Some nerdy science news! Ever since my early breast cancer diagnosis in 2020, I’ve participated in a number of scientific studies and new medical treatments. Last week I began a new one after one of my doctors suggested it as a way to help support my body’s ongoing healing.
I had my bilateral mastectomy in October 2020. When the pathology was done, the research team found that lymph nodes in my left breast were positive for cancer cells even though they had biopsied negative. Additionally, I had something called “vascular invasion” on my left side. This means a few pesky breast cancer cells were trying to make their way out of my breast tissue by traveling through my blood vessels and lymphatic system. I was fortunate that my surgery removed them and brought their journey to an end before they could do any more damage. We also did a second surgery under my left arm 2 weeks after my mastectomy to test those lymph nodes. Thankfully, all of the lymph nodes under my left arm were cancer-free (just like the ones under my right arm!) However, there was a very slight possibility that one or two of those cancer cells on the left side got away without us knowing. On the off chance that this happened, my radiation oncology team suggested radiation just on the left side to ensure we stopped them. (There was no vascular invasion on my right side, so radiation on the right side wasn’t needed.) Also, there was one lymph node very close to my lung and heart on the left side that was a tiny bit enlarged. Because of its location near my heart and lung, it was too risky to biopsy or remove it. So, radiation would be used to kill any cancer cells that might be trying to hang out in that lymph node.
In total, I had 6 weeks of radiation, 5 days each week, for a total of 30 radiation sessions. The last 5 sessions were a “boost” week meaning the radiation was stepped up to a higher level and aimed right at that lymph node near my heart and lung. Though I’m grateful for these lifesaving treatments, the side effects were a bit rough. I got a 3rd degree burn the size of a baseball in the center of my chest and it caused the muscles, ligaments, and tendons on the left side to tighten up considerably. Though I’ve regained almost all of my mobility in my upper body through a lot of hard work, those muscles, ligaments, and tendons on my left side are still very tight and my left shoulder rolls in very slightly as a result. This condition is called radiation fibrosis.
All of my medical cancer care is through NYU Langone Health in New York City. They recently hired Dr. Yingrong Zhu, a physiatrist who specializes in breast cancer survivorship. A physiatrist, also known as a physical medicine and rehabilitation (PM&R) physician, is a medical doctor specializing in diagnosing and treating conditions affecting the musculoskeletal system, nervous system, and other bodily functions, with the goal of restoring function and improving quality of life.
I went to see Dr. Zhu this week and had a fantastic experience. She explained that the effects of radiation can persist for 20 years – I had no idea! – so this issues I’m having with tightness deserve attention. She also explained that because I work out and stretch every day (including stretches given to me by my physical therapy team right after my active treatment), more physical therapy wasn’t likely to help me. However, she told me about some small scientific studies that show a 6-month course of vitamin E 1000 i.u. supplements combined with a medication called pentoxifylline ER can help release tension in muscles affected by radiation fibrosis and lead to increased mobility.
Together, Dr. Zhu and I decided it was worth me trying this new medication combo. The side effects are minimal, and she’s had a few other patients who have benefitted from it. It’s too soon to tell if it will help me, but I’m always willing to try anything that helps support my health and well-being. I also see this as an opportunity to not only help myself, but also to help others by sharing my experience with this new treatment. I’m excited about the possibility of regaining more of my mobility and improving my quality of life. Here’s hoping that someday I’ll be able to do my beloved yoga backbends again!
Christa Avampato 