I’ve just gotten my first prescription of Tamoxifen and it’s unexpectedly very emotional. So much so that I’m feeling a lot of resistance to even taking that first tablet. I tend to read all the labels and expert websites to be prepared, but to be honest, it has really spooked me. I’ve steered clear of any medication beyond off-the-shelf painkillers and cold remedies for years so this feels like a huge deal, almost like I’m betraying some kind of core value I wasn’t fully aware of until now.
I agreed to take Tamoxifen to show willing and because I don’t want my family to go through this again and I’m also scared of cancer recurring distantly.
Although statistically Predict shows a good prognosis with radiotherapy and surgery alone (86% in 10 years), the medical team feel that hormone therapy is very important as a preventative measure.
I feel I need to just grow a pair and take the b******** tablets because people have to take medication all the time for serious illnesses and they just get on with it and live life. However this feels like the end of an era for me.
I’ve been reading this forum for a while and the reality-checking positive stories have been especially helpful, and was wondering if anyone has any perspective on this or has felt the same and how have they dealt with it and coped on hormone therapy. I feel better having just put this out there.
Thanks for reading and hope everyone is doing as ok as possible wherever they are at.
Hello, I think many feel like you do. It’s important to remember everyone reacts differently. I had it for 5 years when I was 36, with very little problems, if fact I didn’t want to come off it. It felt like a comfort blanket. My sister is now taking is as a preventive measure, due to high risk family history. She’s managing as well. I think you just need to try it and chat to your team if you find you have side effects. Best wishes.
@lili2001 I feel the exactly the same I hardly ever went to the doctor before this whole cancer thing and hate taking medication and have a phobia of injections!
Although I’ve now had my mastectomy and just had a sentinel biopsy I don’t know my hormone receptor status yet and I’m also dreading potentially having to go onto one of these drugs for so long. I think it would have to be quite a few percentage points of reduced risk for me to do it. Particularly as I’m self employed with a very physical job.
I feel your anguish
Thanks edp. Yes, many people are ok on it and it’s good to hear that was you and your sister’s experience too. I’m probably still in a bit of denial and wishful thinking, believing that life can return to the way it was before the diagnosis and wanting to do whatever will make that dream more likely rather than deal with reality as is - which may actually end up better than before - who knows! - something to actively aim for at least.
I was offered OS + AI but Tamoxifen for 10 years is the option I’ve chosen for now.
Hi @lili2001 firstly welcome to the forum, I hope you find a lot of support here as you traverse your breast cancer path.
Your concern about taking endocrine therapy is very common so don’t feel awkward about questioning whether to take it or not. For full disclosure, I took Letrozole for 3 out of 5 years but stopped due to certain side effects so thought a viewpoint of someone who did ultimately refuse it, might be of help. I gained agreement from the oncologist because my Predict score for likely effectiveness of endocrine therapy over 10 years was 0.4%, that is 4 women out of 1,000 would see a benefit. Compared to your 14% benefit, that is 14 women out of 100, you can see why the oncologists are keen for you to take it. No-one can make you take it, however, as we have to positively give informed consent to undergoing any treatment. You would not be the first and you certainly won’t be the last to reject it and I would never try to persuade anyone to take it or not to take it, it has to be your decision alone. The biggest downside of not taking it is the worry about recurrence. When I stopped Letrozole, the oncologist said to me that if I should develop a recurrence or spread to bones or organs, to not blame myself as the decision I took was the right one for me at the time. I admit it did give me pause as I didn’t want to end up negatively impacting my life by worrying about recurrence or, worse, spread on a daily basis but I decided to do it anyway. I was 69 at the time and now about to turn 71. So I think you need to have an honest conversation with yourself about the level of fear of recurrence and if, like me, you can get past that, then you have your answer. If you wanted to talk your thought processes through with someone with experience, I recommend give the nurses at BCN a call on 0808 800 6000. They won’t rush you and they won’t try to push you in any direction. I found downloading to them very helpful at the beginning and think you may feel better for having talked things through. Just a suggestion. Good luck going forward, none of this is easy.
Hi wizzer, it’s a lot to take in and decide, isn’t it? And a fair amount of change to get to grips with in a short amount of time, especially if you are considering the impact on your livelihood - that is a big one for me too.
I guess it’s trying to get a sense of what feels like the core treatment and what is more or less ‘optional’ and see what the medical team, the stats and research say. That’s hard with hormone therapy because a person can’t actually feel the benefits of that treatment in the moment - it’s like trying to prove a negative. It becomes more about attitude, which doesn’t feel very scientific ; what cancer recurrence risk you can live with vs what potential side-effects. The former, no one can be certain what that is for you as an individual, and the latter no one knows until they try for themselves like edp says. Maybe one day there will be tests to calculate an individual’s risk but right now a lot is still unknown and we’re all working with broad population statistics with many variables unaccounted for.
Sorry this is a long-winded way of saying, we are doing the best we can with the current info we have, and maybe it’s about not looking too far into the future with the hope of finding certainty, but trying to take it a day at a time, and revisit, revise and adapt as and when - kinda like I imagine you need to do in your work That’s what I keep telling myself anyway.
I hope the way forward becomes clearer once you get your results - the waiting can be the hardest time.
Thanks Tigress, I really appreciate that. And yes, I’m one for talking things through out loud :-D.
From Predict and what the oncologist said, hormone therapy (Tamoxifen) would be critical for 4-6% of people in my situation. I could do all the treatments and statistically the cancer could come back anyway. I guess it’s weighing it all up like what you did.
I tend to be fairly comfortable with hypothetical risk but sometimes wonder if it’s just fool-hardiness so haven’t ruled out OS + AI altogether. The oncologist says it’s something that can be considered a bit later, unlike chemo, which has a window of effectiveness in terms of a preventative measure.
I saw after I pressed the send button that you have decided to give Tamoxifen a go so much of what I said is redundant. What you clearly understand is that, in the end, no-one actually knows, not the medics, not the prognostic tools and certainly not us, what the outcome will be. Taking the drug might stop a recurrence but may not, not taking it equally so. It’s a gamble and decisions are based on how risk averse one is. A wonderful woman, who seems to have disappeared from the forum, once said to me with her usual American directness, the only way you’ll know that you made the right decisions about cancer treatment is when you die of something else. I would still recommend having a chat with the nurses about this or any other thing that pops up going forward, just articulating it out loud to someone who truly gets it can be enough. As for me, a week on Monday I have my fourth yearly mammo check, the first one since giving up Letrozole, so a teeny-tiny bit triggered. Anyway, all the best with Tamoxifen, I hope it is kind to you.
Your post was not redundant to me at all and the surgeon said something similar to the women you mention and it’s true. I hope all goes well for your mammogram check and that you have something nice planned for after it.
I think what also has to be taken into account is the effects of these drugs on other body systems which as I understand it isn’t taken into account with Predict.
It’s very easy to get caught up in the C word and forget about everything else, so I don’t think it’s unreasonable to take time to consider what’s right for you. Afterall, if a treatment means that your risk of heart disease or osteoporosis increases, or just your ability to keep fit, then you have to take that into account too.
I don’t know whether the NHS automatically do this but I would certainly want to be getting as many blood tests and a DEXA scan before treatment to get a baseline to see how it might be affecting me.
Your Predict score does sound like hormone treatment would give you more benefit than a lot of women so it’s probably worth trying, but ultimately life has to be worth living so I think as you say - try it and reassess but don’t beat yourself up if it’s not for you!
I’m not sure why i haven’t got my status yet as other women seem to get theirs sooner
I think it’s only natural to worry about taking tamoxifen, I remember feeling that way myself. I recall taking the first tablet and almost bracing myself for horrible things to happen. I had a couple of days where I struggled to concentrate and a couple of warmer nights but they soon passed and as time moved on and I felt fine I started feeling more confident that it would be okay. I worried again when I had the first brand change and again braced myself but nothing altered. I’ve now had maybe five or six different brands and I’ve not noticed any difference between them. I would never try to convince anyone either way whether to take tamoxifen or not. That is the choice of the person and that person alone. The only thing I would say is to remember many people, myself included, take tamoxifen with no issues at all.
I also noticed your comment about wishful thinking about believing life can return to the way it was before and maybe even better. When I was diagnosed I thought my life would be altered for the worse forever but it hasn’t been. I acknowledge how fortunate I am but, honestly, since cancer life has been great and, yes, even better than before. It isn’t always wishful thinking. x
I can totally empathise as I have also been struggling with the idea of starting Letrozole with all the potential side effects. Having been badly affected by chemo and filstagrim, and since surgery feeling human again, I am wary of something that will make me feel ill again. I will give it a try as I want to avoid recurrence but quality of life is a major consideration for me. At the moment I am not starting any of my adjuvant treatment until after my holiday in August. I am also not sure if I should start the Letrozole before radiotherapy or wait until after. Sorry to hijack your concerns but like you would welcome any positive feedback rather than the negative side effects as I appreciate the fact that people generally only share bad experiences. Hope it goes well for you
Thank you, it’s good to hear the struggles were minimal. And yes, anxious waiting for the side effects to hit after the first tablet - that’s it exactly!
I’m still in active treatment with radiotherapy waiting to be scheduled etc. but I’m starting to get a sense of why the ‘moving on’ part feels so surreal for people. It is a case of accepting and adjusting to a new normal - like Covid except everyone else around me doesn’t have the same imperative. In the last 20 years, there’s been a lot of adapting in my life but much of it has originated in conscious choices in one way or another. This feels different. I’m so pleased to know that it’s possible for life to be better after cancer.
Something that helped me with it all is remembering that just because you start, you can also stop or adjust the treatment at any time, it’s an ongoing conversation with your doctor. Personally I started zoladex and tamoxifen (38 when diagnosed) after surgery and RT. A year later I have decided to stop the zoladex, it’s been super challenging and the Dr agreed that the benefit vs impact on quality of life is off. Will switch to just tamoxifen and hope that things get easier, will reassess with the Dr again in 6 months. I think it has helped me to think of it as an evolving conversation, rather than just a treatment you are on until the end date many years in the future. Good luck with it
i read your message and it felt like i could have written it myself. i let my tamoxifen prescription sit in the chemist for 3 weeks as i really didnt want to take it. i was told it was a 2% benefit for me which didnt feel much but then the oncologist told me it was a very strong recommendation that i would benefit as my cancer is hormone receptive and 8/8. i decided to give it 3 months and then decide despite being told to be on it for 10 years! . i felt that i could cope with any side effects for 3 months and then if i decided it wasn’t for me i had at least tried it (rather than not starting it completely). it feels like such a different thing - surgery is oddly for me easier to cope with - but i feel this impacts everything. so far ive been on it for 2 weeks and am having numerous hot episodes and then chills a day -every 90 mins or so. i’m not working at the moment so i can cope with it but im worried about what it will be like when i go back to work. i’m hoping they will calm down over time. i take it at night. i have spoken to someone people who are absolutely fine on jt and others who are not. so i’m hoping im in the latter group once it settles down. i hope you are too.
Hi, just wanted to add my recent experience. I started Tamoxifen Feb 2026, then Zoladezc injections. Honestly, it’s not been that bad. Hot flushes only with the heat wave and manageable with a small fan. Oncologist has advised I switch now from Tamoxifen to Exesmestane-I’m apprehensive to change as have been getting on well with the current regime. But without Exesmestane I wouldn’t qualify to go on Ribociclib - which is the next drug on the plan, so will give it a go and see. Hope you get on with Tamoxifen too.
I am in the same situation and share your feelings and fear. For me is also frustrating to take a pill each day for the next 5 years, same as old people do. And I am 44 years old. I’ve started tamoxifen on the 20th of July, took first pill at 9 pm and couldn’t sleep all night because of the stress and fear. Next pill I’ve took it on the 22nd at 9 am during breakfast and so far so good, no side effects. I exercise daily and I guess it helps managing the side effects. Hope it won’t change in the following months. Good luck to all!
I have started taking tamoxifen today and also share your worries. This has been the one part of the treatment plan that has worried me the most. It would be helpful if anyone could share what they have done to reduce the side effects so that we can have some tools to help if we need them xx
I have just had a mastectomy and have been given Letrozole for 10 yrs, been taking it for 9 wks no side effects yet. Feel it’s better to be safe than sorry. Good luck hope things work out.
@ellenf I may be wrong, but I’m convinced the reason I don’t have any side effects is because of the amount of exercise I do and because I don’t drink alcohol. I also, rightly or wrongly, don’t attribute certain things to the medication. For example, I ache a bit when I wake up sometimes and I can occasionally struggle to find the right word, but I am 48, do loads of exercise and naturally reaching menopause so I kind of think these things would be happening anyway with or without tamoxifen. x
I hardly ever went to the doctor before this whole cancer thing and hate taking medication and have a phobia of injections!
; what cancer recurrence risk you can live with vs what potential side-effects. The former, no one can be certain what that is for you as an individual, and the latter no one knows until they try for themselves like edp says. Maybe one day there will be tests to calculate an individual’s risk but right now a lot is still unknown and we’re all working with broad population statistics with many variables unaccounted for.
