Afraid to take Tamoxifen

Google it.

Well, if you decide you want to, you can start taking it. You can always stop, it can some effects on other parts of your body but as far as I know they’re all reversible. I found the first two weeks I had some mild side effects. It took 3 months to get the full effect. At that point I started talking with the doctors, and my dose was lowered.

Hello @kj252 although I am sure google could add to your fears for you, I would love to de-escalate your worry.
I admit to being curious why they chose tamoxifen for you, I don’t know all of the details of protocol but I usually hear tamoxifen being prescribed for premenopausal women. I took it for the first five years if my endocrine therapy.
I didn’t lose a lot of bone density from tamoxifen, I did start to lose it a few years later while on anastrazole. The doctors have told me that walking is the best thing to prevent bone loss, bearing your own weight on a daily walk. This also kept the joint and muscle stiffness away from the tamoxifen. I found that during any endocrine therapies walking was the key to comfort.
I did have some side effects, the previously mentioned stiffness and most significantly the hot flashes from the forced menopause. This could have been from the ovary removal, but the combination left me feeling overheated.🥵
If I could avoid getting more cancer or more chemo by trying tamoxifen, I would give it a try, worst case scenario, if you can’t tolerate it, you can always talk to your doctor about stopping.
Is this the only endocrine therapy you have tried?

There are conflicing reports out there. Try Google Scholar and Mayo Clinic both. Everyone is different to complicate it more. My experience was horrible for over 10 weeks. This is only me, but I quit 20mg Tamoxifen and will never go back. One thing, several studies say it's for premenopausal women. I'm 86. Why my doctor put me on it is beyond me but after my extreme side effects I changed doctors and my new oncologist is much more open to my questions and my desires.
The half life varies in different studies. But after a month of not taking it my side effects are lighter the last few days now but still there. Scary to think what would have happened if I'd taken it longer because those half-life days continue to add up if you're take it every day. Even if you are lucky and your doctor starts you on 10 mg which my first oncologist would not even consider.

I'm in my last/5th year of Tamoxifen 20mg. The side effects for me have included endometrial thickening and polyps, resulting in a D&C. Luckily, it was negative since tamoxifen can cause endometrial cancer. The other side effects I had were weight gain of 20lbs, osteopenia, hot flashes, insomnia, extreme fatigue and body aches. I have also developed gallstones but I don't know if those are directly related. I started at 47 y/o when I was pre-menopausal, although I stopped having my periods since then with the chemo. Now that I'm post-menopausal I have the option to change to anastrozole for the last year, but I will probably stick to tamoxifen.

I am close to your age at 87. I was on Tamoxofen for about two years until my doctor switched me to Anastrozole. I had lumpectomies twice - 2020 and 2024 on opposite sides. At first I was dismayed that the meds did not prevent a second cancer until I learned they are not 100% preventive. My doc suggests the Anastrozole for an additional two years - thus 7 years with Tamox and Anastro combined. I am on 1mg of the Anastro. I wonder how that helps. Sleep has been affected and bone density is affected although my doc doesn’t suggest treatment for that yet. Thinking of the half life is scary.

I'm 62 and was dx with early stage dcis last summer. I had a lumpectomy followed by radiation and then began my hormone therapy with tamoxifen. My oncologist suggested a course of 'baby tam' which is 5mg/day of tamoxifen vs traditional 20 mg/day for 3-5 years. I did quite a bit of research on my own and looked at the studies and felt very comfortable going the baby tam route. I was also very concerned about tamoxifen but other than a recurrence of hot flashes it's been fairly smooth sailing. I so empathize with your fear and am sending a big hug. Take a look at the research into baby tam and if interested, ask your oncologist if it might be a good route for you. And as others have said, you can always start and if it's too much you can stop or switch to an AI.

I didn't think Tamoxifen caused bone loss, now I'll have to go back and check. However, I took it for maybe a week and only got about 4 hours sleep nightly, so I quit taking it.

I have extremely bad osteoporosis so other options not advisable

Am definitely going to check into baby tam. Thank yoi