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!
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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
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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.
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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
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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.0 -
thank you. I know what the risk is WITH the tamoxifen, but what is it WITHOUT. Having a hard time with the tamoxifen
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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
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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.
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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.
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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
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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.
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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 ?
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