I am 34 yrs old and have recently had a tumor removed from my right breast. I have been told that it was borderline phyllodes tumor. It was 10cm, the size of a rugby ball! Although I am happy that it was benign and has been widely excised and all margins clear,I have a number of questions:
1. Does the borderline mean that it is borderline between being benign and malignant?
2. Or does the borderline mean that if may not be a phyllodes tumor at all?
3. If it is not a phyllodes, what else may it be?
4. What are these tumors made of?
5. I know I have to keep a watch on things as there is a good chance that it may re-occur, is there any specific period when it may be most likely to return?
6. Can it return in another site or in the other breast?
I generally find that the answers are given in "medical" terminology and I was hoping that the answer here would be clearer and easier to understand. I would appreciate any help or advice that may be out there to help me get my head around this.
Dear hotstuff: A phyllodes tumor is a tumor that occurs only in the breast, and what causes it remains unknown. It is very rare--less than 1% of all beast tumors are classified as phyllodes tumors. This type of tumor develops in the stroma (connective tissue) of the breast, in contrast to carcinomas, which develop in the ducts or lobules.
Phyllodes tumors vary in their aggressiveness and can be classified as benign or malignant. The term cystosarcoma phyllodes is often used to describe the malignant phyllodes tumors. A borderline phyllodes tumor may mean that there are some malignant features to the tumor.
Phyllodes tumors tend to be large--the average size is about 5 cm--and to grow very quickly. These tumors do not typically cause any pain and are hard, round, and easy to feel.
Phyllodes tumors are typically removed with an excision. Both benign and malignant phyllodes tumors have a tendency to recur in the breast in which case a second excision or possibly a mastectomy may be needed. There is no specific time period in which a phyllodes tumor may recur. Malignant phyllodes tumors do have the ability to metastasize (spread to other parts of the body), and when they do the lung is the most common site of spread. Unlike with a typical breast tumor, there is no systemic treatment (chemotherapy or hormonal therapy, like tamoxifen) that has been shown to reduce the risk of recurrence. It is important to keep in mind, though, that these tumors are rare and the percent that metastasize is relatively small.
I'm trying to find out any books, support groups, doctor referrals (in San Fernando Valley, CA), homeopathic remedies, etc. for phyllodes tumors of the breast. I'm a Social Worker and have a client that has endured a double mastectomy, is waiting for reconstructive surgery, and has recently discovered that the tumors are growing back! She only has MediCal as insurance, and is having a hard time finding support and suggestions on treatment options. Any feedback would be so greatly appreciated to help this nice woman!
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