Hi All, So far I have had my lump removed, and my lymph nodes - only one was affected, so now I am having chemo and will be due 3 weeks of radiotherapy after that - then apparently as my tumor was hormone fed I will be on tamoxifen for 5 years. I am 34 and having read up on the tablets I have to say I don’t want to go through 5 years of side effects and feeling crap - I don’t know what to do. Has anone refused this part of the treatment and if so what were you advised or were you given any alernatives?
I am going to talk to my oncologist but any info / help would be appreciated.
Everyone is different and I managed a year and a half on tamoxifen before giving up. I now less than 2 years after diagnosis have a recurrence. I was 38 when first diagnosed. Give it a try would be my advice loads and loads of people tolerate it really well and it ould give you that protection you really need as you are so very very young. If you really hate it then think about having your ovaries removed and trying the AI’s. I have been through the menopause once and am now doing it again on chemo and its not anywhere near as bad as I thought
everybody is different. The statistics are that its about 10% that get the more common side effects. it might not seem that way from reading the threads but I bet there are people who are not leaving posts saying they are fine because either they dont want to sound smug, or because they are not having problems they are not on this site anymore. So it must be worth giving it a try and seeing how it affects you.
you could ask your team what percentage benefit you are gettting from the tomaxifan , everybodies statistics are different, you cannot go by the figures quoted on the websites. If its a huge life saver in your case you might decide the side effects are not too bad and worth it. If its only marginal and you are suffering you could discuss changing to something else.
I started mine today, I have been trying to find out when the side effect kick in, does anyon know??
Interesting topic - and one I discussed with my GP only last week. I was amazed when she told me that she stopped taking Tamoxifen after 18 months because of the side effects.
However, speaking personally I will accept and continue whatever treatment is offered to me unless it left me with a quality of life that I didn’t consider good enough when balanced against benefits.
Just to agree with OAL. People don’t post on here to say that things are going well for them because it can sound smug or insensitive, plus actually they just might not even read the threads that don’t apply. (Me I’m just a nosey cow who reads all sorts of stuff)
I am 7 months into tamoxifen and apart from the hot flushes and some stiffness/coccyx pain have been very fortunate with side effects. For me it is my best chance of avoiding recurrence (high grade cancer etc etc) so I am willing to put up with the effects it has… I can’t recall the figures my onc gave me but at the time it was a no-brainer. I have met people who’ve tried it and found the side effects too awful and then their oncs have found other options for them.
Have a good chat to your onc, explain your concerns and maybe give it go if after that you feel the benefits are worth the hassle. It is entirely your decision and whatever you choose will be right for you.
Hi. I’ve been on tamoxifen for 3 months and am fine, apart from the odd hot flush. I have 100% oestrogen pos cancer, so tamoxifen gold standard for me. Considering the alternative, i’d rather have hot flushes than pushing up daisies! Xx
Hi Zoe
I’m going to risk sounding smug!
I have been taking Tamoxifen since January this year and haven’t really had any side effects apart from less periods and less migraines. No sweats and no hot flushes, the only bad SE I had was a few spots on my face and chest in the first few months.
I cannot be the only one who has got of so lightly!
E x
I had 5 years Tamoxifen and apart from weight gain of over a stone(lost since finishing Tamoxifen)I did not have any other side effects.
I am now on Femara and whilst I have not had the aches and pains it seems I now have Burning Mouth Syndrome(just waiting for results of bloodtests to see if anything else shows up) which I cannot say is because of Femara but seems likely as the symptons started 6 months after I started Femara. It seems that 1 out of 3 postmenopausal women get BMS, not heard of it previously.
Anyway I thought that as it would be just 3 years of Femara I would try and put up with it, I have another 8 months to go, but my Onc would like me stay on it for a total of 5 years and I like many others don’t know if I want to put up with this for another 2+years.
Very difficult decision to give the drugs up I’m afraid.
I agree with Revcat, people don’t tend to post on here to say things are going well as it may sound insenstive. I started Tamoxifen in June and have had no side effects, apart from feeling warm, no hot flushes, just generally warmer. Not everyone gets side effects. Let your onc know your concerns.
I was on Tam for 4 months before side effects (apart from hot flushes) kicked in. I have had various side effects which seem to come and go and I am now 9months down the line.
What are the alternatives that some of the ladies mention, are we talking about a change of brand and/or inhibitors. Do side effects increase when using inhibitors as they suppress more eostrogen?
Thank you all for your comments, I really appreciate your time. I will discuss it with my oncologist & more than likely give it a go I guess treatment is getting me down a bit and the length of time and possible side effects are too much to think about sometimes!
For me I find my Onc a bit annoying as he doesn’t really want to know about side effects. Luckily with Tamoxifen I was okay and whilst I am not a moaner I wanted him to take my concerns seriously re Femara. So I was a bit shocked when he said that he wanted me to stay on it for 5 years.
I had a look at the NICE website yesterday and it said nothing or I missed it that AIs are recommended for 5 years after 5 years Tamoxifen.
But a question I have to ask myself is do I give up the safety net of Femara and risk the cancer coming back and at this moment I can’t.
Zoe I wouldn’t write something off without even trying it - you might be one of the lucky ones with minimal SE’s. As others have said, those who are getting on okay tend to be less vocal about it, so it is easy to forgot there are lots of people getting on fine. I have been on tamox since Dec and found it totally bearable. And I do think, even if the SE’s were much worse I believe most studies suggest that the benefits of tamox far outweigh any potential negatives.
I can understand where you are coming from, I was very scared before starting tamox, I think it was the fear of starting something that was going to go on for five years! It seemed like forever and the thought was very daunting but it really is a wonder drug. Give it a try if it is that bad you could always stop (of course I would recommend you talk to your docs before doing so) but you really might be fine. I certainly wouldn’t refuse it without even giving it a go. Good luck! xxx
