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Profile picture for whitehairwisdom @whitehairwisdom

I started the discussion because my onco doc suggested that I would be a good candidate for the low Tam trial due to my type of BC cancer and I wanted to know how someone on this drug at the lower dose was tolerating it however, after signing up for the trial, I was not chosen for the group to take 5mg of Tamoxifen but chosen for the other group which is a normal dose of an AI. After reading through a lot of the comments here on this forum, I opted not to participate and dropped out of the trial. I was willing to try the 5mg of Tam but not a higher dose of another drug. I even asked my doc do I have to participate in the clinical trial to get 5mg of Tam and the answer was "YES", which I found concerning. What drove home my decision not to take any drugs at this time were 2 comments the doc said to me and those were "well, you also have to consider your quality of life in making a decision" and "the drugs are to reduce distant recurrence". "Distant" recurrence I wondered? I'm 68 years old. So if taking an AI is only reducing recurrence later in my life and at a very small percentage, I'd rather enjoy the time I have left and not have to constantly battle with side effects of the drug, even if they are mild. What is most frustrating to me about BC treatment is after all these years and tons of money thrown at research, this is the best you got for us??? I am on the prowl now to seek out a 2nd opinion for my treatment, if any, however, I am not holding my breath that much will change. I will continue to maintain a healthy diet, stay active and get plenty of sleep in hopes that my cancer doesn't return. That's the best choice I think I have made for myself right now going forward.

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Replies to "I started the discussion because my onco doc suggested that I would be a good candidate..."

@whitehairwisdom I'm 72, stage 1 & had to twist his arm, figuratively speaking, but my oncologist prescribed a half-dose (10 mg) of Tamoxifen for me which will hopefully also protect my bones. It's only been a couple of weeks but no real side effects. I'm hoping I tolerate the 10 mg, otherwise I'll drop down to 5! We have to advocate for ourselves, I agree! Best wishes to you!

@whitehairwisdom Always good to get another opinion when you’re not comfortable with something.

My experience when I moved my care to a cancer research center, the oncologist & radiologist were specialized in breast cancer nd much more open to discussion and they were more comfortable going with a treatment plan that was outside of “guideline directed therapy”. When I was at a smaller hospital, they only offered what the guidelines said.

@whitehairwisdom because the 5 mg is not available here in the US, many women take the 10 mg Tamixifen every other day. With or without telling their doctors, it seems. I see their comments online!

@whitehairwisdom I am also 68 and have been on Letrozole for 2 years and I was having bone pain, and terrible dry eye, and I went to the oncologist today and I just said 5 mg of Tam or nothing. She tried to talk me out of it but I insisted on it. I am with you after all these years of research on breast cancer this is all they can do for us? I was supposed to be on Letrozole for another 8 years! I would have no bones or eyes left!!