Hi
I am due to see an oncologist tomorrow about taking tamoxifen, having read the side effects I really really dont want to take it. I know I should do anything preventative but I am seriously overweight and am trying to lose weight so the last thing I want is to put more on, not to mention the hot flushes and sweats!
I had DCIS so wasnt an invasive cancer so I am seriously thinking about not having any and taking my chance.
What do others think?
Thanks Jan
Hi Jan,
While you are waiting for replies, I have put for you below the link to BCC’s publication for Tamoxifen and hope you find it helpful.
www2.breastcancercare.org.uk/publications/treatment-side-effects/tamoxifen-bcc20
Take care,
Jo, Moderator
Hi Jan,
I had Tamoxifen and the hot flushes weren’t too bad for me, and they get less after a while. I had some problems with swollen legs but that turned out to be long-term effects of chemo (Taxol). So I don’t think you can know what the side effects are for you till you try it. I do understand about the weight problem. I was relieved to get off Tamoxifen, followed by Arimidex and Exemestane, after five years.
I think on average Tamoxifen reduces the incidence of recurrence by something like 40% (i.e. if your risk of recurrence is 10% it becomes 6%) - this is very unscientifically explained by me. However, no one can know if you as an individual need it. You should get the oncologist to set out the percentages if he can.
Some people apparently actually lose weight on Tamoxifen, but I wasn’t one of them.
Some people take Tamoxifen with little or no side-effects (you just won’t often read about such things on forums). Why not try it and if you get unbearable side-effects you could then make the decision to discontinue? At the end of the day it’s your body, your choice - if I were you I’d just make sure it’s an informed choice.
All the best, whatever you decide.
I had dcis in 2006 and had a lumpectomy and radiotherapy. Tamoxifen was not prescribed. In 2012 I had a 20mm invasive cancer in the other breast.
I have had another lumpectomy, chemo, radiotherapy, herceptin and have been taking Tamoxifen for over a year.
If I could turn the clock back would I have taken Tamoxifen if offered…probably not. My understanding was that dcis could not spread so I doubt i would have taken a carcinogenic tablet.
That said, I wouldn’t wish invasive breast cancer on anyone. Aside from the physical side effects of treatment it can have a long term mental impact-the constant worry about recurrance/spread.
I think this is one to mull over with your breast team looking at the statistical benefits for your own personal case.
Good luck.
Maire, you say “My understanding was that dcis could not spread”. Is this still your understanding?
My understanding is the exact opposite. I thought that IDC (and indeed secondary breast cancer) can develop from DCIS. Quote from BCC booklet on DCIS:
"If DCIS is left untreated, the cancer cells may develop the ability
to spread outside the ducts into the surrounding breast tissue
and possibly to other parts of the body."
Perhaps I’m not fully up to speed on DCIS. When I was diagnosed i was told it was confined to the breast and had not developed the ability to spread. At the time there were many media stories suggesting that it was being over treated and that many women had dcis which did not spread. But maybe my information is out of date. I was certainly glad to have the area removed and radiotherapy. However I definitely wouldn’t have taken Tamoxifen-it wasn’t offered anyway. But that is just my own opinion. I am currently struggling with this drug.
Just to put your mind at ease i have been taking tamoxifen for about 10 wks now and was very worried like you about the same issues but haven,t encountered them. i have eaten very healthily and infact have lost a few pounds! no hot sweats or flushes. my opinion is that these proffessionals know what they are on about and taking their advice is key . dont think they would reccommend if not neccessary. my only glitch is that i do get tearful quite often and i,m not sure if thats a side effect of the tablets or whether its just from having a mastectomy and still coming to terms with it. any advice from anyone on that side of things would be a help to me. hope i have put your mind at ease about taking the tamoxifen.
Hi Cazbar,
Thank you for the encouraging comments about Tamoxifen. I will be switching to it next year and it’s good to know you’re managing without too many side-effects.
I can vouch for the fact that coming to terms with new body image does take time. There was a thread about it recently and the BCC moderator posted a link to an interesting article which helped me.
forum.breastcancercare.org.uk/t5/Coping-with-fear-and-anxiety/Finding-the-new-you/td-p/859731
I have been taking tamoxifen for almost 4 years now. I was marginal for taking it, as I had tubular bc which is relatively unlikely to spread so BS suggested that I take it and we would review after a year if I had any significant side effects. Oncologist was very keen for me to take it, I hadn’t had chemo so this was the only systemic treatment I would have which might mop up or keep at bay any stray cells or keep at bay possible contralateral bc (other breast).
Just to say that I have had very few side effects - occasional hot flushes but these seem to come and go - and otherwise no weight gain, lack of libido or any of the other things referred to.
Everyone has to make their own decision on what to do, but I am extremely glad that I took tamoxifen and would happily now take it for 10 years if it were suggested.
Some people do have a hard time with tamoxifen but you probably hear less from those who take it without any problems.
I know this is long after you had to make your decision about Tamoxofen but the thoughts might be useful.
I had the ‘works’ in Nov/Dec 2012 through until end Feb 2013. Was taken off HRT abruptly and given Tam. Had the worst possible side effects from both stopping HRT and taking Tam. After further discussion with Onc about quality of life vs the possibility of returning cancer decided to stop the Tam and in fact eventually, after suffering for months went back on HRT to control the symptoms of sweating, flushes that happened every hour, day and night. It was a very difficult decision but I made it with support from the Onc based on the fact there had been no point saving my life in order that I could live in a thoroughly miserable way for the rest of my life, however loong that might be. They couldn’t tell me if the flushes and sweats would ever stop as it seems my ‘heating mechanism’ has been damaged in some way from the abrupt HRT cessation. For the last year I have taken HRT which is only just keeping the devil under control, while hoping the cancer will not return. I’m 3 years since surgery now which is great and about to take part in a new research project. I hope I can help in some way so that others can have a better, less invasive and less intrusive outcome.
When we start down this road, we all do what we do initially out of fear, pure and simple. You do what you think is best at the time and once the urgency of it all dies down a little, sometimes you have to step back and rethink/review your initial thoughts and opinions, and that’s fine The docs admit they can’t guarantee that if you do everything they advise that cancer will stay away forever and again, they also admit if you DON’T do everything they advise they can’t say for sure it will come back. They can only give you their best guess. It’s all a balance between doing what you feel is best for you while carefully balancing it all up and trying to have a reasonable quality of life. For myself, however selfish that may seem, I’d rather have whatever time I have being happy, comfortable and able to live as vest I can and want with my family rather than take all the drugs that actually caused me pain and problems and made my life and the lives of my family totally miserable. It took me a while to make that decision and to be happy with it but I feel very much better for it. If cancer comes back then we’ll deal with it again. I can’t live my life in fear and I can be of no help to anyone else if I’m in constant fear.
Good thoughts to all of you out there who are undecided about your treatment. Stay calm and the answer will come to you. Trust your instinct and don’t fear life.