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Oct 3, 2020 05:55PM
Oct 3, 2020 05:56PM
I hear you Mimi. Its tough. I started out with LCIS on my first biopsy and excision in 2005. I've lost count how many biopsies I've had. Maybe 5 sets of (imaging,then biopsy, then excision)? I've had LCIS, ALH, DH (not ADH). I'm currently waiting on the results on another MRI breast biopsy.
Prophylactic mastectomy is obviously a very personal choice. How much do your breasts mean to you? Have you witnessed someone who has had breast cancer? Died of breast cancer? Had a mastectomy/mastectomies? Normally, I work just out of my head, going with just the statistics for my case. Unfortunately, we just don't know what your chances are of getting breast cancer. As I'm sure you know, some people who have PMs have regrets. Others have a great time (well, as great as it can be), and others not so much. We don't know what our experience will be.
For me, I think the worst was discovering how little they really know. I really, really hate being given 'misleading' (or false) information. It was only on my ~5th doctor visit, that my GP said 'we don't know', about 2 years after my first LCIS diagnosis. I'd rather be told the truth (We Don't Know) than to be told 'Your cancer is gone' by my oncologist (when I never had cancer to begin with, why wouldn't my oncologist realize that? Is that what she tells her invasive breast cancer patients after they had a lumpectomy?) or 'Your lifetime risk is between 10% and 60%, probably closer to 10%, but you'll have to go to the literature for better numbers.' Well, I had. I'd rather be told 'We don't know and this is why we don't know.'
Many people go to the worst case scenario. That's a protection mechanism.
After so many biopsies, no matter what my chances are of getting invasive breast cancer in the future, when will it be cheaper for insurance companies to OK prophylactic mastectomies rather than going through so many biopsies? (That's assuming I will still have health insurance.) Of course, they certainly won't do one if I don't want one, but its a hard choice.
We are all different. In my humble opinion, the only poor choice is to do nothing and never get followed in the future. If you wish to do that, that is completely your right.
Its so hard to know what to do.
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov
12/8/2005, LCIS, ER+/PR-
1/24/2006 Lumpectomy: Left
7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)