ADH LCIS Lumpectomy #2 Now What?
When I was first diagnosed with ADH 2 years ago my surgeon mentioned prophylactic mastectomies and I thought he was very extreme for bringing it up. Now I just finished my second surgical excision for ADH (pathology showed LCIS). I'm starting to wonder what happens next- I can't be having surgery every 2 years! I think my risk calculations are approx 40%. I'm wondering if I should actually be seriously considering the prophylactic surgery.
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We're so sorry you find yourself here and dealing with this, @lettucenyc. The decisions around how to approach being high risk and considering prophylactic therapies and procedures can be so difficult! Even more so because there is rarely a right or wrong, yes or no, black or white solution.
Have you spoken to your surgeon about next steps following this latest excision? It may be time to revisit the conversation, with second or third opinions from other surgeons and breast specialists. We know it's a lot to consider, and ultimately the decision is yours and yours alone, but reviewing all your options again may give you a new, different perspective.
Please do keep us updated on how you're healing and what your next steps may be. We're all here for you!
The Mods
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I'm sorry you're going through this! I have ADH too (one surgery). My surgeon does not think prophylactic mastectomies are necessary but is willing to do it anyway. That is the choice I've made. Nobody can tell you what to do, it's about what is right for you. I would find it hard to know I could have avoided cancer if they ended up finding something. My risk is similar (40-45% depending on the calculator) and even for people of normal risk, ADH has a 35% chance of turning into cancer over 30 years. Plus you have to weigh how you feel about the screening and potential biopsies as you said.
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2 yrs ago, I had surgical excision after stereotactic biopsy of calcifications showed ADH, (no upgrade by pathology after excision). Im high risk: grandmother and sister IDC, dense breasts, and now ADH risk factors. All genetic testing negative for known mutations. Screening mammo/US and breast MRIs alternated every 6 months since. Met with medical oncologist but cannot take tamoxiphen as I have a genetic clotting risk. (One less tool for prevention.) 18 months after excision, more suspicious calcifications appeared and in different areas of my breast. One spot biopsied, again ADH and needs excision. Discussed prophylactic mastectomy option but delayed a decision until after summer. Radiologist wants another spot biopsied and warns there will be many more. (they cannot rule out malignancy as to any of my calcifications without repeating this cycle of biopsy, excision, with stressful wait for pathology report to find out if upgrade.) Rather than more biopsies and excisions, and many years of 6 month interval high risk monitoring (I’m 49 yrs old), I’ve scheduled prophylactic bilateral mastectomy with DIEP reconstruction. I have young children, worry greatly about my risk, and need to be proactive. My sister did great with her lumpectomy, radiation and AI treatment but it was not a walk in the park and not without side effects.
My radiologist, surgical oncologist and reconstruction surgeon - while leaving this for me to decide - gave me this option and are supportive. My medical oncologist offered that she thinks I am making the right decision. I didn’t ask her opinion but it felt good to hear. Will see what pathology shows. Unless there is an upgrade to IDC, there should be no more treatment. Of course, I’m worried about recovery and what can go wrong with DIEP. This may all be a ridiculous amount to go through for peace of mind.. I hope with further research, over time, there will be a genetic test that will predict if your ADH is the result of a benjgn process or is indicating a precursor to malignancy, so the most informed decision can be made.1
