Bilateral mastectomy short & long term SE & QOL

dragonsnake

I need help to decide on treatment. I was originally diagnosed with 3 cm DCIS, high  grade, comedo necrosis. I did a left breast lumpectomy, The original extracted piece had two involved margins and 4cm DCIS. Surgeon cut around the piece , the originally bad margins were cut out, but the margin on the good side showed more DCIS. I did a second lumpectomy, the newer  4.5 cm DCIS was found and excised. I'm waiting for details about margins;  report is confusing. I was thinking on doing a left mastectomy or  a bilateral one after learning that my DCIS is multifocal, and was not picked up as such on the mammo. My surgeon did not want to do MRI because it's not very conclusive, according to him. I always had pain and burning in both of my breasts.  I do not want radiation due to my previous expose and long-term side effects. I cannot do hormonal treatment due to a big uterine fibroid + many small ones,  although I might consider a total hysterectomy. My question is: what are the long-term side-effects of a simple BMX without any reconstruction in terms of pain , neurological symptoms, numbness, inability to use hands, lymphedema, etc. ? I really do not care about the looks, but I'm very concerned about my quality of life: I do not want to be in pain, with  lymphedema, mentally and physically non-functional. I have a very intellectually demanding job, I cannot afford not being able to concentrate. I need to be able to do advanced math and physics at high level. As I see it now, I can keep cutting pieces of my breasts as they become cancerous, or cut out everything at ones in a hope that that's will be it. Any advise on this matter will be very helpful. Thank you

Kroge6

I just had a double mx for high grade dcis comedonecrosis. I think it was totally worth it. Dcis is so hard to find in a Mamogram. We were able to see mine on an MRI. But I am glad I went to mastectomy route. I am two weeks out and I feel pretty good. As far as side effects there is no way to predict if you will get them or not. Good luck. It is such an overwhelming and hard decision.

kathy1925

Hi,

I'm six years out from bilateral MX, no reconstruction. Sentinel nodes were taken from both sides. My QOL is excellent (full range of motion, long distance walking, bocce, aerobics and Tai Chi). I needed some short term (about 3 weeks) outpatient rehab after the surgery. I went back to work 5 weeks after the BMX. Fortunately I have no long term SE's. Best of luck to you in your decision.