This article has been written by darkfairy, the moderator of our Phyllodes forum

"I was first diagnosed with a benign fibroadenoma when I was 14 years old. I had a lumpectomy shortly after my 15th birthday and from then onwards, I have had somewhere between 20 and 30 benign fibroadenomas removed from my breasts. When I was 26 years old, I went in for a routine lumpectomy to have a cluster of, what were assumed to be, fibroadenomas and cysts removed. Three of the solid masses were found to be benign phyllodes tumours - this was the first time I had ever heard of them and I set about trying to find out more about them. Every time I saw a new medical professional, I had to tell them what phyllodes tumours are and how they respond because not enough is known about them.

Over the course of the next two and a bit years, a new cluster of tumours returned and, not knowing what they were, I decided to veer on the side of caution and have a preventative bilateral mastectomy. This is now my 8th operation and even in hospital, I had nurses asking why I hadn't had any lymph nodes removed! This is the information I spent nearly three years finding out about the "monsters" that were growing in my breasts."

A phyllodes (pron: fill-oi-dee) tumour is a very rare solid mass of the breast. It gets its name from the leaf-like pattern on its surface and can fit into one of three categories - benign, borderline or malignant (sometimes called a phyllodes cystosarcoma). It will often show up as a solid mass in ultrasound scans and mammograms and comes out as "abnormal cells" during FNA biopsies (fine needle aspirations) - this means these tumours are very difficult to initially diagnose.

Benign phyllodes are frequently mistaken for fibroadenomas (benign breast lumps) however it is worth pointing out that fibroadenomas rarely grow larger than 3.5cm in size, whereas benign phyllodes can grow extremely large. There have been cases of some growing to 30cm and the usually grow very quickly, sometimes doubling in size over the course of a few weeks.

Phyllodes tumours of the breast affect less than 0.03% of the female population - they have not yet been found in men. They are normally found in menopausal women but an increasing number have been discovered in pre-menopausal woman - the youngest recorded patient so far was an 11 year old. It is not known how or why they grow nor what causes them. Some researchers suggest many phyllodes start off life as fibroadenomas and then mutate but there has not yet been any scientific proof of this.

Recent research has revealed that some phyllodes tumours have hormone positive receptors - this means that they are fed by the body's natural reserves of either oestrogen, progesterone or both. There have been no trials testing the effectiveness of hormone therapy (ie using drugs that supress the body's natural hormone levels like tamoxifen and zoladex) to date so their effectiveness on phyllodes tumours is not yet known. To date, phyllodes tumours have not been tested for the HER2 protein, which often responds to the drug Herceptin. It is not yet known whether this drug has any effect on the tumours.

Phyllodes tumours are made up from both breast tissue and connective tissue, unlike generic breast cancer tumours which are made exclusively from breast tissue. If a phyllodes tumour is found to be malignant, the malignancy will often only reside in part of that tumour, making core biopsies an unreliable method of diagnosis. Quite often a core biopsy will extract a tissue sample from the benign area of a phyllodes, giving a false negative result. Normally malignant phyllodes are diagnosed after surgery and this can be quite a shock to the patient.

The most effective method of treatment for phyllodes tumours is surgical removal. This is done under a general anaesthetic as part of an in-patient procedure. Depending on the size of the tumour, most surgeons favour a technique called a wide local excision. This is where the tumour and surrounding healthy tissues are removed. Phyllodes tumours have a recurrence rate of around 30% so it is essential to get a clean margin of healthy tissue to reduce the risk of it returning. This is the case with benign, borderline and malignant tumours. However as most phyllodes aren't diagnosed until after surgery, many patients find themselves needing a second operation to ensure that wide margins have been obtained.

In the case of borderline or malignant phyllodes, a study is currently being carried out in the USA whereby radiotherapy is used post surgical removal. This is still in its early stages although early results are promising - there have been no reported cases of recurrence so far. Further studies have shown the use of chemotherapy on phyllodes tumours of the breast to be inconclusive.

If a patient has a recurrence, a large phyllodes tumour or if the tumour itself is malignant, mastectomy is often recommended as the best course of treatment. Phyllodes tumours have not been shown to spread via the lymph nodes - they spread via blood vessels instead - so surgeons believe that a simple skin-sparing mastectomy is sufficient treatment alone. There is still some debate as to whether phyllodes can spread to the nipple so the jury is still out on whether nipple conserving surgery is a safe option. There is no reported increase in the risk of recurrence with reconstructions.

There is a very low risk of metastases with malignant phyllodes, especially if the phyllodes tumour has what is known as high mitosis. This relates to the speed at which the cells within the tumour multiply and spread. Common phyllodes metastases sites are the lungs, brain, liver and bones - metastases take on the form of sarcomas, which means soft tissue tumours. Some of these have been shown to respond to radiotherapy but there is no known cure. In the USA, there have been several successful uses of the chemotherapy combinations doxorubicin hydrochloride with cisplatin, ifosfamide and also cisplatin with etoposide although this is still a controversial subject as the drugs are extremely powerful with potentially life-threatening side-effects. Neither benign nor borderline phyllodes have been shown to metastasise.

If you are diagnosed with a phyllodes tumour, the first thing you should ask is whether it is benign, borderline or malignant. The second thing you should ask is whether clear margins were obtained through surgery. Once you have been diagnosed with a phyllodes tumour, it is essential that you have regular check-ups even after it has been removed. This is because a recurrence is possible at any time in your life. Generally speaking, follow-up appointments will be every 3 months for a malignant tumour and every 6 months for a benign one. This will reduce to once a year as time goes on.