Hello All
I was diagnosed with dcis and a small tumour in my left breast 3 years ago . I had a mastectomy ,chemo and herceptin .I was put on Tamoxifen last year . I decided to come off it due to bone pain and weight gain .I have not told my consultant as I only see him once in a while . I know my cancer could return as its hormone related . I have been off tamoxifen for the last two months. My periods have not returned and I feel my risks are quiet low . I’m not a doctor but I do feel I have made the right choice . Has anyone else stopped treatment and if so do you still have the all clear ?
Best Wishes
Sandra
Hullo Sandra
Sorry to read that you have given up your tamoxifen due to side effects.
My cancer and treatment similar so I thought it may help if I reply. I was diagnosed about 20 months ago with dcis and two small tumours. My treatment same as yours, mastectomy, chemo, herceptin and tamoxifen.
I was ok on the tamoxifen after some initial nausia. Some bone and muscle aching and tiredness. However I think part of that was a legacy of the chemo which I still think is affecting me to some extent. After 4 or 5 months I got a discharge on the tamoxifen so it was stopped and I am now on Exemestane. (Investigations showed nothing malignant in my womb).
In case you don’t know Exemestane is one of the AI drugs that can be prescribed instead of tamoxifen (and often is prescribed to follow on from tamoxifen). Of the 3 main AI drugs (from what I have read) it causes the least bone/muscle pain. Now I do get some bone and muscle aching but it is not acute and definitely bearable and I rarely take any paracetemol or ibruprofin for it.
It is very personal how much we each feel and can put up with on the various drugs – and I do feel for you. I feel a bit worried for you that you have stopped your tamoxifen without talking it through with your oncologist or breast care nurse. I think tamoxifen is considered to reduce the chances of the cancer recurring by quite a few % so do check that out too. Also you might be able to get better pain relief for the aches and pains you have been suffering from.
All the very best and do let me know how you get on. x
Orangpeko
Sandra,
Like you I was dx 3 years ago. I had chemo first to reduce the size of tumour, WLE, followed by radio and 12 months Herceptin. I started on Tamoxifen whilst on Herceptin but had such bad side effects my onc told me to stop until the Herceptin was finished. I have tried on a couple of occasions since to take it but the side effects were so horrendous I too stopped altogether.
I do have days where I wonder have I done the right thing, will it come back etc. BUT for me the side effects were affecting my life too much, I was not performing at work, I was so ill all the time. For me it was the right thing to stop taking it.
I too have not told my onc as I now only see her every 6 months and she just asks how I am and I tell her I am fine, which I am. And I also know that if I tell her I have stopped it will start a row and I really don’t want to go down that line.
At the end of the day you can take it for 10 years and then in the 11th it comes back. Life is a lottery, but the main thing is being happy with your decision. If you are happy with your decision then no-one has the right to say whether you are doing right or wrong. Everyone is different, some people decline chemo, some people don’t have radiotherapy for a whole host of reasons.
You might want to try the AI route if you are past the menopause - that isn’t an option for me as even though my periods didn’t return after chemo, technically I am still not post-menopause.
Sam
Sandra,
Sorry to hear that you had problems with Tamoxifen. I had Tamoxifen for 5 years, was okayish apart from weight gain which started to go once I finished and went on to Letrozole which I have had problems with but now in last year of 5 years.
I was a bit laid back(best way to describe it) with Letrozole. Started getting problems 6 months after starting it and after 2 years my Onc finally agreed to a break to see if it was the cause of my problems, had problems with dry burning mouth which has been diagnosed as burning mouth syndrome, apparently one in three postmenopausal women get it due to lack of Oestrogen(drug working then). Anyway had a break of 8 weeks, mouth improved but I agreed to go back on Letrozole with medication for my mouth which don’t really work 100% but I have persevered.
Anyway I then started giving myself little breaks from Letrozole, my GP agreed and last Christmas I thought “s** it” I 'll take 3 months off and then I started getting aches and pains so much that I was signed off work. Told Onc about what I had done and he sent me for full body MRI which he thought would be clear but wanted to make sure, Well those weeks were the most worrying I have ever had, thinking to myself “what have I done” From that day I restarted Letrozole and I will take that little pill every single day until my years are up next April. The scan came back clear, thankfully.
My message to you would be to go back to see your Onc and talk over the options there may be other drugs you can try. My GP is very helpful so it might be worth speaking to your GP and I am on Ibruprofen for the aches and pains and Omeprazole as Ibruprofen is not good on the stomach.
Hazel
hi sandra
i was prescribed anastrazole 20 months ago . i refused to take it,i told my oncologist who wasnt pleased but said she couldnt force me! i am 67 and didnt want the side effects as i am otherwise very healthy.so far so good. i did have ibc.it is a personal choice.my family dont understand.i now wish i hadnt told anyone!
ginette65
Hi Sandra, just reading your post, and whilst I am triple negative so have to go down the chemo / rads road as the hormone drugs won’t help me. I can understand how you must feel as at times the chemo totally wipes me out, also it is your decision what you do or don’t take. I do think though that you should inform your oncologist as they base your treatment plan on what they are prescribing you and you should at least let them know. There are always alternatives and its unlikely that they would want you to suffer so badly for so long. Just phone the oncology secretary and explain and you will get an appointment. Good luck xx