Phyllodes AFTER bilateral mastectomy

[buffalosurvivor]

I chose to have a bilateral mastectomy on Friday the 13th of March, 2009. I had been diagnosed with CP, Cystosarcoma Phylloides of the right breast and once I began to do the research and understanding the ineffectiveness of radiation or chemo and the importance of aggressive surgery to treat, I felt it was my only option. After all, I NEVER wanted to put my family, husband, friends through this again...

Lo and behold, a mass was found (two and a half months after my last checkup) and they suspect Phyllodes once again. In 2009 mine was a "nipple sparing" bilateral mastecomy. I remember vividly the conversation in the prep room as the plastic surgeon drew on me with a sharpie indicating what she and her colleague were going to do. The plastic surgeon asked the breast surgeon why she would keep the nipples and the breast surgeon replied "why would you take them if you don't need to?". Standing in front of me were two very educated and respected doctors in their fields; I never questioned them--I wish I would have now. The only thing I can think of (with my lay person's understanding) is that there must have been tissue left near the nipple that this new tumor is now calling a home. In addition to having just undergone a mastectomy and just being baffled by the recurrence, one of my other concerns is that I had the CP in my right breast and this new growth is in my left.

I've been amazed that there's so little information around about CP and that even the medical community is confused. Post mastectomy, I had a conversation with my OB/GYN, again, a very respected doctor in the field, who argued with me that I didn't have "cancer"... that it was "only a Phyllodes".

I also had a huge fibroadenoma (allegedly) removed from the right breast in 2005. The malignant CP (that led to the mastectomy) was in identically the same spot, four years later. Now I'm learning that some CP's are misdiagnosed as Fibroadenomas... I bet that was what it was originally.

I'm hoping that I'm about to meet a Senior Cancer Specialist who cares enough, or is intrigued enough about the new diagnosis to push the envelope and question assumptions.
It's daunting when you know more than the doctors do. And scary.

My lesson is question, question, question. And if you don't feel that you're in the care of someone who knows what they're doing and who prescribes a path with confidence, get out of there and find someone who does. Doctors can be very intimidating.