,c hlood relati\t,~:-. on (he same side of the
f~l1nily who havc the disease. Thesc \.vomen may have
Illherited a f..lllll in a gene which may eventually lead
10 tile development of breast cancer. However, lhis is
uncommon and I~s:-. than :;n.u of all breaSl cancers are
caused by an inherited gene faulr. And although a
woman who inherit~ a gene fault doc:-- have an
incn:J~ed chance of developing breast cancer, she
may never c1evdop the disease.
Category 1 - Population Risk
If the currenl hblOry of breast cancer in your close
relatives pUh you in this category, or if you have no
relatives with hre:tst cancer. your risk of breast
cancer is ::Jhout the s:lme as {hat of the greal majority
of women in the general population. At the present
time, you <.10 not need to do anything morc th;.In any
olher woman in (he population. Like :tU women, yOll
are advised to:
Category 2 - Moderately Increased Risk or Category 3 - Potentially High Risk
If the current history of breast cancer in your dose
rdatives puts you in these ca(egones, you may have
an increased rl.-;k of developing breast cancer. You
will be in either "'cgory 2 (Modcmtely Increased
Risk) or in Category 3 (Potentially High Risk). Make
~tn appointmcnt to St..."e your general practitioner to
find our which of dlesc rwo C'dtcgories you are in
according 10 Advice about familial aspects ofbreast
cancer and ovarian cancer- A Btade/or beallb
professionals, More informarion abou( each of these
twO l.""ategories is given below:
Category 2 - Moderntely Increased Risk:
Although wumen in this group have a l110derJrely
increaseu risk of developing breast cancer
compared with women in the general population,
75 - 9QOh willllQl gel hreasl cancer ar any time in
their life.
• Sce your general practitioner without undue dehlY
abollt any breast changes which are not normal
for you
• Yuur general prncritioner will aclvbe you about
how often yOll should be having mammograms
and hreasl examinmions
172
Your family history becomes more important in
increasing your risk of breasl cance.r:
• The morc blood relatives you have on the ~
"de of the family who have had breast (Jnccr
• The youngt'r these rel:1tives were when they were
first diagnosed
The more closely related these rela(jves are 10 you
How do I fUld out if I may have an increased risk
of developing breast cancer?
Y(lU may like lO complete...' the tick-box questions over
the p.lg~ Based on your family history, you will be in
one of thes\..' three categories:
• See your general practitioner without undue delay
about any breast change~ which an.: not normal
for you
• Ask your general practitioner aboUl how often you
should have your breasts examined
• If you are over 50, ring 13 20 50 for a free
screening mammogram with BreastSneen every
twO years
• If you think you need a more precise risk
assessment, your genenll practitioner can consult
;'1 specialist cancer service or a fdmily cancer clinic
and can discus.') their advice with )'OU
Category 3 - Potentially High Rislc
Allhough \",omen in thi:, group have a pOlenti::tlly
high risk of developing breast cancer compared
with women in the general populalion, 50 - 5%
will D.ill ger bre;'ISl cancer at ~my time in their life.
• See your general practirioner without undue
dchly abolH any new breast changes which are
nOI normal for you
• Your general practilioner may refer yOll to a
cancer specialist. The speci::dist will help to
plan how often you should be having
mammognlms and breast examimltions, ~lI1d will
advise yOll ~Ibout any other examinaLions Lhat
you may need to have
• If yOll wam more information abour your risk
Or that of your family, your doclor may refer
you to a family cancer clinic for advice:,
appropriate counselling, management and
genetic lesling if ir is ~Ippropriare for yOll
 QUESTIONS ABOUT BREAST CANCER IN YOUR FAMILY
rOll can tint..! oul if you may haye an incre:I\L'CI ri'ik of de\'eloping hrensl ('3ncer hy cornplclin,g the tick-box que..tions helow.
YOll \\ ill be in eilber Category 1 (population Risk) or m Category 2/3 ( loderately Increased RiskIPOIcntiaIJy High
Risk). 111t'.coe c-.ucgoril."" arc d~rilx--d on Ihe ~\ t:rst: ")idc of thL"i p:.lgc

IlIstructiolls:
Please tel/us about YOllr blood reJafil'l!s. your motbcl; sisters and tlaugblers, cmd )'0111' grandmothers, aUllts anti
nieces 011 both )'OUI' mnlber:~ fJ.IJ.f!.j'Our/allJer's sides o/tbe/r,mi{){
Please lick Ibe ((I/SIl'ers below Ibat are most appropriate 10 Jl()lIr/rllniO'.
lfyolI fliP IlIlSWl? of Ibe (I/lSll'el; please lick NO 0,. OONT KNOW

1. Have any of dlese blood relatives - your modIer, sisters, daughters, grandmodIers,
aunts and nieces - ever had breast cancer?
D Go (0 qut':'ltion 2.

'\'0 or uon", km)\\ o Go to Category 1 on:r the paKt' and DO NOT answer any more questions.

2. Have any of your modIer, sisters or daughters - ever had breast cancer?
D Go [0 question 3.

No or don't kl1(m D Go le) qUL','ltion :; and DO NOT :lnSwef questions 3 or -I.

3. Were any of dIe women in question 2 diagnosed widI breast cancer before
dIe age of 50?
o Go 10 C..1lcgory 2'3 over (hc page and DO OT an:-.wcr any more que:-'lion~.

So or uon'l know o Go (0 qlll.~lklll -I

4. How many women in question 2 have had breast cancer?

One onll o Go to qlll..... lion '5.

Two or more D Go to Category~ over the pflge and 00 NOT an,..;,\,- er any more questions.

5. Have any of dIese blood relatives - your grandmodIers, aunts or nieces, on eidler
your modIer's or your fadIer's sides of dIe family - ever had breast cancer?
D Go to qUl;":\lion 6.
o Go to ~Ol)' 1 on~r the pag~ ;lnd DO NOT answer any more que.,lt()n.·~.

6. Please tick ONE of dIe following statements dIat describes your blood relatives - your
modIer, sisters, grandmodIers, aunts and nieces - who have ever had breast cancer:
I h:1\'I".' ~ hl<xx.! n:l:uiv(' \\ ho ha . . had bn.--ast t ..a nccr o Go to Category] 0\ er the page.

I h;l\'e QW;: hlood n:laliv<.' on each side of nw t~lJllil)' \\'ho han.:' hrtt! hre:l..l cancer D Go to CmegOly 1] m'cr the page.
I have two or !Don; hlood relative.. . on my mother's side who hilve had breast cancer D Go to ~regol)' 213 the page, OV<..:I'
:\ote' daughtc"" ..lt1d si.. .tcrs can bl.~ counted on dthl'r sick, of the family.

r hU\"t, Iwo Of more hlood relativei un my faIl ':-. si I'" who h~{\"e h~d hre::L...1 cancer D Go ID Category 2 3: 0\ er Ihe page.
;'\o(e: daughtl.'I' ;lI)d .. iSle" Gm he counted on eilhc:r side of lhe famil~

This questionnaire was developed and trialed in collaboration with BreastScreen Australia
Copies of this information sheet can be obtained from the ational Breast Cancer entre.

173
You may like to use these pages to make your
own notes:

174
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