Phyllodes tumours

Phyllodes tumours are rare and usually benign (not cancer). However, some phyllodes tumours are malignant (cancer).

They are grouped into 3 types:

• Benign (not cancer)
• Borderline (with features between benign and malignant)
• Malignant (cancer)

Phyllodes tumours are usually smooth, firm lumps in the breast.

They often grow quite quickly and can be quite large.

Sometimes the skin over the lump is red.

It’s unlikely more than 1 phyllodes tumour will develop at a time, though this does sometimes happen.

Phyllodes tumours can affect people at any age. However, they’re most common in women between the ages of 40 and 50 who have not been through the menopause.

Phyllodes tumours are very rare in men. When they do happen, it’s usually in men who have gynaecomastia (a benign condition where male breast tissue is enlarged or swollen).

If you see your GP because of a breast lump, they’re likely to refer you to a breast clinic where a doctor or specialist nurse will examine you.

You may be diagnosed with a phyllodes tumour after going for routine breast screening without having found a lump.

Tests you may have

Phyllodes tumours are diagnosed using a number of tests. These may include:

• A mammogram
• An ultrasound scan
• A core biopsy

Other tests

Although not commonly used to diagnose phyllodes tumours, you may also have:

• A fine needle aspiration (FNA)
• A vacuum assisted biopsy
• An MRI scan
• A CT scan

Phyllodes tumours are often difficult to diagnose because they can look like other breast conditions, such as fibroadenoma.

If your diagnosis is still not clear after you’ve had the tests, you may need to have an operation to remove the lump. This is so the whole area can be examined to get a definite diagnosis.

Surgery

Phyllodes tumours are treated with surgery.

The 2 main types of breast surgery are:

• Breast-conserving surgery (wide local excision or lumpectomy) – removal of the tumour with a margin (border) of normal breast tissue around it 
• Mastectomy – removal of all the breast tissue, usually including the nipple area

The type of surgery recommended depends on the position of the phyllodes tumour and how big it is.

If you have breast-conserving surgery, sometimes you'll need further surgery to remove more tissue. This may be the case if there’s not enough normal tissue around the tumour. Your treatment team will discuss your results with you and tell you whether you need a second operation.

You will not usually have lymph nodes removed during surgery. This is because borderline or malignant phyllodes tumours very rarely spread to the lymph nodes under the arm.

Your treatment team will talk to you about the type of surgery you need. If you're having a mastectomy, you may also be offered breast reconstruction.

Other treatments

If your phyllodes tumour is malignant, you may need other treatments after surgery. These are called adjuvant treatments.

Your treatment team will tell you if you need any additional treatment. They can also tell you if there are any clinical trials you could take part in. 

Radiotherapy

Radiotherapy uses high energy x-rays to destroy cancer cells. 

Malignant phyllodes tumours are often treated with radiotherapy after breast-conserving surgery (wide local excision). This is done to reduce the risk of the tumour returning in the same breast.

Radiotherapy may occasionally be offered to treat a borderline phyllodes tumour.

Chemotherapy

Chemotherapy is rarely used to treat malignant phyllodes tumours. Your treatment team will discuss this with you if they feel it would benefit you.

Treating a malignant phyllodes tumour that has spread (metastatic tumours)

Although rare, malignant phyllodes tumours can spread to another part of the body.

A malignant phyllodes tumour that has spread to other parts of the body is usually treated like a soft-tissue cancer (sarcoma).

There’s more information on soft tissue cancers on the NHS website.

You can also find out more on the Sarcoma UK website.

Your treatment team will discuss your treatment options with you, and you may be referred to a specialist sarcoma oncologist.

Benign phyllodes tumours can sometimes come back, usually in the same area of the breast, so your treatment team may want you to have follow-up appointments.

Very rarely, a benign phyllodes tumour can come back as a borderline or malignant phyllodes tumour.

How you're followed up will depend on your individual situation, but you may have follow-up appointments for 5 years after your treatment has finished. Your treatment team will let you know what follow-up appointments you'll have so you know what to expect.

Being diagnosed with a phyllodes tumour does not increase your risk of developing an invasive breast cancer.

It’s important to be breast aware. Contact your treatment team or GP if you notice any changes in your breasts, no matter how soon you notice them after your diagnosis of a phyllodes tumour.

Being diagnosed with a phyllodes tumour can be a difficult and frightening time, even if it’s benign.

Our Someone Like Me service can put you in touch with someone who understands what you’re going through if you’ve had a primary breast cancer diagnosis. See the bottom of this page for more information.

If you'd like any further information or just want to talk things through, our nurses are ready to listen on our free helpline. See the bottom of this page for ways to get in touch. 

You may also want to speak to the Sarcoma UK support line.