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 can be red.

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

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

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

A phyllodes tumour usually becomes noticeable as a lump in the breast.

Once you have been seen by your GP, you’ll be referred 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 (breast x-ray)
• An ultrasound scan – uses sound waves to produce an image
• A core biopsy – uses a hollow needle to take a sample of tissue, under local anaesthetic, to be looked at under a microscope (several tissue samples may be taken at the same time)

Other tests

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

• A fine needle aspiration (FNA) – uses a fine needle and syringe to take a sample of cells to be looked at under a microscope
• A vacuum assisted biopsy – uses a special needle connected to a vacuum to take a sample of tissue to be looked at under a microscope
• An MRI (magnetic resonance imaging) scan – uses magnetism and radio waves to produce a series of images of the inside of the breast
• A CT (computerised tomography) scan - uses x-rays to take detailed pictures across the body

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

If, after having tests, your treatment team cannot be sure of the diagnosis, 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 including the nipple area

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

If you have breast-conserving surgery, sometimes you may 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 whether you need a second operation.

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

Your specialist will talk to you about the type of surgery you need. If you are having a mastectomy, you may also be offered breast reconstruction.

Other treatments

After surgery, if the tumour is malignant, you may need further treatments. These are called adjuvant treatments.

Your specialist 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 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.

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

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.

Chemotherapy is rarely used to treat malignant phyllodes tumours. Your specialist will discuss this with you if they advise this treatment.

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

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

You’ll continue to be monitored after your hospital-based treatments finish. This is known as follow-up. Your treatment team will tell you what follow-up appointments you’ll have.

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

It’s important to be breast aware and call your breast care nurse or go back to your 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.