Tamoxifen side effects are very worrying. Read these studies

Posted by brightside21 @brightside21, May 26, 2024

I'm on Tamoxifen for 10yrs as I've osteoporosis I can't swap to AIs.
My concerns are my long term brain health.
I've daily have severe headaches, poor concentration, all the usual side effects & none have diminished.

Tamoxifen and mental health

I wish to know what other women feel about this drug & if there are other recent 2024 study reports. Does this drug cause harm to our bodies whilst protecting us from the recurrant cancer? such side-effects of tamoxifen are very concerning when taking for 10yrs.
Please comment , thank you
The link below is of another study & also highlights the problems & issues of Tamoxifen saying "Tamoxifen is
shown to decrease performance on visuospatial, visual, and verbal memory tasks".

Please read below link
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11010888/

brightside21 | @brightside21 | 15 minutes ago
I'm too on Tamoxefen & having extreme brain fog, headaches, depression, poor cognition & concentration...etc...so have been researching & think we should all be very wary of these problems. Studies I've read are not extensive or totally conclusive but are showing up a lot of issues.
Please read this link
https://ascopubs.org/doi/10.1200/JCO.2008.21.3553

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Please talk to your oncologist about your side effects! There are options, like switching to one of the AI hormone blockers or reducing your dosage of Tamoxifen. I started taking 10 mg (half-dose) of Tam on Jan. 1st & I'm doing ok so far. I'm 72. Many people have to switch meds or dosages initially, before finding the right balance. Please reach out to your medical team & advocate for yourself! Sending best wishes!

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Profile picture for jmab @jmab

Please talk to your oncologist about your side effects! There are options, like switching to one of the AI hormone blockers or reducing your dosage of Tamoxifen. I started taking 10 mg (half-dose) of Tam on Jan. 1st & I'm doing ok so far. I'm 72. Many people have to switch meds or dosages initially, before finding the right balance. Please reach out to your medical team & advocate for yourself! Sending best wishes!

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@jmab Thank you for your support. I have an appointment next week with a list of concerns.

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I looked at Brightside's research article, and then tried to find a more recent study on the cognitive effects of going on Tamoxifen. Found this from 2024:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11747089/
It too found cognitive function was affected by Tamoxifen, especially in older women, and possibly dependent on dose. I'm glad there are "Baby Tam" studies of 5 mg going on now in the US. I started at 10 mg, and when my joints started aching 3 weeks in, I lowered my dose to 5 mg. I have Alzheimers issues in my family, so don't want to exacerbate that potential problem, at 76. I tried and found I cannot take AI's nor Fulvestrant, because of severe side effects on Blood pressure and severe leg pain & rash. Hormone blockers seem to be a big challenge for me.

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Profile picture for rphass @rphass

@jmab Thank you for your support. I have an appointment next week with a list of concerns.

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@rphass, how did your appointment with your oncologist go?

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Two years on Tamoxifen 20 mg after breast cancer surgery in 2023.. I was having vaginal bleeding so was on it, then off it. Every time I resumed taking it the bleeding started again. In August of 2025 I had a total hysterectomy. I already had precancerous tumors in my uterus and ovaries! Perhaps from the Tamoxifen! At present I am back on the Tamoxifen 20mg and my only complaint is extreme fatigue.

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I've been put on the Tomofloxan (obviously can't spell) to make sure my carcinoma in duct doesn't grow anymore. Slight side effect - more hot flashes. I feel like I've been on one continual hot flash since I was 38 and went into peri-menopause. I thought, Finally - it's over and I don't have to worry about looking like a drowned rat because mostly hot flashes affect my head.

If it does the job, it's worth it. Don't read too much material about it. Like every other drug out there, they are covering their behinds - ANYTIME one patient comes down with something unexpected, they have to add it to the long list of 'side effects'. The side effects are truly minimal.

Best to you!! -Jane

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Profile picture for antonina74 @antonina74

@7318
I initially was on Letrozole (AI) and after about 3 months experienced reflux, nausea and severe constipation that was so intractable I had to discontinue taking them. I tried other AIs and every time I wound up with the same unbearable GI distress. I felt I would rather risk the cancer recurring than live with such debilitating dysfunction. After a year my oncologist convinced me to try Tamoxifen at a very low dose- 5 mg. I tolerated it for about a month and then all of a sudden all the GI symptoms recurred with a vengeance. It has been almost two weeks since I stopped taking the drug, and I still am not back to normal, no matter what I am doing in terms of diet, herbs, supplements, laxatives, etc. Previously it took a few weeks for my system to regulate itself after discontinuing the hormone blocker, using all the above measures plus acupuncture. Has anyone who could not tolerate the hormone blockers found any alternative treatment to lower the risk of the cancer recurring?

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@antonina74 I'm sorry that you've been experiencing such challenging symptoms. I decided to take a holistic and alternative approach following my surgery. There are many wonderful alternatives and resources out there. A book by Dr. Michael Greger called 'How not to Die' has a whole section on breast cancer and is a good starting point. He has a load of free resources on his website too. It's called nutritionfacts.

For me I have adopted a Whole food plant based diet, daily aerobic exercise which can be brisk walking. Daily consumption of ground flaxseed and good organic soya products such as edamame, soy yoghurt/milk. Zero alcohol. Eating white mushrooms or take turkey tail supplements. Melatonin supplements and good bedtime routine. Melatonin has a similar action to tamoxifen (SERM).
Sulforaphane from cruciferous vegetables, broccoli seed sprouts and/or dried capsules - helps detox, aids programmed cell death in cancer cells but not healthy ones. Can potentially target cancer stem cells and aid in estrogen metabolism.

Anti angiogenic foods which are any with dark red and purple colours. These have been researched and help prevent tumours getting a blood supply (angiogenesis) - Look up the work of Dr. William Li.

Supporting liver detox either through diet and/or Calcium D-Glucarate will help clear unhealthy estrogen metabolites. A wholefood high fiber diet helps us clear the unhealthy estrogen metabolites through our gut because they can actually be reabsorbed there rather than being excreted, we definitely don't want that for ER+ cancers.

When your liver and gut break down estrogens, the resulting metabolites determine whether the process is healthy or potentially harmful. Some metabolites create cellular damage and increase risk of cancer. The Dutch Plus test can tell you your levels.

Cutting out meat, dairy, refined sugar, refined carbohydrates and processed foods.

Cleaning up chemicals from our lives as much as possible which includes even things like lavender oil. Many xenoestrogens disrupt our hormones so that's plastics, chemicals, certain natural compounds etc.

There's a reason our bodies became a host for cancer so if we change the internal terrain, we can make it less hospitable and reduce chance of recurrence. It's about taking ownership and making the changes in our lives.

You can research everything I've noted above, it's not fringe, it's researched and it all has an impact. I hope this helps and I wish you well on your journey.

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Profile picture for lab01 @lab01

@antonina74 I'm sorry that you've been experiencing such challenging symptoms. I decided to take a holistic and alternative approach following my surgery. There are many wonderful alternatives and resources out there. A book by Dr. Michael Greger called 'How not to Die' has a whole section on breast cancer and is a good starting point. He has a load of free resources on his website too. It's called nutritionfacts.

For me I have adopted a Whole food plant based diet, daily aerobic exercise which can be brisk walking. Daily consumption of ground flaxseed and good organic soya products such as edamame, soy yoghurt/milk. Zero alcohol. Eating white mushrooms or take turkey tail supplements. Melatonin supplements and good bedtime routine. Melatonin has a similar action to tamoxifen (SERM).
Sulforaphane from cruciferous vegetables, broccoli seed sprouts and/or dried capsules - helps detox, aids programmed cell death in cancer cells but not healthy ones. Can potentially target cancer stem cells and aid in estrogen metabolism.

Anti angiogenic foods which are any with dark red and purple colours. These have been researched and help prevent tumours getting a blood supply (angiogenesis) - Look up the work of Dr. William Li.

Supporting liver detox either through diet and/or Calcium D-Glucarate will help clear unhealthy estrogen metabolites. A wholefood high fiber diet helps us clear the unhealthy estrogen metabolites through our gut because they can actually be reabsorbed there rather than being excreted, we definitely don't want that for ER+ cancers.

When your liver and gut break down estrogens, the resulting metabolites determine whether the process is healthy or potentially harmful. Some metabolites create cellular damage and increase risk of cancer. The Dutch Plus test can tell you your levels.

Cutting out meat, dairy, refined sugar, refined carbohydrates and processed foods.

Cleaning up chemicals from our lives as much as possible which includes even things like lavender oil. Many xenoestrogens disrupt our hormones so that's plastics, chemicals, certain natural compounds etc.

There's a reason our bodies became a host for cancer so if we change the internal terrain, we can make it less hospitable and reduce chance of recurrence. It's about taking ownership and making the changes in our lives.

You can research everything I've noted above, it's not fringe, it's researched and it all has an impact. I hope this helps and I wish you well on your journey.

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@lab01 It’s true we can do a lot to manage what we eat and our exposures to reduce cancer recurrence. But closing the barn door after the horse got out approach will not guarantee that existing mutations, circulating cancer cells, or inherited risks can be suppressed with good healthy practices going forward. It may reduce percentages, but not zero out chances.

I try to keep on top of the research about best health practices especially concerning cancer. Some of it still needs sorting out. For instance taking melatonin while on tamoxifen has been shown to not be as effective as the linked melatonin-tamoxifen drug conjugates, a balance of the drugs. One study showed lower doses were more effective than higher doses.
Researching collagen supplements for improved skin and bone found articles reporting that high collagen in breast tissue was an enhanced environment for possible cancer cell expansion.

For me, I eat all those foods you list as beneficial, but I take low dose tamoxifen to ameliorate whatever prior environmental exposure or genetic mutation that gave me cancer.
Because I did always eat a mediterranean type diet, very low alcohol, and exercised. Yet, here I am.

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Listen to RubySlippers--she's right!
Years ago, when the only treatments for breast cancer were surgery and radiation, many women survived. AIs and Tam improve survival rates. But you might be lucky and survive without them. No one will force you to take them.
Regarding AI & T side effects: oddly, even though all 4 meds reduce estrogen, one of the meds might give you no or tolerable side effects, even though all the others were awful. Try all 4 before you give up on them.

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