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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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?
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@ismacurler and @needs.a.nap For me, Tamoxifen was a miracle drug. Five years after the MBC dx ( during which the only treatment was bandages and opioids), I found a great doctor and started western-tradition hormonal therapy last year, that was designed in tandem with eastern-tradition therapies. My open wound started flattening out and reducing in size. I didn't make images of the interior of my body, but I assume the rx acted there similarly, which was miraculous to me. Then, the multiple side effects were keeping me bedridden - pains in knees, throbbing, loss of balance, low energy, migraine headaches, fatigue - and I was then barely self-sufficient before the side effects. An eye exam a few weeks ago discovered the beginning stages of a cornea, that I believe is another side effect of either Tamoxifen or Letrozole.
So, I briefly took a break from the side effects - a wrong decision for my body since the open wound furiously restarted its growth and became resistant. A switch to Letrozole had kept the growth almost in check, but not for the last two weeks.
I and the doctor both wish I hadn't paused the use of the Tamoxifen. Yes, each body is different, but I share these experiences since continuing the Tamoxifen and being bedridden until I adapted would have definately been preferable to a regrowing open wound, and to whatever else the MBC is now doing inside. May this be of help!
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I guess that shows that everyone is different. In my case the risk of recurrence is very low according to all the calculators and it is estimated that the endocrine therapy gives me 0.5% benefit. I restarted with anastrazole 2 days ago because I feel I have to try. I probably would feel very different with a different type or stage of cancer. Best wishes.
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Thank you @ismacurler ! Best wishes to you as well, and good luck!
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