Tamoxifen Side Effects After Breast Cancer Suck!

Great news! If you’re the one in eight women diagnosed with breast cancer, and your particular cancer is hormone positive, ‘all you need’ is surgery, maybe a little radiation, and the magical drug tamoxifen. I say this in jest… tamoxifen side effects after breast cancer suck!

Tamoxifen is a drug that blocks estrogen receptors on breast cancer cells, and a large number of people diagnosed with breast cancer are estrogen positive (meaning cancer cells snack on these hormones to grow and exist). My breast cancer was hormone positive and apparently this is the ‘good’ kind.  The reason being, doctors know what feeds my particular flavor of cancer and therefore they know how to treat it and what to typically expect.
tamoxifen side effectsThis daily tablet is given to hormone positive breast cancer patients, for five to ten years after treatment, to lower the risk of the cancer recurring.  Tamoxifen isn’t technically called chemotherapy, because it’s a anti-hormone agent that blocks the effect of estrogen and stops the cancer from ‘sticking’, while chemotherapy attacks cancer cells (and every other living cell it reaches). The thought is chemotherapy will kill the bad cells before it kills enough of the good cells that will kill YOU.  The estrogen blocker is meant to stop estrogen in my system, and basically throw me into pre-menopause. My doctor warned me about tamoxifen side effects after breast cancer: cervical cancer, blood clots, hot flashes, headaches, weight gain, mood swings, nausea, fatigue, depression… the list is endless.  Lovely right?  What she didn’t say was these side effects would change how I look, sleep, think, act and feel.

tamoxifen and menopause jokesI’ve been taking this drug for four years and the doctors want me to stay on it for another 1 to 6 years!  Soooo in the spirit of doing whatever I can to stay alive, I take a drug that makes me bat-shit crazy 50% of the time.  Read why tamoxifen side effects after breast cancer suck!

Tamoxifen makes your joints ache

Each morning I get up and hobble around for the first hour in unbearable pain.  I have a sharp pain in the crease where my ankle meets my foot.  It’s so weird.  I ache all over and my bones ache.  It feels like those growing pains from when you were a kid except I don’t grow out of them.  I get to endure them until I stop taking this wonder drug.
one of tamoxifen side effects is it makes you angry

Tamoxifen after breast cancer messes up your sleep

I don’t remember the last time I slept a full night without medicinal help.  I hate to take more medication to counteract the side effect of a medication, but sometimes I am simply exhausted and need to sleep.  Without a sleep aid, if I do sleep it’s in hourly intervals.  I typically wake up twice per night soaking wet from hot flashes (we’ll get to that later) and then toss and turn trying to fall back asleep. My eyes are dead tired, my body is dead tired, yet I can’t fall asleep.  When I finally do fall asleep, it’s usually an hour or so before I need to wake up and do the morning joint pain hobble to get the boys ready for school.
tamoxifen side effects of breast cancer

Tamoxifen rage is real (just ask my poor family)

Taking Tamoxifen is like going through menopause x 100.  Tamoxifen stops my body from producing hormones (which remember feed my cancer), and when my body is free of these hormones, consequently I’m in a complete pre-menopausal state.  Except when females typically go through menopause, they are given hormone therapy to counteract this radical change to your hormone levels to provide some sort of stability to your body. BUT I can’t take any sort of hormone replacement therapy in case it feeds my f-ing cancer and it decides to take a tour of my body again. Tamoxifen rage sends me from zero to bat-shit crazy in an instant. It’s like massive mood swings sprinkled with fits of rage.  In fact I’m feeling ragey (is that even a word) just writing this and remembering how f-ing unfair this shit is. My poor family have taken the brunt of this, and the sad part is I know when I’m in my ‘Tamoxifen Rage’ yet can’t control myself. The drug is controlling me. Sometimes I can barely stand myself.  It’s ugly.

tamoxifen is terribleHot Flashes

My hot flashes seem to come at the most inopportune times. They are not really flashes of heat… that’s such a myth… in fact I don’t feel hot, instead, the only way I know I’m having one is when I feel droplets of sweat roll from my neck slowly in between my plastic chest area, and around my hairline.  One minute I’m freezing cold, and the next I’m bright red and sweating profusely. It looks super attractive when I’m in Trader Joe’s checking out with the perky cashier, or some other public place.  I typically get 2-3 hot flashes per night, wake up drenched and need to get up and grab a towel to wipe off. Which again starts the cycle of sleeplessness.

Tamoxifen after breast cancer gives you ‘chemo-brain’

Maybe you’ve heard of chemo brain, and lucky me, tamoxifen simulates this.  Low estrogen levels tamper with specific cells in your brain. These changes feel like my brain is sitting in a cloud of fog.  I’m often forgetful and experience intense changes in my ability to focus, remember information, or just keep track of everyday tasks. I often ask my kids the same question over and over, which is frustrating for all. After two years of this, they now patiently repeat themselves as many times as needed (for fear of sending me into a tamoxifen rage I think!)

Tamoxifen Tummy

Another upsetting side effect I’ve experienced while taking Tamoxifen is weight gain. Tamoxifen is designed to shut down hormones to simulate menopause in my body.  Since these hormones are not around to regulate my metabolism, it’s at a grinding halt. This makes it harder to keep weight off. Super cool.
tamoxifen side effects of breast cancer

Tamoxifen makes you blurt things you should probably keep to yourself

One of the worst side effects of Tamoxifen after breast cancer is I’ve lost that ‘filter’ we typically use on a daily basis.  I’ve turned into a crotchety old grandma who says whatever she pleases without thinking how anybody else is going to take it. My thoughts sometimes blurt out of my mouth without any restraint. The worst part is I know it’s happening, but again am unable to stop it since I’m being controlled by my ‘wonder drug.’  It’s like I’m possessed by the Tamoxifen.

Blood clots and other breast cancer related problems

The drug also raises the risk of blood clots and endometrial cancer. Which means all my other doctors keep a close eye on me for risk of developing cancers. Which is good and bad. Each time I go to my OBGYN I’m given a biopsy of my uterus, and if you’ve ever had one of those, you know it’s along the pain scale of a root canal without anesthesia.  Except in your lady parts.
why tamoxifen sucks and is a horrible drug

Tamoxifen Side Effects Conclusion

So there you have it.  I can’t shut up, regulate my body temperature, lose weight or sleep. And I hurt all over. My family is probably going to disown me due to tamoxifen rages, in which case the hot flashes at night won’t be a problem. My option is to take this wonder drug to stop my cancer from recurring (that also changes my life) or live with a high risk of recurrence of breast cancer. Thank you breast cancer… the gift that keeps on giving. Thank you Tamoxifen, you freaking ‘wonder drug’… I feel so lucky we get to hang out for the next 1 – 6 years. I’m told your delightful side effects continue to get more intense.  I will survive the time we have together, because I don’t really have another option and you don’t scare me. But I can’t guarantee I won’t complain about you in one of my rages and throw you at the wall!

Do you take or know someone who takes tamoxifen after breast cancer? Can you relate?

About The Author

Samantha

I’m a travel and health writer, digital and brand consultant, breast cancer survivor, and supermom to two active boys! I keep it real and share stories of raising feral wolves teenage boys, family life after a cancer diagnosis, and family travels around the world! Each story is shared with my dry, and sometimes naughty sense of humor.

33 COMMENTS

  1. Barb Tressel-Bangas | 6th Jun 18

    AMEN! Thank you for the article! I’ve been on tamoxifen since 2013. I’m sorry you’re going through it too … however, it’s a relief to know I’m not the only one. Best to you & your family!

    • Samantha | 6th Jun 18

      Urgh… sorry you are going through this too… the doctors don’t share the nitty gritty do they?!?! Sending health and love to your family!

  2. Maria | 2nd Jul 18

    Thanks! I thought I was going crazy. Sending hugs and love to all those who are going through this wonderful(sarcastic as hell) journey!

    • Samantha | 2nd Jul 18

      Nope not crazy.. it’s just the wonder-drug making us crazy! Lucky us! xx

  3. Amy | 12th Aug 18

    I lost my family over this devil drug tamoxifen. I took it for eight years, as my mother inlaw die of secondary breast cancer, hence husband encouraged the drug and yet unable to accept my “tamoxifen rages”. So my family abandon me when I suffered from severe mental health. Life goes on, I stopped taking the drug after my crisis which prompted me to re-evaluate what’s wrong with me. But it WAS NOT ME, the drug took control of my Brain. Enough is enough! I am now medically decease free, ie cancer free – not sure the sever side effects was worth it. But I am now me, I have control over my emotions and behaviour. Was so shocked by the chemical effect it had in my brain. Think and evaluate what’s best for you. The side effects are real…;(

    • Samantha | 14th Aug 18

      Oh Amy. I’m so sorry to hear of your battle with this drug. The side effects are different for everyone, but for me, and it sounds like for you too, they are very real and not fun at all! Stay healthy!

  4. Amy | 11th Nov 18

    Thank you for writing this. I am really struggling in life right now. I feel extremely moody and sad, and I lash out and get mad at people very quickly. I have spent the last few months wondering what is wrong with me. You know what’s wrong with me? NOTHING. ITS NOT ME. Its just Ive been on awful Tamoxifen for 5 1/2 years now, and I think this is a side effect that is getting worse and worse. I dont know what to do. I got diagnosed at 31 and my onc is dead set on keeping me on Satan pill for 10 years. I just dont know if I can stay on it. I truly hate being an asshole.

    Thank you for letting me vent. I really appreciate you writing this article and sharing your thoughts.

    • Samantha | 12th Nov 18

      Oh Amy… I hear you loud and clear. In fact I asked my oncologist if I could come off of it, and she said the alternative is just too risky for me for recurrence. The worst part is that people expect you to be ‘over’ the cancer thing, and they have no idea the lingering effects and challenges. Hang in there. I feel your pain! XXXX

  5. | 12th Dec 18

    I recently was suspended from work may not have a job there after this latest massive mood swing

    • Samantha | 13th Dec 18

      Oh no… so sorry to hear this… Sending you love and well wishes.

  6. | 30th Jan 19

    Omg!!! I’ve only been on tamoxifen for 6 days and I’m losing my effing mind. I resisted at first but 5 months after surgery 3 more breast cancer tumors popped up. I feel the effects within about 20 min after taking it and I am shocked at how powerful it is. I am about to quit already and go back to taking DIM and double up my dose.

    Thank you for sharing because I just didn’t want to believe I could feel this crazy.

    I’m going to go all in with cannabis and fasting and natural treatments because life ain’t worth living like this.

    xoxo

    • Samantha | 7th Feb 19

      urgh, I am so sorry that you also are going through this…. it really is the devil! Sending love and healthy hugs your way! XX

  7. | 8th Mar 19

    The only thing I think will help research and resolve the side effects is if everyone who prescribed it had to take it themselves. My suspicion is that this medication ruins 50% of the relationships it touches.

    • Samantha | 9th Mar 19

      Agree… the side effects are devastating and pretty hard to live with, and unless you take this drug you have no idea how severe they are. Hang in there!

  8. | 12th Mar 19

    I HATE Tamoxifen! It is a nasty drug I wish I could flush down the toilet and forget! I can’t stand feeling stupid, achy, fat, lethargic, …… Oncologists should really have to take it for a few months. I guess, actually, pharmaceutical reps should have to do the stop pushing it!

    • Samantha | 13th Mar 19

      It really is the devil… I wish there were another option! Stay strong!

  9. | 10th Apr 19

    Thank you for helping me get through another lovely, tamoxifen-filled day. It truly helps not to be alone. XO

    • Samantha | 11th Apr 19

      Happy to help! 🙂 . so sorry you too are taking this crazy making drug!

  10. amanda.kean@btinternet.com | 13th Apr 19

    So relatable, I’ve been on tamoxifen since December and I hate it with a vengeance…. Horrendous joint pain which stops me sleeping, hot flushes, fatigue and has made my depression and anxiety return ….. So tempted to stop taking it but fearful of reoccurrence …… And sick of people telling me how well im looking ….. Appearances are deceptive …. I may look fine and have a smile on my face but most of the time I feel like crap …. Hate tamoxifen and hate cancer. ! Xxx

    • Samantha | 13th Apr 19

      I wish there was more discussion around tamoxifen and the horrible side effects… i feel that so many people are suffering in silence… so sorry you are going through this too…

  11. Vivien | 20th Apr 19

    Thank you for sharing! Tamoxifen rage is making me hate myself. I tried so hard to control my tamper but I still go crazy! It seems like it is getting worst as time goes on. I feel bad for my kids. I totally agree with you about you know you are on tamoxifen rage but can’t control it. I know I had said hurtful things 😭 I wish there is other choice. I hope my kids still think that I love them even mommy get bat-shit crazy 10 times a day.

  12. 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 .

    • Samantha | 23rd May 19

      Not to mention the weight gain… i would love to have more studies on this ‘miracle drug’….

  13. Andrea | 19th Aug 19

    I am on Tamox for a little over a year. Already quit it once, but my Onc frightened me into going back on. Girl, U nailed it in this blog! My very serious challenge with the behavior & sweat aspects are; I’m homeless. In San Francisco. Stopped being able to afford living here about 10yrs ago. Thats what happened to a whole lot of us low wage workers here in the past decade. Was diagnosed w ER+ tumor 4 yrs ago. Been homeless the entire time, which, the extreme behavior puts me at risk with authorities with guns, like police. & I don’t get to change clothes or take a shower whenever I want. Sometimes I can’t afford to take a shower for over a week. When I’m all thru with my 5yrs of Tamox, I’m throwing a huge party & gonna burn a giant Tamox bottle effigy, like “the Man” @ Burning Man:-)

    • Samantha | 19th Aug 19

      oh Andrea, sending you prayers warrior sister!

  14. 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.

    • Samantha | 13th Sep 19

      HI Lisa! There really needs to be more support for those ‘lucky survivors’ of cancer… i feel as though we are left alone to flounder and be grateful we didn’t die… which of course we are… but we are truly different people now due to what we have been through. Hang in there warrior sister!

  15. Andrea | 13th Sep 19

    I just found this: Tamoxifen kills Glial Progenitor CNS cells!!! this is why we feel so bad. You can educate yourself here: https://www.webmd.com/breast-cancer/news/20130917/tamoxifens-mental-side-effects-are-real-study-shows#1
    also here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776059/
    and never fear! There is a drug therapy that helps keep the mental side effects from manifesting, keeps the Glial Progenitor cells from being toxiified by Tamoxifen and also helps Tamoxifen keep cancer cells from developing: the class of drugs is called MEK 1/2 Inhibitors.
    https://www.ascopost.com/News/8564
    “Researchers from University of Rochester Medical Center have shown scientifically what many women report anecdotally: that tamoxifen is toxic to cells of the brain and central nervous system (CNS), producing mental fogginess similar to “chemo brain.” In the study, published in the Journal of Neuroscience, the researchers also report the discovery of an existing drug compound that appears to counteract or rescue brain cells from the adverse effects of the breast cancer drug.
    Corresponding author Mark Noble, PhD, Professor of Biomedical Genetics and Director of the University of Rochester Stem Cell and Regenerative Medicine Institute, commented that it is exciting to potentially be able to prevent a toxic reaction to one of the oldest and most widely used breast cancer medications on the market. Although tamoxifen is more easily tolerated compared to most cancer treatments, it nonetheless produces troubling side effects in a subset of the large number of people who take it. 
    By studying tamoxifen’s impact on central nervous system cell populations and then screening a library of 1,040 compounds already in clinical use or clinical trials, Dr. Noble’s team found that the investigational MEK1/2 inhibitor selumetinib (also known as AZD6244 essentially eliminated tamoxifen-induced killing of brain cells in mice.”
    I don’t know why my oncologist nor the psychiatrist I have sought care from offered me this drug.
    I’m very upset. But at least I’m not alone. I’d blame Medicaid & being poor, but obviously not all the comments are from people are on Medicaid & who are poor. Esp not Samantha. So, somehow We All have been left out in the cold to suffer. So SAD. I’ve got an onc appointment on Oct. 2, 2019- in 3 weeks. I cant wait to ask my onc why in the h-e-double hockey sticks she has never offered me this drug even tho ive been complaining of mental side effects since about 1 week after starting Tamoxifen 3 & 1/2 yrs ago. THANK YOU FOR YOUR DEEP COMPASSION & SUPPORT!!! YOU HELPED ME SO MUCH!!!

    • Samantha | 13th Sep 19

      Wow…. what fascinating reads… I will also be asking my oncologist about this too. I honestly think that more needs to be done to support cancer survivors after treatment… we’re left to sort of feel lucky to be alive… which we are obviously… but our lives are very very different now due to the chemicals in our bodies. Sending you love and support warrior sister! xx

  16. 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.

    • Samantha | 14th Oct 19

      I am right there with you sister! I’m so sorry you too are experiencing these horrible side effects. Hang in there for the crazy ride! XX

  17. Hermien | 25th Oct 19

    Thank you!!! I’m not alone in this and not making it up… I’m not recognizing myself anymore, especially when I’m angry (or upset)… I have 8 more months to go to end the 5 years, yeah!! Counting the days… no: counting the hours and minutes!!!! 😉
    I really hate the tamoxifen, because of this hell medication I lost contact with our daughter (just turned 20) haven’t seen her for 6 months now… She doesn’t want any contact with us (= mum and dad and grandparents) and blocked us everywhere. It’s killing me!!! Now she believes she was mentally abused and I am a narcistic mum 😱😢 I am a lot, but abusive and narcistic??? No way! Overprotective yes, and even more after being diagnosed with breastcancer… nothing is certain anymore after that…She was my biggest reason to fight! I wanted to see her start her own life, graduate, getting married (or not) and all that stuff!!
    I don’t know what to do… don’t know how to keep going… will she ever come back? In 1 year? 2, 5, 10? This is even worse than the diagnose itself…

    • Samantha | 30th Oct 19

      Hang in there! Hope you are able to work things out with your daughter, I’m so sorry you are going through this!

Leave A Comment

Your email address will not be published. Required fields are marked *