Phyllodes Tumour - Questions

sparrowhawk

Hi ladies,

Maybe you have seen my posts in other boards, but I really want to get some advice and info from others who have a similar experience.

Some background about me: I'm 26 years old and have a history of multiple fibroadenomas (14 at last count) in both breasts, with the first diagnosed at age 19. In July I noticed that one fibroadenoma (actually, the one I first ever felt all those years ago) had seemingly doubled in size overnight. That led to doctor's appointment, ultrasound (where the lump was identified as unusual and documented as two growths, not one), core biopsy (where radiologist assured me it was a fibroadenoma), surgical consult (again, reassurance of fibroadenoma), and excisional biopsy on 8/11.

Today my lump was diagnosed as a benign phyllodes tumour, measuring just under 5cm. I know it's not malignant, but I still have some questions:

My surgeon took a small surgical margin around the tumour (5mm). I'm thinking it's probably because she was sure it was a fibroadenoma and I am small-breasted. She did tell me that phyllodes do have a tendency to grow back, especially if the margins are not big. I am wondering: are these margins too small? What does the approach tend to be if it grows back - just removal again, or more serious treatment like mastectomy?

How often should I go for screening? Every 6 months, every year?

This whole thing has kind of knocked me for a six. I had doctors telling me it was two lumps, when I knew it was one; I had doctors telling me it was a fibroadenoma, which I accepted, but it's not. I was so thrown about by the diagnosis that I wasn't concentrating and actually had a small car accident on my way home, which shook me up even more. I am not normally an anxious person, so am concerned at how I am feeling. Any good suggestions for self-care?