Please Share Your Opinion? I'm Going to Reject Hormonal Therapy

Hi Deniz,

I can relate to your concerns about tamoxifen, I had the same. I'm 32 and was diagnosed at 31 with triple positive IDC, went through chemo, surgery, radiation and then it was time to start tamoxifen. I wasn't keen on starting it but I had to give it a fair shot. I tried it and I was having some side effects that were manageable and others like anxiety that were not too manageable. Through discussions with my MO we agreed to cut the dose in half to see if that would help. Some side effects went away but the anxiety remained. My anxiety got better when I went off it.

I also tried Zoladex to shut down my ovaries, again, I had the anxiety come back. My MO is very much a quality of life kinda guy and through a really long discussion we decided that we would try to see if the anxiety would go away again without the Zoladex first before prescribing anti-anxiety meds. Given my particulars, he's left the decision up to me as to whether or not I continue with any form of hormonal therapy. I think my body is just very sensitive to hormonal fluctuations.

You are more likely to hear about people who have side effects on sites like this since that's what people are talking about but I have seen many women to take tamoxifen and are able to manage the side effects. Unfortunately it's one of those situations where you won't know the side effects unless you try.

Best of luck with your decision.

That's a tough decision - with such a low ER% I can see why you might not want to take it, but a couple things to consider.

From what I've heard, typically, the younger and farther away from menopause you are, the fewer side effects you tend to get. I don't know how true that is, but I've heard it from multiple sources.

What my oncologist told me, is that the most common side effects, those he called “quality of life" side effects such as hot flashes, go away once you stop taking the drug, so it is always possible to give it a try for a few months. You might be one of the many people who have minimal if any side-effects. I have a friend who has been on it for 8 years with not a single side effect, and I am going into my 3rd year and have had only mild ones - nothing I can't live with. Incidentally, she is 5 years younger than me (I am 45). If you do find the side-effects more than you want to live with, then you could always stop the drug without ever having to wonder “what if I had tried it".

Tamoxifen does not cause menopause, by the way. It decreases the effect of estrogen in some tissues (like the breast) but enhances it in others like bones and the uterus. The most common side effect is hot flashes, but I have known a few women in real life who take it and have not experienced that. I myself have had mild ones - more of a minor annoyance than anything else.

Best of luck with whatever you decide!

For anyone who is thinking of not taking Tamoxifen because of the side effects, I would like to share this information that different manufacturers add different fillers to this medicine which causes different side effects. If you try Tamoxifen and you can not handle the side effects, look at your bottle and see who manufactured it. Then next month switch to another company and see if the side effects are less. Try it and then decide if you can handle it or not. This way you won't blame yourself in the future for not trying.

I. Would always follow my Dr advice

hi,

Our dx is very similar and I am only 4% er positive. So.....will get my tamoxifen rx in a week. Going to try it and see before I decide against it. I too am tired of all all this chit, and it is a crapshoot if it reurns, as someone's already said. But feel like giving it a try

Believe me I am taking in eveything you all are saying.  I have been on herceptin since jan 3 rd  with taxol .  I am going to alk with my onc Friday im just so lost and fed up.  It  is personal  and at the same time I feel you all are the only ones that understand so I truely take any advice to heart .  Are there any tests to see if chemo worked or if herceptin has worked?  Thank you so much for taking the time to help me .   Also what about scans whats bthe best to see if it has spread ?  Currently I cant have an mri due to expanders.  I kind of am scared to talk to my onc and his nurse p is not any easier.  Im just so exhausted - bed ridden alot and I am going nuts.  Im inmpain 24/7 I sleep 35 to 45 min streaks thats it .   so sorry to go on with the poor me when so many women and children have it so much worse.  I need help and guidance .  Thanks again...   AC was tough but taxol is the icing on this nasty cake for me and I am praying its no the herceptin .