Wednesday, April 17, 2013

Tamoxifen, Not a Love Story. Part One.

Here is an excerpt from a recent post on the #BCSM website:
Endocrine Therapy Side Effects – Your Input Requested! By DrAttai On April 13, 2013 · 7 Comments

A bit of crowdsourcing help, please! I’m giving a talk at the upcoming The American Society of Breast Surgeons Annual Meeting – the title is: “Endocrine Therapy Side Effects and Treatment of Side Effects- What the Literature Says, What Your Patients are Saying”
Anyone comfortable with leaving your thoughts here, please do. No one will be mentioned by name or will be identified in any way – I’m interested in the side effects and remedies only. (...) Thank you all in advance for your help! After the talk, I’ll post the slides.
Here's my input:

I have had three primary Breast Cancers. Each was ER positive.

After my second primary, in 2005, I agreed to go on Tamoxifen, starting about a month after completing radiation. At that time, I still had an active infection in the surgery site (from lumpectomy 6 months prior); I was still healing from the open wound/burn caused by radiation, and I was in very poor shape physically, emotionally and spiritually. Ironically, at diagnosis in March 2005, I was the fittest, leanest, healthiest I had ever been, with an athlete’s resting heart rate, and I have always been a “tough” person with a high tolerance for pain.

So, when I began Tamoxifen, I was very much diminished. Immediately, I got terrible headaches (they went away after a month or so), and yes, I would get “hot” but nothing too extreme. That, I could live with.

Very quickly though, I went from having very little energy to having none whatsoever. My mind became completely and utterly shrouded in clouds of dense fog that every now and again would thin out, but only for a second or two. I began to have recurring nightmares* where I was trying to walk (never mind run!) and could not lift my feet, and when I would try to call for help, if I could find the words, they would come out in extreme slow-motion. I described it as feeling like I was constantly underwater, walking uphill, against a strong current. I have always had a sharp, wicked-fast brain, especially with words and concepts. That all turned to blubber. I would blank out, could not find the words/terms I needed to express myself, and to make matters worse, it constantly felt like I had those words at the tip of my tongue but could not summon them…. So there was an almost constant state of distress, anxiety and dismay. And fear that I would be like this forever. 

Many days, I did not feel safe to drive. Meanwhile, I was busy trying to get my life back together after this second cancer, was searching for work, and living alone with nobody to take care of me. At the time I used to joke that I could certainly carry on like this for 5 years (usual course of treatment with Tamoxifen) if I were independently wealthy and had a staff — a chauffeur, a chef, etc. to take care of everything. But even if I had been living the Downton Abbey lifestyle, it would have been unbearable and I wouldn’t have been able to consider continuing to exist like a zombie.

I toiled along for a year, and finally, after a detailed conversation with my oncologist, she agreed to give me a month off, just to see. Immediately I began to feel (only a tiny bit) better, and we prolonged the drug holiday. As I continued to improve (still only at a snail’s pace) she finally recommended that I stop taking Tamoxifen as it was having such a severe impact on my daily life. 

I was and still am extremely dismayed and angry that Tamoxifen is not viewed by many as a drug whose side effects can be as serious and impactful as those of chemo. I have done chemo, so I know of what I speak. Chemo is brutal, devastating, yes. BUT, for early stage Breast Cancer, adjuvant chemo is not something you have to do for 5 years. I am saying this because when I was done with “treatment” (i.e., radiation) for my second cancer, I had exhausted all my savings and resources and could barely afford my rent and health insurance premium, never mind medical bills. I reached out, for the first time in my life, for financial aid, and was told that Tamoxifen did not qualify as “cancer treatment” by organizations that offered to help cancer patients going through cancer treatment. So, if I had not spent my own money when going through what these organizations termed “treatment” and asked them for help then, maybe I would have had some left over by the time I was dealing with the side effects of Tamoxifen??

If I had been able to continue the prescribed course of Tamoxifen, I wonder if I would have developed a third primary. I will address my third primary in a separate comment.

When Tamoxifen has side effects like these, you don’t look sick, you are not bald, your blood counts are fine…. your suffering is invisible and you are very, very, very easily dismissed. Please shed light on this and help us.

Thank you for reading,

Liza Bernstein

*By the way, the nightmares I described were nightmares, but they also were expressions of what many of my waking hours felt like.

PS: here's the post I wrote about how this #BCSM initiative is a form of collaborative medicine in action.


  1. Thank you for this post. I often thought I was being a little dramatic when I would adopt the term "chemobrain" to describe the fog and cognitive dysfunction I experience on Tamoxifen.

    Validation. Thank you!

    1. Scorchy, you are most welcome! Thanks for commenting. I don't think you were being dramatic. I think the issue is that we feel we are being dramatic when trying to describe these side effects, because they are just not as dramatic as those of chemo, to the naked eye of onlookers (even educated, MD-type onlookers). That's the "very easily dismissed" thing I was talking about. So, thank you for confirming that.

  2. The real SEs for me were as follows:
    Extreme red eye, morning eye crusts, fuzzy vision.
    Severe crying jags, depression/sadness, bulimia (no kidding) severe fatigue, muscle fatigue and joint pain in the feet and hips. Acne, red-itchy-blotchy skin. Weight gain, constipation and vaginal dryness. The one positive I can say is that my remaining good breast (I had a UMX) did not hurt before my periods and Tam seemed to make my periods more regular than ever in my lifetime. I also had extreme cold intolerance and no real hot flashes. At least I got a second opinion and the Doc felt if I could get back to my previous healthy weight and lifestyle I had a better chance off Tam than on it at this point. I am disappointed but relieved to be off of Tam

    1. Thanks for your comment, Anonymous. I hear you about the mixture of disappointment and relief.

  3. More and more I really have to question the validity as to why we are taking these drugs!! Granted in some instances they may be necessary however I have been on them all starting with Aimidex, Femara and finally Tamoxifen I felt as though I was on a spiral to hell. From the first two I stayed on them for months hoping beyond hope the pain in my joints would disappear. After nearly 14 months it was either I stop taking them or I quit walking - that was not an option. Finally tamoxifen. With all of these drugs being introduced I felt as though I was in perpetual state of forced menopause! I was on tamoxifen , I went for all the tests in advance Pap Smear you name it along with an ultra sound Everything was fine! I began noticing things that after being forced into menopause I started spotting then bleeding heavier well I don't need to go into a description it wasn't pretty I began cramping - never had those before pain I saw the Dr they did an exam and he said I had several polyps, severe dysplasia and I would need a cervical biopsy to determine how severe. From going from nothing to something so severe the possibility of another cancer is not a question any longer. Why are we not told of these horrific side effects. Why do we have to go through all of this when the medical community is well aware there can be significant changes made that can cause another cancer?? After dealing with Breast Cancer then the possibility of this angers me and just creates another burden placed on me. The gynecologist suggested I go on a birth control medication however that is out as I have chronic high blood pressure that could cause a stroke or heat attack! I am not willing to take that chance nor should it be suggested I pick cancer or this..... I will be anxiously waiting on the next segment because there has to be better methods than being crippled or develop a second or third cancer because of it!!
    Thanks Alli x......

  4. I haven't taken Tamoxifen, but I am on generic Arimidex and the side effects for me have been quite profound. I'm starting to seriously consider switching or stopping altogether. It's one of those damned if you do and damned if you don't scenarios. Thanks for writing about this.

  5. Liza,

    I only lasted six months on Tamoxifen before I stopped taking it, even though my cancer was strongly ER+. I couldn't do it. My depression was severe. I could barely concentrate, making my performance at work plummet dramatically. I had severe hot flashes, which caused insomnia. I felt like my brain and concentration was just wrapped around by layers and layers of cotton, which I couldn't see. I was only 30 at DX and just turned 33, and I worry so much that my decision to stop Tamoxifen is going to come back to haunt me. But that's the hard decisions we have to make.


  6. I went off tamoxifen within 5 months. It was horrible. Just horrible. I cry thinking about how far down that medicine pushed me. I switched to fareston {though I think I'm using it off-label, but doc prescribed it and insurance pays for most of it}. It's probably not as effective, and for all we know it's not effective at all. But I feel SO much better on it. Like leaps and bounds better. I still don't feel like I did pre-cancer, but I'm mostly there. And for a long time I thought I'd never even get this close, I was so far down.
    It was a tough decision for me to make even though it made me feel so bad. It's hard to stop taking something that's supposed to "help" you even when you you feel like it's hurting you. A few people I knew were pissed off that I'd stop taking it (omg, you're going to die, the cancer will come back and it's all your fault). But my husband, my doctor, myself - we knew even if the cancer came back, at least I could have lived a life before that time. And there's no guarantee it wouldn't come back on tamox and there's nothing that says it has to come back since I'm off it. We just don't know. I was pissed at the people who tried to imply it was a death sentence.
    I did what I needed to do for me and for my family. And that's all anyone should care about.

  7. Stayed on Tamoxifen for almost a year, and thought I might possibly lose my mind. From brief but boiling hot flashes that people don't find at all serious to bone-crushing fatigue, memory loss, not to mention the guilt I felt because, you know, it didn't make me bald or vomit or subject me to the ravaging effects of chemotherapy. Then I switched to Arimidex, and my joints ache, I am still hot (but not in the appealing sense), and pretty pissed off that I have to take it for, what, nine more years?
    I take other meds that are supposed to help with the supposed side effects, but it's all rather expensive and depends on, amongst other factors, a fair degree of luck.
    Thanks for writing this. I'm wondering if it's just better to call it cancer brain and be done with it. Perhaps that would help keep us all a bit more unified as we adovcate for change.

  8. I'm so sorry you and so many others have suffered from Tamoxifen and similar drugs. I was Triple Negative and glad I didn't have to fight with the onc about not taking it. I'll never understand why all the treatment that supposedly keeps us alive has to kick the crap out of us doing it. I'm glad you wrote and shed light on this aspect of treatment that usually gets overshadowed by chemo and surgery.

  9. Thank you all for taking the time to read my post and leave your thoughts. It is comforting to see that I am far from alone in my experience with these medications. Like Scorchy said, sometimes you feel like you are being dramatic when trying to describe the side effects. I think that when you're not bald, not emaciated, not *visibly* suffering, it is so difficult to self-advocate. At least when you are dealing with surgery or chemo, there's a feeling that you are taken seriously from the get-go. I hope that the more we speak out, the more the word will spread. These are some SERIOUS chemicals, with some SERIOUS effects. It needs to be understood that these drugs are a form of Cancer Treatment.

  10. Tamoxifen made me suicidal for over two years. They Kept saying, "well you've been through a lot."

    I can't believe I felt that bad for that long. Glad to be rid of the stuff.

    Dianne Duffy