Anyone with phyllodes?
Hi there! 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. Soon I began to see visible veins spreading across my breast. That led to doctor's appointment, ultrasound (where the lump was identified as irregular, lobulated and having peripheral vascularity, 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. On Friday my lump was diagnosed as a benign phyllodes tumour, measuring just under 5cm. Very rare and very aggressive. I have learned that they are always viewed as having malignant potential (actually in a couple of places I read that they are always treated as a form of breast cancer, regardless of their grade). There's a chance it can come back, and more aggressively, especially in the next few years. My surgeon took very small margins (5mm at most) when she removed the lump; I'm thinking probably because she was sure it was a fibroadenoma. We were both very stunned that it wasn't. She also told me to go for screening once a year for the next two years, but I have since read that it's more advisable to go every six months. It looks to me as though once you have a phyllodes, it stays somehow in your system. To be honest, my surgeon didn't tell me much and I am wondering now how much she really knows about phyllodes. I don't blame her though, as they are so rare. I'm just wondering if anyone out there also has an experience with phyllodes. I'm feeling a bit alone in this. People who know I've had an issue are saying it's great it's not cancer. Well, of course; I am so happy it's benign, but the possibility of recurrence (which is looking more likely for me, given my small surgical margins) means I'm not yet in the clear. I'm recovering well physically from the surgery, but emotionally I'm still struggling a bit. I'm trying to take it one day at a time and not worry about something that might not happen. Any help, any words would be so meaningful!