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Three Things to Consider if You’re Thinking About Going Off Tamoxifen

In our monthly column, senior writer and editor Adriana Ermter shares her personal experiences with breast cancer.

By Adriana Ermter

Chances are, if you have breast cancer you’ve heard about Tamoxifen. I remember the first time my oncologist talked to me about the chemo-infused hormonal-therapy drug. It was during my weekly check-up when I was still having daily radiation. He explained that because the cancer cells found in my right breast were 95 per cent estrogen and progesterone receptor positive, my body’s natural hormones could attach to the cancer cells and help them grow. Obviously I didn’t want that, so I said yes to the drug without even hesitating.

Tamoxifen, I was told, would block my body’s ability to produce hormones, lower my risk of a breast cancer recurrence and improve my chances for survival. The only catch: I needed to take 10 mg of the drug every single day for the next five years as soon as I finished my last radiation treatment.

In theory, having a Tamoxifen prescription sounds super manageable. In comparison to invasive and painful chemotherapy and mind and body draining radiation, popping a pill once a day is as easy peasy as it gets. That is, if you don’t factor in the drug’s 20-plus and very real side effects, such as joint pain, headaches, weight gain, nausea and vaginal pain, complete with full-on menopause and medical risks. And yes, that absolutely means night sweats, hot flashes, zero libido and even, the possibility of blood clots, stroke and uterine cancer. So while the Canadian Cancer Society credits Tamoxifen as the most commonly used anti-estrogen drug, a French study published in the Annals of Oncology also showed that 42 per cent of women stop taking the drug within the first two years of treatment.

I get it. The drug can be all-consuming and horribly debilitating. The way it impacts your body and life feels personal and the negative side effects can last for as many years as your prescription. So just like no two breast cancers are the same, so is every woman’s experience with Tamoxifen, which is why many consider ditching the drug before their prescription is up. If this sounds like you, here are three things to consider. 

  1. Be Your Body’s Best Advocate
    You are your body’s best advocate, so if you want to question or address the effect Tamoxifen is having on your body, then do it. Only you know what is best for your mental and physical health, so tune in and listen to what your gut is telling you and respond accordingly. I know this isn’t always easy, but it’s worth it. If I hadn’t pushed to have a mammogram and ultrasound when I initially found the lump in my armpit (which was, at that time, determined to be nothing) and then, if I hadn’t called the breast cancer clinic every week for the next six months afterwards to have the lump looked at again, my cancer may not have been diagnosed early and as Stage 1. Always act on and speak out about what feels right for you.
  1. Connect With your Medical Team
    If you’re like me you have a whole team of breast cancer-focused doctors supporting you including an oncologist, surgeon and radiologist. Take advantage of their collective expertise, book an appointment and tell them how you’re feeling about being on Tamoxifen. Leave nothing out. Yes, I know it’s awkward and sometimes downright embarrassing to talk about your frequent peeing, your 24/7 brain fog or how your vagina feels like sandpaper, but it’s worth it. Sharing insight about how you feel with your medical team will help them better understand your situation and potentially present you with alternative treatment options such as, reducing the number of milligrams of Tamoxifen you’re taking each day, replacing the drug with a different hormone therapy or taking a hiatus from your daily dose to give your mind and body a break. But you have to speak up, because they can’t support you if they don’t know there’s an issue. Self-advocacy is a good thing and should never be confused with complaining, because it’s not.
  1. Ask Yourself a Series of Questions
    When I was struggling with my meds, I wrote a pros and cons list about Tamoxifen being a part of my treatment plan. It reminded me of high school when my friends and I used to make these types of lists to narrow down what we wanted to study in university and which schools to apply to. If this seems simplistic it’s because it is, but list making has always had a way of creating clarity when I’ve felt overwhelmed.

You can also ask yourself and then answer a series of questions to help gauge exactly how you feel about Tamoxifen and if remaining on the drug is a priority for you. You could even create a numerical sliding scale of importance for your answers, such as allocating a number one for not important to a number two for somewhat important to a number three for very important. Then, when you review the answers to your questions, you’ll be able to see if there is a pattern to your thought process. Take a minute to create a set of Tamoxifen-focused questions that can help you determine if taking the drug for prevention is in your best interest. You may also want to share the results with your medical team for their input. These questions could include:

  • How important is preventing a breast cancer recurrence?
  • How do I feel about having to take Tamoxifen every day for five years (or 10 years or otherwise)?
  • How important is it for me to feel like I am doing something to reduce my risk of future breast cancer?
  • How important is it for me to feel like my pre-cancer self?
  • How important is it to eliminate side effects and/or other risks from my medications?

Remember, at the end of the day only you know what is best for your life and for your health. There are no wrong choices. So thoroughly explore your options and arm yourself with as much information as you can. It can only help to make or break the big decisions, like a Tamoxifen relationship or a Tamoxifen break-up, for you.

Adriana Ermter is a multi award-winning writer and editor. Her work can be read in Figure Skater Fitness and IN Magazine, as well as online at 29Secrets.com, RethinkBreastCancer.ca, Popsugar.com and AmongMen.com. The former Beauty Director for FASHION and Editor-in-Chief for Salon and Childview magazines lives in Toronto with her two very spoiled rescue kittens, Murphy and Olive. You can follow Adriana on Instagram @AdrianaErmter

Photo by Paico Oficial on Unsplash