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. But, Tamoxifen rage sends me from zero to bat-shit crazy in an instant.
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. The estrogen blocker is meant to stop estrogen in my system, and basically throw me into pre-menopause. My doctor warned me about tamoxifen’s 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 my doctor didn’t say was that these side effects would change how I look, sleep, think, act and feel.
I’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!
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.
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 effects 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.
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 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.
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. That makes me rage, too.
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!)
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.
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 anyone else is going to take it. So it’s not just me who feels the rage of the drug, tamoxifen rage is real for my closest friends and family, too. And that makes me even more emotional.
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 since I’m being controlled by my ‘wonder drug.’ It’s like I’m now possessed by 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 cancer. 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. Tamoxifen rage is real.
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!
I’m not a medical doctor, but here’s what I’ve learned from speaking with doctors. Please consult a professional for specific advice.
What are the long-term effects of Tamoxifen after discontinuing its use?
After discontinuing Tamoxifen, cancer patients may see a gradual reduction in the side effects they experienced during treatment. However, the long-term effects can vary greatly among individuals. Some may continue to experience certain symptoms like hot flashes or vaginal dryness for some time after stopping the medication. Research suggests that Tamoxifen can have a lasting impact on reducing the risk of breast cancer recurrence, with benefits observed even after treatment has ended. Nevertheless, there is limited information on the very long-term side effects, as most studies focus on the period during treatment and the month after discontinuing.
Are there any effective strategies or treatments to manage the side effects of Tamoxifen?
Yes, there are several strategies and treatments that can help manage the side effects of Tamoxifen, and I’ve tried most of these with different results. For instance, hot flashes may be managed with lifestyle changes, such as reducing caffeine and alcohol intake, or with non-hormonal medications prescribed by a healthcare provider. Vaginal dryness might be alleviated with over-the-counter vaginal moisturizers or lubricants. Exercise can help with joint pain and mood swings.
How does Tamoxifen compare with other hormone therapy drugs in terms of effectiveness and side effects?
Tamoxifen is often compared to aromatase inhibitors (AIs) like anastrozole, letrozole, and exemestane in treating hormone receptor-positive breast cancer. Both Tamoxifen and AIs are effective in reducing the risk of breast cancer recurrence, but they work in different ways and are prescribed based on menopausal status, among other factors. AIs are typically used in postmenopausal women and are associated with a different set of side effects, such as increased risk of osteoporosis and joint pain. Tamoxifen can be used in both premenopausal and postmenopausal women and is known for side effects like hot flashes and an increased risk of thromboembolic (that’s a big word!) events.
What specific support systems or resources are available for those struggling with Tamoxifen’s side effects?
Patients struggling with Tamoxifen’s side effects have access to various support systems and resources. Many cancer centers and hospitals offer support groups and counseling services specifically for breast cancer survivors. Online forums and communities can also provide a platform for sharing experiences and coping strategies. Nonprofit organizations dedicated to breast cancer support often have educational materials, hotlines, and programs to assist with the emotional and physical aspects of cancer treatment and recovery. Healthcare providers can also refer patients to specialists such as dietitians, physical therapists, or mental health professionals to help manage specific side effects. Talking through side effects with people who are familiar with the drug and with cancer is helpful, but doesn’t really help in the moment.
How do doctors decide on the duration of Tamoxifen treatment for an individual?
The duration of Tamoxifen treatment for an individual is determined based on several factors, including the stage and characteristics of the breast cancer, the patient’s menopausal status, and the presence of any side effects that might affect treatment tolerance. Historically, the standard duration of Tamoxifen treatment was 5 years, and other studies have shown that extending therapy to 10 years can further reduce the risk of recurrence and improve survival in some patients. Everyone is different, and 10 years might be too much for some people as extended treatment comes with an increased risk of side effects. The decision to extend Tamoxifen treatment beyond 5 years requires a deep discussion with your oncologist, where you can weight the benefits of extended treatment against the potential risks and side effects.
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I’m a travel and health writer, digital brand consultant, breast cancer survivor, and supermom to two boys! I keep it real and share stories of raising an active 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.