Small ILC and Told Probably No Chemoprevention Necessary?

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Girl53
Girl53 Member Posts: 225
edited September 2015 in Stage I Breast Cancer

All: Had visit with MO yesterday (rude, cold, dismissive, condescending....very upsetting experience and will not go back...horrible introduction to this part of BC care). Was so glad to hear that my cancer is very small and apparently low-grade. But I wonder about something she said: that I might not even need chemoprevention. On this site, in books, etc., it seems that Tamoxifen and AIs are now even offered to high-risk women who have never been dx'd with BC. Does this sound right, that I have a small, ER+ BC and wouldn't be given AI? Thanks for any insight.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2015

    You might ask about the oncotype test though the tumor may be too small to sample. A second opinion might be worth it for peace of mind. I'd bet they'd be fine with you taking hormonal therapy if you really want it. Any chance he meant no chemo instead of no hormonal therapy?

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  • Girl53
    Girl53 Member Posts: 225
    edited September 2015

    Farmerlucy: Good to hear from you. Maybe 2mm lesion too small to sample for Oncotype? But had such difficult meeting with doctor that I never got around to asking about Oncotype. She was definitely referring to endocrine therapy and not chemo when she said probably not necessary. Another opinion, absolutely.

    Has been almost two weeks since BC dx, and two months since LCIS dx. I had no idea how stressful and scary this could be in period before treatment plan made. I am "vibrating" with stress. Due to the LCIS and strong-fam-history-but-probably-BRCA-neg status, am trying to decide between rads/AI and CPM. Seeing surgical oncologist for consult/opinion Monday at major breast center (as mentioned on another thread, seeing PS for consult tomorrow, and genetics folks Friday for talk and blood draw).

    Lucy, I can't seem to concentrate on anything. This is taking me back to days when my late husband was struggling with brain tumor. Rationally, I know this is not same thing, but my gut is churning, and I am terrified. It feels good to have a good cry every couple of days to just let it out.

    Scared

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2015

    Girl - I am really really concerned about PTSD for you. You're getting medicinal help right? The anti-anxiety meds were made for times like these. I'd never used them but I needed them. I went into such a tailspin after my nasty surprise. The only safe place for me was sleep. I shook and had panic attacks for months. That was terrible. I was able to meet with a cancer social worker who was a volunteer at my church. We met for about an hour a week. That was the only time I wasn't shaking. If you want I can find a Stephen Minister program near you. It is free, confidential, and the only job of the SM is to listen and provide caring non-judgemental support. There is no obligation whatsoever, they are not preachy, they only want to help.

    I think I read on here that they needed 3 mm of tissue to do the oncotype but you could call Genomic Health and ask. When I went to see my PS after my surprise and told her about it and how scared I was she said "psst" and waved her hand as if to dismiss it. That actually made me feel good. If she thought I'd be OK, I could allow myself to think it. Your onc probably sees many very sad cases, hour after hour, day after day, and her/his way of treating you like it is no big deal might be because he/she feels like it is just that. It totally sucks, but it is just about as good a dx as one can get. I felt so so foolish that I "let" the invasive cancer "catch" me. I knew. I knew. I KNEW!! I was at risk. Duh. It took me so long to get perspective. Everything and then some was done to catch it but as my wonderful, caring, amazing onc said - it was hiding. She also said I very likely saved my own life. And Girl - you very likely saved yours too.

    Sending out huge cyber hugs across the miles. You're gonna be fine. It is going to take a while to accept it. Ride the waves and hang on. You won't always feel like you do now.

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