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Pathology of a phyllodes tumor

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I am 35 and have been diagnosed with phyllodes tumor of the breast, waiting to hear if it is benign or malignant. I have tried to do some research and am scared by what I read, it is so rare. Could you give some info to me.
I had it removed with a wide margin of tissue. What are the odds of it returning, should I think about breast removal?
And is it true that chemo and radiation don't work for it? Is there no hope if it has spread somewhere?

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replied May 24th, 2010
Breast Cancer Answer A12335

A phyllodes tumor of the breasts is quite a rare type (less than 1% of breast tumors). This tumor is known to be hard to distinguish it from other breast tumors. It is felt as a lump in the breast. The skin above might be reddish and painful to the touch. The usual methods for diagnosing breast tumors are pretty useless when diagnosing a phyllodes tumor. The most secure way to determine that a breast tumor is a phyllodes tumor is removal and pathological examination under a microscope. This would also show the true nature of the tumor.

If the tumor is benign (most of them are), then the prognosis is good. Removal would still be recommended in order to prevent the tumor from turning into a sarcoma (malignant tumor of the breasts). Malignant forms are known to form metastasis even after two years in distant organs.

This tumor does not respond well to radiation, chemotherapy or hormonal therapy. That is why removal of the tumor is always preferable. It is up to the thoracic surgeon to decide (based on the pathological results) whether mastectomy (removal of the breast) or lumpectomy (removal only of the part of the breast that is affected) would be performed.

It is important to remember that the treatment and the prognosis would depend on the results from the pathological microscopic examination.

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