Premenopausal and Starting Tamoxifen -- Looking for an Ongoing Chat
I took my first dose of tamoxifen last night and am feeling so much dread around it. I put it off due to avoidance and confusion around the small impact that taking it has on my future recurrence rate (4% vs 8%). Looking to find peace in this journey and am wondering how others have figuratively 'swallowed the pill' of having to take something that can be so damaging for 5-10 years. I realize others have had to have more severe treatments and I should be grateful that I was "surgically cured" of my invasive Stage 1b breast cancer via my double mastectomy, but I still find it crazy that this is our only option to reduce future recurrence risk. Would love stories of those who have had very minimal side-effects or none at all. I woke up sweating in the middle of the night, but am not sure a single dose would have done that so soon. My oncologist makes it like it's "no big deal," but I've had other physicians acknowledge how bad the drug is for our systems. And then there are all the people taking HRT and here we are taking these hormones away from our cells. Just looking for peace on this journey and for others to talk to about this.
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Hi wekeepgoing (great user name - it's all any of us can do!)
I have had next to no side effects on tamoxifen touch wood. The odd hot flush here and there (supposed to be lower chance of recurrence if you get the hot flushes on it apparently) and guts a bit sluggish. I put these down to being menopausal after my chemo rather than the tamoxofen per se though who knows.
I work, take daily exercise, raise my family and live my life in much the same manner as before my diagnosis.
My friend is on it and is doing fine also.
I have been on it for 4 years. The original plan was to switch me over to an AI at 5 years but now my oncologist thinks maybe just continue on the tamoxifen since everything is good so far.
My plan? Stay on it forever if I can convince anyone to prescribe it...
I must admit I struggle to see why it wouldn't be worth a go for anyone eligible to take it. If there is a significant reduction in QOL then that is a different conversation of course.
Good luck with whatever you decide.
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Hi. I’m 3 weeks in on tamoxifen. I was dreading it too but my oncologist was pretty reassuring that we could deal with side effects if they happen. I woke up sweating last night too :) I have talked to women who have done ok on it. I’ve heard that the side effects can ease with time. I’m stage 1 and I’m really afraid of it coming back so this feels like something I can do to help. I hope it isn’t too awful.
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I had an incredibly hard time for one week on Tamoxifen and stopped it. It’s not worth the small percentage. I had ALH and three large radial scars, among other precancerous lesions . I had a large lumpectomy on right breast breast.and quite a bit of tissue taken out. Tamoxifen affected my joints, eyes, head pain. It made me just feel overall physically awful. Just not worth it for me. I have to run the risk it doesn’t pay for me to feel absolutely horrible and not sleep.
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Hi Everyone, thank you for your comments. I am on day four and, besides a monster cold that I have, I haven't noticed anything. Just night sweats the first two nights, but then I haven't had them! I'm feeling surprisingly empowered against a cancer recurrence and that feels good. I was Stage 1b and only had a mastectomy, so this really helps with feeling like I'm doing something to prevent future cancer recurrence. I already worked out every day, am a vegetarian, don't drink, and eat super healthy. I didn't feel there was much more I could do, so I'm seeing this as a useful tool. I'm going to keep this mindset and hope to keep side effects minimal. I will say I feel I'm very conscious of taking good care of myself and just more aware of my body and what it needs in general. Please feel free to keep this conversation going and share your journey with tamoxifen. That would be really helpful for me!
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I’m finding the mood side effects to be pretty awful, terrible anxiety and I just want to crawl in bed and cry. It’s only been a month. I can’t do this for 5 years. Is it better on an AI or worse?
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