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… read on.
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.
This 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 an 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. You see, the estrogen blocker is meant to stop estrogen in my system, and basically throw me into pre-menopause.
My doctor warned me about side effects of tamoxifen: 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.
I’ve been taking this drug for two years and the doctors want me to stay on it for another 3 to 8 years! Soooo in the spirit of doing whatever I can to see my boys graduate high school, I get to take a drug that makes me bat-shit crazy 50% of the time. Read why tamoxifen is the devil…
Each morning I get up and sort of 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 sort of 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.
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 my 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 cannot 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.
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 am 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…. however 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 sort of 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 I can’t control myself. The drug is controlling me. Sometimes I can barely stand myself. It’s ugly.
The 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 sort of bright red and sweating profusely. It looks super attractive when you are in Trader Joe’s checking out with the perky cashier, or some other public place. I typically get 2-3 hot flashes per night and wake up drenched and need to get up and grab a towel to wipe off. Which again starts the cycle of sleeplessness.
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 am often forgetful and there are 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, and 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!)
Another upsetting side effect I’ve experienced while taking Tamoxifen is weight gain. Tamoxifen is designed to shut down hormones similar to 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.
One of the worst parts of Tamoxifen is I seem to have lost that ‘filter’ we typically use on a daily basis. I’ve turned into that 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.
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.
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 3 – 8 years, where 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 and can you relate?
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.