May 18, 2018 11:32AM light1candle wrote:
Yes, I did get a second opinion, not so much because I didn't believe my pathology was correct, although I had heard the story of Rita Wilson's PLCIS being found to have microinvasion on her second pathology opinion.
I did the second opinion consultation to try to satisfy my need for more information. It's so hard to get good information about LCIS to help with your decision-making!
My original pathology showed "busy breasts" -- ALH, LCIS (classic, but with at least one focus with more abnormal cells, -- the word "pleomorphic" was used, but I was told it is still considered "classic" LCIS), large central papilloma, radial scar, columnar cell changes. My BS really treated all of this as no big deal -- her initial recommendation was to come back in a year for a clinical breast exam and a mammogram. I had to be assertive and ask about 6 month surveillance, and what about an MRI? At first this surgeon balked about the MRI saying insurance may not cover it, and I had to ask to be put through a risk calculator. She finally got a nurse in the office to do the Tyrer-Cusick calculator with me. When my risk came out about 64% she was surprised and did finally refer me for the MRI. (I have since learned thanks to Lea7777 to take the risk calcualtor with a *huge* grain of salt.) This doctor did push for me to take one of the anti-hormonals, but I have quite a few other health conditions that made me question whether I am an ideal candidate for these drugs, but I couldn't get her to talk to me about side effects, etc. I know she isn't an oncologist (and kept saying that LCIS isn't cancer!) but neither did she offer me a referral to an oncologist to talk about the drug options and my own health conditions. It was for this reason that I self-referred to the "high risk" specialist at my local NCI-designated cancer center.
The new hospital did re-read my pathology and the results were pretty much the same as before with one exception. I initially had a vacuum assisted core needle biopsy before a later surgical excision. The first pathology on the CNB showed ALH and papilloma, and the excision showed more stuff -- including the LCIS and radial scar. The pathology re-read actually classified the ALH found in the CNB as LCIS. This was not a substantially different finding but more of a judgement call as to the degree/extent of the atypia.
What was more important to me though was that the new doctor actually looked over my health records and took some time to evaluate whether she thought I was a good candidate for the AI drugs, and to talk with me about the side effects of the various drugs. She concluded that I was not at this time a good candidate, and even spoke with me about BMX. At this time I am proceeding with 6mo surveillance, including MRIs, but I am still thinking about mastectomy.