Phyllodes tumours of the breast: types, diagnosis and treatment

Phyllodes (pronounced fill-oy-dees) tumours are rare breast tumours. Cancer Research UK also lists the older name cystosarcoma phyllodes and notes that they can be either cancerous or non-cancerous. Macmillan Cancer Support says most are non-cancerous and that they usually affect only one breast.

They are grouped into three types: benign (non-cancerous), borderline (between benign and cancerous) and malignant (cancerous). Macmillan says it is uncommon for phyllodes tumours to spread to other parts of the body. Breast Cancer Now adds that a malignant phyllodes tumour that has spread is usually treated like a soft tissue cancer (sarcoma), which is why the abnormal cells are compared with sarcoma cells.

Phyllodes tumours can affect people at any age. Breast Cancer Now says they are most common in women between 40 and 50 who have not been through the menopause. They are very rare in men, and when they do happen it is usually in men who have gynaecomastia. Macmillan says doctors do not know the exact cause.

The most common symptom, according to Macmillan, is a firm, painless lump in the breast. Breast Cancer Now describes the lumps as usually smooth and firm, often growing quite quickly and sometimes becoming quite large, with the skin over the lump occasionally red. Occasionally more than one tumour develops, although this is unlikely.

A new breast lump, or a lump that is changing quickly, should be seen by a GP. Most breast lumps are not cancer, but they all need assessment, and a fast-growing lump deserves prompt review.

If you see your GP about a breast lump you are likely to be referred to a breast clinic, where a doctor or specialist nurse will examine you. Breast Cancer Now says a phyllodes tumour may also be found after routine breast screening without a lump having been noticed. Macmillan says the tests are the same as for any type of breast cancer.

Tests may include a mammogram, an ultrasound scan and a core biopsy, in which a needle takes samples of tissue using local anaesthetic. Less commonly, a fine needle aspiration, vacuum-assisted biopsy, MRI scan or CT scan may be used.

Phyllodes tumours are often difficult to diagnose because they can look like other breast conditions, particularly fibroadenoma. If the diagnosis is still unclear after tests, you may need an operation to remove the lump so that the whole area can be examined for a definite diagnosis.

Surgery is the main treatment. Breast Cancer Now describes two main types: breast-conserving surgery (wide local excision or lumpectomy), which removes the tumour with a margin of normal breast tissue around it, and mastectomy, which removes all the breast tissue, usually including the nipple area. The type recommended depends on the position and size of the tumour.

If there is not enough normal tissue around the tumour after breast-conserving surgery, further surgery to remove more tissue may be needed. The treatment team will discuss the results with you and say whether a second operation is advised. Lymph nodes are not usually removed, because borderline or malignant phyllodes tumours very rarely spread to the lymph nodes under the arm. If you have a mastectomy, you may be offered breast reconstruction, sometimes at a later time.

Other treatments are used less often. Malignant phyllodes tumours are often treated with radiotherapy after breast-conserving surgery to reduce the risk of the tumour returning in the same breast, and radiotherapy may occasionally be offered for a borderline tumour. Chemotherapy is rarely used and Macmillan says it is only used if a malignant tumour has spread to another part of the body, with drugs similar to those for soft tissue sarcoma. Hormone therapy is not used for phyllodes tumours.

After treatment you will have regular follow-up appointments with the hospital team. Breast Cancer Now says benign phyllodes tumours can sometimes come back, usually in the same area of the breast, and very rarely a benign tumour can come back as a borderline or malignant one. Follow-up may last for 5 years after treatment has finished, depending on individual circumstances.

Being diagnosed with a phyllodes tumour does not increase your risk of developing an invasive breast cancer, but it is still important to be breast aware and to contact your treatment team or GP about any change in the breasts.

Breast Cancer Now acknowledges that being diagnosed can be difficult and frightening even when the tumour is benign. Its nurses, peer support and the Sarcoma UK support line are among the sources of support it mentions for people with phyllodes tumours. Macmillan also hosts a breast cancer forum where people share experiences.

On the NHS, a suspected phyllodes tumour is assessed in a breast clinic and treated by a breast surgical team. Private breast clinics offer imaging and biopsy and surgical opinions, but because phyllodes tumours are rare and borderline or malignant types need specialist pathology review, it is worth asking whether the surgeon regularly treats them.