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Risk of discontinuing tamoxifen

I have read several reports from others that noted that their medical oncologist gave them a percentage benefit from tamoxifen (or AI’s). When I asked my MO she would not provide me with this type of information. Can anyone tell me where this type of information would come from? I want to be prepared for my next appointment as I am really trying to get a grasp on the absolute benefit to me from this medication. Help please!

Comments

  • moderators
    moderators Posts: 8,699

    Hi @ismacurler,

    We're sure others will be by shortly to weigh in, but in the meantime we wanted to share this article with you for some important information to consider:

    We hope this helps!

    —The Mods

  • maggie15
    maggie15 Member Posts: 1,421
    edited November 6

    Hi @ismacurler , My MO gave me this information but not all doctors work the same way. There is a calculator called Breast Cancer Predict where you can enter information about your tumor and see the effect of hormone therapy or not on overall survival as a statistical percentage. It may not be as accurate as personalized information but it can give you some idea of how much difference completing hormone therapy might make. Hope this helps.

    https://breast.predict.cam/tool

  • ismacurler
    ismacurler Member Posts: 18

    thank you, I have read everything I can access, but what I want are facts related to my cancer and my status. That seems to be in short supply

  • needs.a.nap
    needs.a.nap Member Posts: 221

    Hello @ismacurler. The percentage was at the top of my Oncotype report … my score was 16 and it has a box in the center that reads Distant Recurrence Risk at 9 Years - with AI or TAM alone =4%.
    My MO used another risk calculator called RSClin tool and I believe that gave me a slightly higher 5% risk with taking hormone therapy.

  • ismacurler
    ismacurler Member Posts: 18

    thank you. I know what the risk is WITH the tamoxifen, but what is it WITHOUT. Having a hard time with the tamoxifen


  • maggie15
    maggie15 Member Posts: 1,421
    edited November 7

    if you know the recurrence risk with tamoxifen you can divide that score by .6 to find the risk without. For needs.a.nap that would be 4 / .6 = 6.7 (rounded). For an AI divide by .5 which would be 6 / .5 = 8. This assumes tamoxifen reduces the risk of recurrence by 40% and an AI reduces it by 50%.

    This fits with needs.a.nap ‘s MO’s calculator since if her risk of recurrence is 5 with tamoxifen, it would be 5 / .6 = 8.3 without, closer to the 8 calculated using the AI risk reduction. Since the numbers are statistical 6.7, 8 and 8.3 are pretty close.

    The algebra: if x is the risk of recurrence, T is the risk using tamoxifen,

    x - .4x = T

    .6x = T

    x = T / .6

  • ismacurler
    ismacurler Member Posts: 18

    thank you sooo much! I had done a similar calculation in my head but this confirms what I was thinking. It makes me wonder why the MO wasn’t willing to be so straightforward. My oncotype score was very low…6… with a risk of recurrence given as 3%. It kind of puts a different perspective on things.

  • maggie15
    maggie15 Member Posts: 1,421

    The RSClin tool that needs.a.nap mentioned is part of the Oncotype DX website requiring a physician login. My MO was quite adept at using it to get information not on the patient report but he was a researcher and interested in that sort of thing. It’s helpful to have those stats when HT is causing problems.

  • ismacurler
    ismacurler Member Posts: 18

    those are the stats that I feel I need to make an informed decision. Unfortunately I seem to have some difficulty getting that info from my MO

  • needs.a.nap
    needs.a.nap Member Posts: 221

    Excellent question @ismacurler and thank you for spurring this thread. I’m really sorry you are struggling with Tamoxifen! I’ve had a difficult time with Tamoxifen myself and often question if it’s worth it.

    Thanks @maggie15!! Your explanations are very helpful.

  • ismacurler
    ismacurler Member Posts: 18

    I am also having challenges getting information on side effects, specifically for post menopausal women on tamoxifen. I know that the majority of women use AI’s , but in my case but I already had joint issues and a recent TKR prior to BC dx, along with a low risk of recurrence , so Tamoxifen was recommended and I agreed with that. All I read about are younger women and I wonder if this experience is different ?

  • ismacurler
    ismacurler Member Posts: 18

    so my oncologist told me to pause the tamoxifen, go on anride

    Resent and we will revisit in 3 months. Has anyone made the change from tamoxifen to an AI and not experienced side effects?