Tamoxifen Side Effects After Breast Cancer Suck!

Trisha | 21st May 19

Yeah it’s a real thing…and they should do more studies on it and how it affects us emotionally …being sad…mad, irritated and not feeling yourself …knowing this isn’t who you are or want to be and having little control over it .

Lisa | 12th Sep 19

Hey Samantha, I really appreciate finding your blog. I’m 6 years into taking tamoxifen and have decided, for all the reasons you’ve listed in your post about it, that my quality of life is suffering too much. And 6 years is a good run! I hadn’t read about it causing rage in any other articles, but that’s exactly what happened to me. I’m turning 45 next week and am excited to get back to feeling (hopefully!) normal again.

And then there’s this whole implant recall. I’m one of the 5% of people in the US who has these. Just another lovely thing to come to grips with.

Thanks again for taking the time to write for all of us who are out there reclaiming our lives after “the good kind” of cancer.

Michelle Forrest | 13th Oct 19

Left my house in a rage last night. That’s the latest one since taking the satan pill. I started in August this year. I was suspecting some it could be hormonal. It’s even worse when some upset with a situation is warranted but NOT your explosive reaction. I hope my marriage makes it through this. So far I am ‘lucky’ to not have the joint pain & while I don’t really sweat I’m hot & cold off & on all night. But hey! On the bright side my period has stopped 😬 THANK YOU FOR SHARING.

Tana McGhee | 4th Jan 20

I was diagnosed in 1996 with Breast Cancer that was estrogen receptor positive. My age at the time was 36, with a daughter just starting into high school. I had a mastectomy of the right breast, followed by chemo treatments for the several months. When diagnosed my system was very healthy and normal. Monthly cycle was always right on time and very normal. Chemotherapy had not been around very long, so research was limited to the public. Upon completion of the Chemo, my Dr. prescribed Tamoxifen. I began my research on this drug and determined all studies had been preformed on post menopausal women. No research had been done on any premenopausal women. Chemo gave me a chemical induced menopause, but prior to the chemo, I was still having a cycle. With the lack of research on women that were in the premenopausal category, I went against everything my Dr recommended, and refused to take the tamoxifen. It was a decision I do not regret at all…..I knew what was best for my body, and did not like the risk of additional organs becoming attacked by cancer. I too, asked for a hysterectomy, but was told it would not decrease my risk of Uterus cancer. Praising God with all the Glory, I have recently celebrated 22 years without a return of cancer. Do your homework and research Ladies, and trust the Spirit speaking to your gut about how to handle your diagnosis.

Mary Mouton | 6th Jan 20

Hi Samantha. Thank you for sharing as i really thought i was going banannas, and from a caring person to a raging bull. Dont forget the cramps. Oh, the cramps got me that my fingers legs and toes were in spasms and caused such agony. i flew out of bed in the middle of the night with a Charley Horse!! I am now on a differant chemo. The Tamoxifen is excellent, it killed my metastasis, but the cramps were hell.

Caroline | 28th Jan 20

I can not thank you enough for writing this – it’s like getting a massive hug! I’m only 2 months in and finding it so challenging. Everything you talk about I am also going through and I feel completely in the wilderness since treatment finished last month. Honestly in some ways this is worse than the bloody chemo… at least I had good days and there was an end in sight!

Jenny | 29th Sep 20

I’m so happy to have found this post! I have been on Tamoxifen for 4.5 years. I recently switched insurance & got a new Dr. I told my new Dr I was feeling “brain fog” and would you believe she basically would not confirm our medication has side effects and (wait for it..) she referred me out for neurological psych evaluation! I know right!…I lost my sh*t. She won’t even entertain the idea this medication has side effects…nor will she answer me when I ask her opinion. Thank goodness for this post! Feels good to know this brain fog is a real side effect & I am Not alone. *P.S. I’m getting a new Dr.

Jess | 28th Apr 21

Another aspect to this is that estrogen levels affect ADHD symptoms in women. In fact menopausal women with ADHD are sometimes prescribed HRT (estrogen supplements, basically) to counteract the worsening symptoms from a lack of estrogen. Guess what happens when you’re on an estrogen BLOCKER? I’d gone back to college before my BC dx and was a straight A student. Now I struggle so much with the simplest tasks. I’m planning on asking my oncologist about the treatment someone mentioned in another comment, but I can’t find anything about it after the initial studies in 2013 so I’m not particularly hopeful.

I get the rage/ lack of filter thing too. I’ve flown off the handle in family text chains so often that my siblings have started avoiding me. It’s awful. One one hand I’m so grateful that I can take Tamoxifen because my cancer is much less likely to come back, on the other it’s a terrible choice to have to make between living this way and risking a relapse. Oh and if this was a problem that affected men you can bet the research would have been done and a solution found years ago. >:(

JC | 7th Jul 21

Wow, thank you for sharing! Been on it for 1 year. I was told the side effects, and that there could be “mental fogginess” and joint pain, but that those side effects were not as common. Well, besides hot flashes & night sweats, my feet and hips hurt when I get up from sitting/lying down. Every day. I feel like a little old woman. But the mental fog is the worst! It’s impacted my memory, verbal comprehension and expressive language. I will forget what I’m saying mid sentence (once or twice a day), or forget a word and basically have to play Charades! But it’s reducing the chance of recurrence, so it is what it is. Again, thanks for sharing your experiences, as it helps others feel supported and might just give someone that push to keep at it!

LA in California | 17th Oct 21

Samantha I so appreciate your blog. I have been on Tamoxifen since August…started just on 10mg and almost immediately experienced the emotional swings, rages, lack of filter, exhaustion, mental fogginess similar to chemo, etc., in addition to the hot flashes, interrupted sleep, etc. Really awful. Switched to a keto diet, nearly eliminated caffeine and alcohol, and started a daily exercise routine (as well as added weekly acupuncture appointments). Didn’t eliminate the side effects, but definitely helped make them more manageable. But a lot of work!!

Follow up appointment with onco a week ago – he told me I really needed to step up to the 20mg dosage. I shared my concerns with him about the horrible side effects I had experienced and the extreme efforts it took me to get them under control. Now it’s been a week on the 20mg’s and all of the horrible side effects are back. Trying to decide whether to drop back down to the 10mg to regain my life and personality, or continue at 20mg and risk ruining my marriage, etc., but have the best benefit of “recurrence prevention”. What kind of choice is that to make?

Side bar – breast cancer survivors now have an option in the form of Effexor which can help with the hot flashes and some of the mood issues – it is not contraindicated with Tamoxifen (like many of the SSRI’s are). Might be worth an ask if your recurrence risk is high and you are going through what we are going through.