Phyllodes tumours:

borderline malignant and malignant

This booklet is for people who would
like more information on borderline
malignant or malignant phyllodes
tumours. It describes what they are,
the symptoms, how a diagnosis is
made and possible treatments.
We hope this booklet will help you to
discuss any questions you may have
with your specialist team.

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2 Call our Helpline on 0808 800 6000

What is a borderline malignant or malignant

phyllodes tumour?
Phyllodes tumours are smooth, hard lumps of tissue that grow in the
stroma (supportive tissue) of the breast. They can sometimes grow
quickly and become quite large.
Phyllodes tumours are grouped into three types:
benign (not cancer)
borderline malignant (low
malignant (high grade).

grade)

They are grouped according to how they look under a microscope.

Pathologists (doctors who examine tissue from a biopsy or surgery)
decide this by looking at a number of things. For example, how quickly
the cells are dividing, how abnormal the cells are and whether there
is a clear border between the phyllodes tumour and the breast tissue
around it.
Borderline malignant and malignant phyllodes tumours are rare. They
account for less than 1% of breast cancers.
Phyllodes tumours are most common in women between 40 and 50
who havent yet been through the menopause, although they can occur
at any age. Malignant and borderline malignant phyllodes tumours can
also occur in men, although this is extremely rare.
If you have a benign phyllodes tumour, see our Benign phyllodes
tumour leaflet as the information in it will be more relevant to you.

How is a borderline malignant or malignant

phyllodes tumour diagnosed?
Phyllodes tumours are diagnosed in the same way as other breast
cancers. This may include a mammogram (breast x-ray) and/or an
ultrasound scan, followed by a fine needle aspiration (FNA) and/or a
core biopsy.
Your specialist may also suggest that you have a magnetic resonance
imaging (MRI) scan. This scan uses magnetism and radio waves to
produce a series of cross sectional images of the inside of the breast.

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Phyllodes tumours are sometimes difficult to diagnose because they

can be confused with other breast problems, such as a benign breast
condition called a fibroadenoma. Doctors may not be sure of the
diagnosis until the whole tumour is removed and seen by a pathologist.
For more information about these tests, see our Your breast clinic
appointment booklet.

How is a borderline malignant or malignant

phyllodes tumour treated?
Surgery is usually the only treatment needed for a borderline malignant
or malignant phyllodes tumour. Your specialist will discuss with you what
type of surgery you need.
The aim of the surgery is to remove the whole tumour with a margin
(border) of normal breast tissue around the edge (known as a clear
margin). Its important to have a clear margin of normal breast tissue
when the lump is removed to reduce the risk of the tumour coming
back. If there isnt a clear margin after the initial surgery then more
surgery is usually recommended.
You may be offered a lumpectomy (also known as a wide local excision),
where only the tumour and a margin of normal breast tissue is removed.
If the tumour is large compared to the size of your breast, you may need
to have a mastectomy (removal of all the breast tissue).
Unlike other types of breast cancer, borderline malignant or malignant
phyllodes tumours rarely spread to the lymph nodes under the arm
(axilla), so these will not be removed routinely during surgery. However,
your surgeon will look at your individual case and recommend the best
surgery for you. You may want to read our Treating breast cancer and
Your operation and recovery booklets for more information.
If you are having a mastectomy you will usually be able to discuss breast
reconstruction. This can be done at the same time as your mastectomy
(known as immediate reconstruction) or at a later date (known as
delayed reconstruction). If youd like more information see our Breast
reconstruction booklet.

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Are there any adjuvant (additional) treatments

after surgery?
If you have a borderline malignant or malignant phyllodes tumour, you
wont usually need any other treatments such as radiotherapy and
chemotherapy after surgery. However, your surgeon may want you to
see an oncologist (a doctor who specialises in the treatment of cancer)
to look at your individual situation.
Hormone (endocrine) treatment is sometimes used to treat breast
cancer but current evidence shows that this isnt useful to treat
malignant phyllodes tumours.
Clinical trials are looking at the best way to treat borderline malignant
and malignant phyllodes tumours. Your specialist team will be able to tell
you if there are any trials that you could take part in.

What if it recurs or spreads?

In most cases, a borderline malignant or malignant phyllodes tumour
is treated successfully by surgery. But sometimes the tumour can
recur in the breast (known as a local recurrence). If this happens to
a borderline malignant phyllodes tumour, it can either come back as
borderline or malignant.
If a lumpectomy was carried out the first time, more surgery will usually
be offered.
Radiotherapy may also be offered either alone or after surgery.
Malignant phyllodes tumours can spread (metastasise) through the
bloodstream to other parts of the body; although in the vast majority of
cases this does not happen. If a malignant phyllodes tumour spreads,
the most common sites for it to spread to are: the lungs, pleura (the
lining of the lungs) and bones, although other areas of the body can
be affected.
If your malignant phyllodes tumour spreads, you will be seen by
an oncologist who will assess your case and recommend the best
treatment for you.

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Follow-up
Your follow-up care after treatment for a borderline malignant or
malignant phyllodes tumour will vary depending on the hospital where
you are being treated. Your individual situation and the hospitals policies
will both play a part. Its usually recommended that you have a yearly
follow-up appointment and a mammogram (after a mastectomy this will
be done on the other breast).
You will be given information about who to contact in case you
have concerns in between follow-up appointments or develop any
new symptoms.

Living with a borderline malignant or malignant

phyllodes tumour
Being told you have borderline malignant or malignant phyllodes can
be a very anxious, frightening and isolating time. Having a rarer type of
breast cancer may add to your anxiety. However, there are people who
can support you, so dont be afraid to ask for help if you need it. Let
other people know how you are feeling, particularly family and friends so
they can be more supportive.
Some people find it helpful to discuss their feelings and concerns with
their breast care nurse or specialist. If you feel youd like to talk through
your feelings and concerns in more depth over a period of time, a
counsellor or psychologist may be more appropriate. Your breast care
nurse, specialist or GP can arrange this.
You may also find it helpful to talk to someone who has had a similar
experience to you. You can do this either one to one or in a support
group for more information call our Helpline on 0808 800 6000 (Text
Relay 18001).

Visit www.breastcancercare.org.uk 11

About this booklet

Phyllodes tumours: borderline malignant and malignant was
written by Breast Cancer Cares clinical specialists, and reviewed
by healthcare professionals and people affected by breast cancer.
For a full list of the sources
we used to research it:
Phone 0845 092 0808
Email publications@breastcancercare.org.uk
You can order or download more copies from
www.breastcancercare.org.uk/publications
For a large print, Braille, DAISY
format or audio CD version:
Phone 0845 092 0808
Email publications@breastcancercare.org.uk

Breast Cancer Care, April 2014, BCC189

Edition 3, next planned review 2016

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