← Return to High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS

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@cindylb

My experience may be similar in some ways and not in others...but here's my experience. I have had a bi lateral mastectomy for invasive Lobular Carcinoma (in 2015). In 2013 I was diagnosed with LCIS (lobular carcinoma in situ). I did 6 month check ups and two years later had invasive cancer, Stage 1. I think, at the time, it was reasonable to wait and see but if I knew then, what I know now...I would have opted for the bi lateral mastectomy in 2013....but I didn't and the doctors couldn't know. I was lucky my cancer was caught early but I hit some bumps along the road. First, I worried a lot, second the lymph node biopsy of the Stage 1 bi lateral mastectomy resulted in lymphadema of my right arm, which has caused me many problems over the years and third....the oncologist who I was seeing for check ups ignored my breast lump I found and told me to 'wait'. I didn't wait and I'm grateful I asserted myself because I would have been much worse off if I hadn't moved forward as quickly as I did. It should be noted that my 2013 LCIS diagnosis was in my right breast and my invasive cancer was in my left breast. Lobular Hyperplasia seems to show up in both...hence, the reason I opted for the mastectomy. I was in my mid 50's at the time and I opted not to get reconstruction. The extra surgery, time and pain wasn't something I wanted to experience. I don't regret that decision...especially now that I am diagnosed with two autoimmune conditions. My body probably wouldn't like foreign objects inside my chest wall. Heck, at this point....my own body doesn't even like itself, ha ha. Push for your rights, be your own advocate, get second opinions, reach out to others (as you're doing) and research on safe, reputable sights and get a good idea of what many medical professionals feel. Do what your instincts tell you to do as well. You know your own body and mind. Hugs

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Replies to "My experience may be similar in some ways and not in others...but here's my experience. I..."

Thank youso much for sharing your experience with me. I think ultimately I will be seriously considering the mastectomy if anything is found this week. I feels so out of sorts from the Tamoxifen and now have to take more meds gust to manage the side effects. I think you were absolutely right to be assertive. There are too many unknowns to manage this pretty much for the rest of my life, waiting for the other shoe to drop. Thank you!