I realize many will censure my decision, but I only made it 4 months on the tamoxifen. The leg pain and fatigue were too much for me. Now my new friend, the dark cloud of fear, is hovering a bit closer.
I am doing what I can - off sugar, lots of leafy greens in my diet, trying to reduce stress, taking vitamin D etc…
However, my question to you survivors is, has anyone else out there also made this decision? And, if so, what homeopathic alternatives are you using? I’ve been reading about D I M and I3C, but haven’t talked to anyone using these supplements, or any other, for estrogen receptive positive breat cancer prevention. I’m really looking for some advice from like minded women.
Hi Christine, I have been on and off hormone therapy since January 2011. I started Tamoxifen for one one last go 5wks ago,but decided last Sunday that I’d had enough of the side effects and couldn’t imagine being on them for years. I phoned my oncologist’s secretary yesterday to cancel my appointment to see her on 4th November and to let her know that I stopped taking the Tamoxifen yesterday,but I was told it wasn’t really wise to stop treatment and to keep my appointment. when I first took it in 2011 , I lasted 4mths and because of joint pain and fatigue,I came off them for a mth and felt great. Went back on them and couldn’t do any exercise whatsoever. Stopped taking them for a yr and felt fantastic,but was told to try Anastrazole instead. The joint pain was worse and I developed carpal tunnel syndrome in both wrists and nodules on my knuckles. Came off them and I as I said decided to give the Tamoxifen a final go. In just 5wks I have had enough. The list of side effects is endless and like you I’m scared as to where I go from here to ensure I do my utmost to stop a recurrence. I’m very health conscious,eat pretty well and go to the gym and walk my dog,but will this be enough to stop BC coming back. Any advice welcome
I don’t know if this will help both of you, as it is not really advice, more my experience.
I was dx in Nov 2010 and had the full works, chemo, surgery, radio, herceptin for a year and was then expected to take Tamoxifen.
I tried on and off for a few months, but within days of taking it I felt awful and it was really impacting on my daily life. So after around 6 months I stopped. I didn’t tell my onc as by then I was only seeing her once a year, I just stopped ordering my repeat prescription.
That was in 2011. Yes, I know I have increased my risk slightly by not taking it, but on the other hand I had every other treatment, more than some people have, and I am happy with my decision. And I think that is main thing, you have to be happy with your decision, not what someone else says.
Yes the cancer may come back, but there again, I could take Tamoxifen for 10 years and then the cancer could come back after another 2, there are no cast iron guarantees.
I don’t do anything special or take anything special other than vit D, but that was because I was diagnosed with a vit d deficiency. I still eat all foods in a balanced way, and I still have a drink when I want one. For me it is quality of life over quantity. I don’t see the point of going through all that treatment to be miserable.
Like I say I think the main thing is, YOU have to be happy with the decision. My husband just said that it was up to me, we are both very pragmatic and well aware that you can do everything they tell you and it can still come back, there are no guarantees. He has never given me a hard time about it.
I was 42 when I was dx. I have never told my onc or surgeon that I stopped taking Tamoxifen, I see her and my surgeon once a year, and when they ask how I am getting on I just smile now and say, yeah fine, everything’s fine and then just go on my way for another year.
I have stopped taking it as well, the body couldn’t cope I too have not told anyone Im just bustling along living a very full life which I could not even imagine when taking the dreaded Tam.
i know everyone is different but i am at peace with my decision, i lost a very dear friend who had everything thrown at her, she religiously took all her meds but sadly lost her fight to this horrific diease still very nervous about first check up in December though fingers crossed.
best wishes and good luck with any decision you make.
I have been taking Tamoxifen for just over a year but just can’t take it anymore! I’ve looked at the stats and would like to continue taking it but am just overwhelmed by how awful I feel and the constant worry about whether it’s tamoxifen side effects or cancer!