Are there any statistics for BC survival or non recurrence for ladies who chose not to take Tamoxifen. I have decided not to take it as I do not feel I have enough facts about it & my anxiety levels are through the roof. I am 76.
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Hi balchik
There is an online tool called Predict which anyone can access for free whereby your own specific cancer data is fed into this algorithm along with any treatments you have had / will have. This then produces your particular percentge of likely survival, after 5, 10 and 15 years (based on the most recent of women’s outcomes with similar diagnosis / treatment to yours). You can change the various elements you enter (eg the different adjuvant therapies you may / may not want included) to recalculate the result, so that you could compare your results with using Tamoxifen to without.
I recommend you ask to be guided (or ask for it be done for you) by your consultant or breast care nurse. This tool was recently updated, so be sure it is the latest version (Spring 2024) you use as it’s more accurate (and optimistic, since treatments/outcomes have obviously improved over the years) https://breast.v3.predict.cam/ (Admittedly, I haven’t gone back to use this newer version myself yet, so I hope my description of its use is still relevant.)
With regard to the likelihood of recurrence, a different issue, I think you’d need a discussion with the oncologist from your MDT about your particular circumstances.
In terms of drugs in general, you can read about each - what they’re used for and their side effects / risks - on the NICE website. If you go to their front page NICE.org.uk , scroll to the very bottom of that page and and select British National Formulary (BNF) from the left hand column of options, it will take you to here https://bnf.nice.org.uk You can then search for drugs alphabetically.
It’s disappointing (yet again) to hear that a breast cancer patient has been left uncertain or not fully informed about the benefits, side effects, risks and likely outcomes of all treatments.
This needs to change !!! (to address the psychological wellbeing of us all; equally important).
Is anybody out there in the cancer care profession listening ?!
Good luck, balchik, with getting the information you need to make the choice that sits right with you.
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Hi @MistyK just to let you know that the most recent version, v3.0, which you referenced hasn’t yet been verified by the panel of oncologists (can’t remember the name of the body) until the results have been validated against a greater number of international research programs’ datasets. So the NHS will continue to use v2.2 for the foreseeable. But agree it’s the closest anyone is going to get to a statistic based on age and histology.
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Oops. Sorry, peeps. I just assumed it was up and running since it said it was ‘launched’.
So, can we use it but not trust it, then?
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Hello, I am wondering why, at 76, you’ve been offered Tamoxifen. This drug is usually offered to pre- menopausal women. There are a group of AI drugs for post-menopausal women. Letrozole seems to be the most commonly used. Perhaps it is because of risk of osteoporosis? Either way, you should certainly be asking for rationale and an opportunity to talk through your risks with /without any of the drug options. And they should take you through the Predict tool. I think the NHS is in such a state now that they are failing on some of their basic responsibilities. You really must ASK!!! No wonder you are scared if you haven’t had the information. Good luck x
Personally @MistyK I would expect it to be as trustworthy as any other version and I should think that the upturn in favourable individual outcomes IS due to better treatment options over the years. v2.2, which the NHS use, is based on data to 2003 whereas v3.0 is based on data up to 2017. As we know, the oncologists job is to stop, as far as they can, cancer recurrence, particularly metastatic recurrence, so it is understandable that they would want as much evidence as they can get that the predictions made by the tool are as accurate as possible because so many people’s individually predicted outcomes are vastly improved in v3.0 it could lead to thousands of people abandoning certain treatment paths on which oncology relies.
Hi, Yes, I was prescribed Tamoxifen because I already have bad rheumatism & osteoarthritis. I really don’t feel I’ve had much help regarding the medication, so at the moment I’m still choosing not to take it.
Sure; I get they don’t want people relying on possibly over-ambitious predictions - until figures are corroborated - thereby mistakenly opting out of medication. Thanks, Tigress.
I am the same age as you and I had breast cancer surgery May 2025. I see your post is 2024.
I am really anxious about taking Tamoxifen and have tried talking to my Consultant but he’s not listening. I think like you I’m not going to take it but can you tell me how you are please.
When you hear all the negatives with joint pain, etc., and other symptoms it completely puts me off. I have just undergone a total hip replacement and the pain I have had for two years before the operation has been off the scale so to have more joint pain anywhere in my body terrifies me.
Anyway, if you see this reply please let me know your thoughts.
Thank you.
Hi Toots1
I think it is a massive decision deciding whether or not to take Tamoxifen & I don’t think you can be influenced by other people, it has to be your own decision. I made the decision not to take it because of my age mainly, 76 at the time and because I already have osteoarthritis, had a hip replacement & felt I had suffered enough pain. I had my first mammogram in April 2025 & it was clear & a huge relief, so am due my second one this April. At the moment I am healthy & fit, I keep my weight down & do some exercise, I’m not in pain other than what I consider normal for my age. I try not to let the thought of a cancer recurrence rule my life, but it is always at the back of my mind, if it happens I will have to deal with it. I have had nearly 2 years so far of being fit & healthy since my operation & radiotherapy & feel very lucky. I have never liked taking pills, so could not bring myself to take Tamoxifen every day for years, thinking of the side effects & what it might be doing to my body apart from maybe holding off the cancer. Had I been a lot younger my decision would probably have been different. You have to take into consideration the percentage risk personally of a recurrence, mine only gave me an extra 3%, so I didn’t think any side effects were worth it. I hope you post again after you have made your decision. Good luck. 