Feb 27, 2010 10:07PM jenrio wrote:
Sorry to hear that. I too face a similar problem. My mammogram and ultrsound says probably benign "complex fibroadenoma" on my left breast, inner mid/upper quadrant, not near areola. it grew rather fast, more than doubling in the last 3 months. and it's now 3cm across. My surgeon offered me 2 choices:
1. core biopsy with optional lumpectomy if results are bad
2. excisional biopsy (no margins taken) with optional lumpectomy (if results are bad)
Personally i'd prefer a single lumpectomy, since i'm pretty sure i want excision, and don't want 2 operations in the worst case. but the surgeon seems very unwilling to do so.
Oh well. Mind telling me how fast does your tumor grow? how big they are currently and in the past and how long have you noticed them etc.? And any other information?
The problem with phyllodes is that it's such a rare tumor (1% of all malignant breast tumors), very few docs have seen a lot of them and specialize them. very few drug companies would customize drugs/therapy to target them. That's why chemo/radiation doesn't work on them, and death rate quite high for malign tumors. So patients need to find each other and share information, like growth rate, size of tumor, location, pathology report.
Also, remember, if you had your tumor excised, remember to ask how you can access the left-over samples. so in future if more genetic results are available, tests can be done on them.
I just created a google group