What I Wish I Knew: The severity of side effects

Breast cancer is one of the most commonly diagnosed cancers in American women. But men can get it, too. In fact, 2,670 men will be diagnosed with breast cancer in 2019. A diagnosis can leave you feeling unprepared for health and treatment decisions you have to make. It can also put unexpected stress on your everyday life, your family, and your job.

At LBBC, we know one of the best ways to learn about living with breast cancer is by hearing from others who have been there. This blog is part of a series called What I Wish I Knew, which features people diagnosed with early-stage breast cancer in the past who want to share their knowledge with those who are newly diagnosed. What I Wish I Knew will update once a month.

I elected to have a bilateral mastectomy on October 4 at Suburban Community Hospital, in Norristown, Pennsylvania. Going into surgery, I was told I would most likely not need additional treatment since the cancer was caught early, but I would need to be on the drug tamoxifen for 10 years. To me, that sounded like a win already.

I remember having a conversation with my surgeon, Archit A. Naik, MD, MBA, the morning of my surgery, to express my nervousness. Dr. Naik told me, “This is the easy part.” At that time, I had no idea what he meant, since I already knew that I would not need additional surgeries or treatments. I thought, “How can going through a major surgery be the easy part?”

My surgery was a success and my margins came back clear. The cancer had not spread to my lymph nodes. I thought that this was going to be easy, and thought I dodged a bullet.

Three weeks after my surgery I had my first follow-up oncology appointment with Kevin R. Fox, MD, at the University of Pennsylvania. At that time, Dr. Fox prescribed tamoxifen. I immediately started my treatments. He did warn me of possible side effects, but since I was young and in good physical shape I did not take the possibility seriously. Also, there wasn’t much data on men with breast cancer and how tamoxifen would affect a 41-year-old male.

Approximately 30 days after taking tamoxifen the side effects started. I suffered pretty much every side effect that a person could expect! Even though I was told about the effects that the small pill could have on me, I was not mentally prepared. At the time of my diagnosis and surgery, I had also started my own consulting firm, so I had the stress of being an entrepreneur while battling cancer. With the stress of the side effects, along with my new career, things couldn’t have been harder for me. I finally realized what Dr. Naik meant by saying my surgery was the “easy part.”

I tried taking tamoxifen at different times of the day, and with or without food. Unfortunately, the changes did not help relieve the side effects. With the guidance of my oncologist, we decided to stop tamoxifen and switch to the drug anastrozole (Arimidex). The side effects did not go away! I experienced the same side effects I had on tamoxifen. I still had the debilitating joint pain, weight gain, intense mood swings, and hot flashes.

After only a few months on anastrozole, Dr. Fox and I decided to stop all treatments and just monitor my health every 6 months. Since my Oncotype DX and MammaPrint scores were low, we decided that it wasn’t worth compromising my quality of life with my low chance of recurrence. After 30 days, all my side effects dissipated. I have been cancer-free for over two-and-a-half years.

I wish I had spoken to a certified nutritionist and therapist that specialized in cancer patients. I believe the information and support could have helped ease the side effects, physically and mentally. I also wish that I had asked what Dr. Naik meant by saying my mastectomy was the “easy part.” A good friend of mine recently taught me to be your own advocate and ask for clarity. I wish I had this advice back then.

If you are recently diagnosed and would like to learn more, be sure to check out our Guide for the Newly Diagnosed.