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The Tamoxifen Experience: Learning to Expect the Unexpected

Twenty years after her mother passed away from breast cancer, Colleen Boraca learned she had two conditions that increase her chances of developing breast cancer. Her oncologist recommended she take tamoxifen, which may reduce her chances of developing breast cancer.

“Tamoxifen is a medication that can reduce your likelihood of developing breast cancer by about 50%.” Fewer statements could capture my attention more. I learned this shocking yet exciting news during my first meeting with an oncologist. I had recently had a mass removed from my left breast, and the biopsy showed that I had two conditions which increase one’s chances of developing breast cancer: LCIS (lobular carcinoma in situ) and ADH (atypical ductal hyperplasia). It was recommended that I meet with an oncologist to discuss risk-reduction options. Other than a double mastectomy, I did not know there were other risk-reduction measures, and I wanted to learn about every one of them.

Preventing breast cancer before it starts is a huge opportunity area for breast cancer research. Komen Scientific Advisory Board member Dr. Kornelia Polyak is using her Komen research grant to study breast cancer “progenitor cells,” the cells that will go on to become breast cancer. Her goal is to find ways to prevent these cells from turning into breast cancer. Read more on the Komen Blog.

Before the oncologist could finish the list of tamoxifen’s possible side effects, I yelled out, “Sold.” I was thrilled at the idea of reducing my risk of developing breast cancer by about 50%. I always knew I was high-risk, but the biopsy results confirmed it. The idea that I could be proactive was new and exciting to me (you can read my tips here).

I was familiar with tamoxifen before this meeting. My mother took tamoxifen after she finished her first round of chemotherapy and radiation to prevent a recurrence. Her medical records showed that she “tolerated it well,” but it did not prevent a diagnosis of metastatic breast cancer.

Until this appointment, I had no idea tamoxifen was used to reduce risk for those who are high risk for breast cancer. There were many reasons I was a strong candidate to take it. First, tamoxifen is a good option for pre-menopausal women, like me. Second, my insurance completely covers the cost of it so it would not financially impact my family. Third, while some women take it for up to 10 years, five years was the length recommended for me.

I decided to start my five years on a date I would remember, so I took my first tamoxifen pill on my son’s 12th birthday. During the first six months, I experienced no side effects. I was convinced I would sail through the five years with ease. About seven months into the protocol, things changed. I woke up one day unable to bend my knees. I felt like I was walking through mud. It was terrifying and since we were in the middle of the COVID lockdown, going to the emergency room for something non-life-threatening was not an option.

I remember being advised to assume that anything wrong with me during the five years would likely be due to tamoxifen. Sure enough, I found out that joint and muscle stiffness are common side effects. The oncologist suggested that I take Vitamin D and magnesium as well as drink tonic water (without gin) every night. A few weeks later, I started physical therapy. It took four months to get back to normal. A similar incident occurred about two years later. This time, I was able to identify the problem quickly and had the tools to handle the situation more effectively.

The side effects were not just physical. A year into taking tamoxifen, I noticed a change in my mood. I became more irritable, constantly snapping at my husband and children. Simple tasks became overwhelming and crying spells were my new normal. I started seeing a therapist who taught me coping tools. I learned about the importance of exercise and began working out every morning which helps control the symptoms. If I miss a day of exercise, I notice and so do all those around me!

I have learned a lot while taking tamoxifen and want to share the following advice:

  • Expect side effects. Most people I know who take tamoxifen experience side effects. Some are nominal while others are not. Mine have been nominal compared to those experienced by others. Some side effects start shortly after taking tamoxifen while others may appear years after one’s first pill. The side effects are unpredictable. I purchased multiple cardigans in preparation for all my upcoming hot flashes but still have not had a single one. The good news is that much can be done for side effects. Oncologists can recommend vitamins, supplements or medications to help. They may suggest changing to a different manufacturer of one’s tamoxifen which could also help reduce side effects.
  • Assemble a support team. Before you start tamoxifen, think about whose support could help you throughout your journey. My oncologist has a tremendous bedside manner and is responsive to my concerns and freak-out sessions. The physical therapist I work with has treated multiple patients taking tamoxifen and is familiar with how it impacts one’s muscles and joints. Research mental health resources available to you in the event the mood symptoms become overwhelming. Nothing is more helpful than finding a community of others taking tamoxifen. I am part of the “Tamoxifen—I’m Having Side Effects” Facebook group. Most of the members are taking tamoxifen after undergoing chemotherapy and radiation, and their situations are different from mine. However, it has been an invaluable place to ask questions, learn, laugh, commiserate, inspire and truly see how the people taking this medication are total warriors.
  • Attend regular appointments. Gone are the days of only attending annual physicals. While on tamoxifen, there are multiple appointments that must be kept. I have bloodwork done 2-4 times per year and am closely monitored by my oncologist. My regular mammograms continue in addition to examinations with the breast surgeon who removed my mass. Tamoxifen can impact eyesight, so I see optometrists and ophthalmologists to ensure my eyes are healthy. Annual physicals with ob/gyns are increasingly important as tamoxifen can cause uterine or endometrial cancer. Weekly therapy sessions are needed when my mood symptoms impact my functioning. Annual physicals with my primary care physician are still important, but now my calendar is busier!
  • Be open-minded as plans can change. The original plan was for me to take 20 mg of tamoxifen for five years. A few months ago, this plan changed. Despite exercising and changing my diet, the mood side effects were overwhelming. I remember looking at my three children one day and thinking that they deserve a mother who does not constantly cry or snap at them. Only certain antidepressants do not interfere with tamoxifen, and those come with intense side effects. As I made it through almost four years at 20 mg, my oncologist suggested we reduce the dose to 10 mg for the final year. This would still result in the 50% reduction. Although I initially felt like a failure, it has been a phenomenal decision. Deciding how many side effects one can handle is personal, and it is not a sign of weakness to adjust the original plan.
  • Plan for the end. My last pill will be on my son’s 17th birthday. During his birthday celebration, I will think about how tamoxifen will hopefully help me attend more milestones in my children’s lives, milestones my mother missed. I have other “end-of-tamoxifen” festivities in mind. New Orleans is my favorite place to celebrate anything, so I may travel there or somewhere else warm and festive. I may also fulfill my lifelong goal of owning a baby grand piano. I still have a year left to plan.

Taking tamoxifen has been a wild ride, but I would go through it all again in a heartbeat to prevent breast cancer. I would hold off on buying the cardigans.

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.