Alternative to Tamoxifen other than AI

Posted by luckbme @luckbme, Jun 25 11:45pm

I had lumpectomy and radiation for invasive ductal carcinoma stage 2. Went through both very easily. Then I was told to start Tamoxifen. Nothing easy there. I'm miserable so taking a break after two and a half months. I should not take AI because of osteoporosis. And I've read that Tamoxifen results are all the way from 40% to 80% effective to keep cancer from recurring. Which is it? And surely there are other similar drugs to Tamoxifen? Anyone?

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Profile picture for worried1111 @worried1111

Hormone therapy keeps cancer down by 50%. If your chance of recurrence is 70% then tamoxifen will reduce your recurrence to 35%. If your chance of recurrence is 2% then it reduces it to 1%. However, I have heard that 1/4 cup of ground flax seed daily is more efficacious than tamoxifen! It should be organic and ground with a coffee grinder prior to eating. I have been testing my CA 15-3 after 2 months of flax and an AI and mine reduced fr 32 to 20.

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Isn’t flax seed a hormone or have hormones in it?

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Profile picture for pollyperf @pollyperf

Isn’t flax seed a hormone or have hormones in it?

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From Google: While flax seeds are not a hormone themselves, they do contain compounds called phytoestrogens (specifically, lignans) that can mimic the effects of the hormone estrogen in the body. These phytoestrogens, like those found in soy, bind to estrogen receptors and can have either estrogenic or anti-estrogenic effects depending on the individual and the specific situation.

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Profile picture for buckokey @buckokey

This is all so interesting—and disheartening— as I am just starting on letrozole for ILC. If I wind up with such bad side effects, wouldn’t it be wiser to just do mastectomy and avoid all the possible side effects? I get more disillusioned the more I read and want to believe doctors know best..,and then seeing that taking letrozole could cause so many problems to an aging (78 yo) body. I need some positives on how to proceed. Wish everyone well on our journey!

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Just to add in--I've been on letrozole for almost three years. I'm 71. No side effects and bone density remains fine. You might consider trying it and then stopping if it is too uncomfortable. Many women have no problems--not to discount those who do.

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I agree it's disheartening to read all the side effects. And I'm most of them with Tamoxifen. However, I do know two people personally who took Letrozole for 10 years with no side effects. But they were young. I am 86 and have five nightly maintenance drugs. I am deciding my maintenance drugs most important because a stroke or heart attack happens with snap of the finger. I am most likely to go off Tamoxifen permanently and the AI drugs aren't an option. Maybe I will start to feel better. The side effects of the Tamoxifen are still happening after 9 days of not taking it. This is after taking it for only 2-1/2 months.

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Profile picture for Miriam, Volunteer Mentor @mir123

Just to add in--I've been on letrozole for almost three years. I'm 71. No side effects and bone density remains fine. You might consider trying it and then stopping if it is too uncomfortable. Many women have no problems--not to discount those who do.

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Thank you for the positive feedback. I will see my oncology surgeon at the end of July so will know more by then. So happy to hear your good results taking letrozole!

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Profile picture for justforjoyce @justforjoyce

Hi. I take Toremifene which is a “serm” to tamoxifen. Fewer side effects for me than anastrozole. I am 72 years old. Way past menopause. Estrogen positive.

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Hi! @justforjoyce:

Thank you so much for sharing your positive experience with us!

I am so pleased and grateful to know that you've found a great alternative medicine to strive forward!

Best wishes for the journey ahead with better health to enjoy your loved ones!

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They told me tamoxifen is only for premenopausal women, which I was when I was diagnosed almost 5 years ago. I developed a blood clot while on it so I had to start taking exemestane instead which required me to get an injection of zolodex into my stomach each month to suppress my ovaries since there in nothing other than tamoxifen available for pre menopause (which blows my mind, honestly). The first two years were pretty horrible but the last couple years haven’t been as bad. But I’m afraid of long term side effects so I have decided I’m not going into 2026 on any AI’s against the wishes on my oncologist. The thing that really bothers me is that they only take studies and statistics into consideration. They do not consider lifestyle changes. I have made many lifestyle changes with the help of my integrative oncologist and a nutritionist and I feel very confident that I have lowered my risk of recurrence just by those changes alone.

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Profile picture for buckokey @buckokey

Thank you for the positive feedback. I will see my oncology surgeon at the end of July so will know more by then. So happy to hear your good results taking letrozole!

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I took 5 years of tamoxifen, followed by 10 years of anastrozole and although there were side effects, they were not debilitating.
I was in my 30’s, so my decisions would have been very different if I was in my 80’s. My decisions were helped by remembering that cancer has some pretty terrible side effects too. This made the hot flashes that last for hours more bearable and having to keep walking for the stiffness less irritating.
I know some women have very, very bad side effects, but there are more women who make it through the course of treatment, they just aren’t the ones typically posting on forums needing support.
Each of us has to decide what we can tolerate based on our own reaction to these medicines, but I would talk my doctor about quality of life before I give up on treatment. Likewise I would not refuse a treatment based on the reaction of another person. Maybe you will be one of those who has relatively no side effects and like @mir123 said you can always change course if it is too hard.
How long have you been on letrozole? How are you doing so far?

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Profile picture for Chris, Volunteer Mentor @auntieoakley

I took 5 years of tamoxifen, followed by 10 years of anastrozole and although there were side effects, they were not debilitating.
I was in my 30’s, so my decisions would have been very different if I was in my 80’s. My decisions were helped by remembering that cancer has some pretty terrible side effects too. This made the hot flashes that last for hours more bearable and having to keep walking for the stiffness less irritating.
I know some women have very, very bad side effects, but there are more women who make it through the course of treatment, they just aren’t the ones typically posting on forums needing support.
Each of us has to decide what we can tolerate based on our own reaction to these medicines, but I would talk my doctor about quality of life before I give up on treatment. Likewise I would not refuse a treatment based on the reaction of another person. Maybe you will be one of those who has relatively no side effects and like @mir123 said you can always change course if it is too hard.
How long have you been on letrozole? How are you doing so far?

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Thanks for sharing your experience. I’ve only been taking letrozole for a month but it’s scary to think all the possible side/after effects caused by taking it. At 78 I’ve been in relatively good health other than lumpectomy 24 years ago. Now invasive lobular carcinoma—after being told I had “nothing to worry about” when I developed an egg-size lump in opposite breast. So for over 18 months nothing was done until I went to Ob/Gyn after an mri showed endometriosis—another scare but that has been resolved. The Ob/Gyn examined my breast and I immediately saw the concern on her face. Everyone’s experience is different with any meds but I almost feel like they use us as guinea pigs. I’m just skeptical but want to believe my doctor(s). Because I live in a smaller community I’m having to drive 90 miles each way to see oncology surgeon. But I’m also seeing a local oncologist. I just hate the thought of the letrozole leading me to more health issues/meds/further side effects. Thanks for listening and I will try to not stress about what I’m seeing from others and have faith in in good hands. Blessings to you!

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Profile picture for buckokey @buckokey

This is all so interesting—and disheartening— as I am just starting on letrozole for ILC. If I wind up with such bad side effects, wouldn’t it be wiser to just do mastectomy and avoid all the possible side effects? I get more disillusioned the more I read and want to believe doctors know best..,and then seeing that taking letrozole could cause so many problems to an aging (78 yo) body. I need some positives on how to proceed. Wish everyone well on our journey!

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I have mastectomy but still on AI now 3 years, as it's the estrogen that is produce in your fat now that could cause trouble. Started with Tamoxifen with growth in uterus then Letrozole bone aches and diagnose with arthritis, then Anastrozole similar side effects but great mood and now Exemestane which just started and suppose to have no bone lost but all other symptoms and shitty mood. All the best to you all riding through the same journey!

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