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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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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 grade) malignant (high 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-upYour 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).

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Breast Cancer Care, April 2014, BCC189 Edition 3, next planned review 2016

About this bookletPhyllodes 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

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Visit www.breastcancercare.org.uk or call our free Helpline on 0808 800 6000 (Text Relay 18001).

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