I had breast cancer twice. My first time I made an educated choice not to start aromatase inhibitors (AIs). With early stage premenopausal cancer, overall survival rates were the same, on or off AIs. (There is 13% increased chance of reoccurrence off AIs). I chose survival rates and lifestyle. I am very active and wanted to avoid muscle and joint aches, osteoporosis and possible diabetes.
I felt like I was in Vegas, spinning in Russian Roulette. I chose the wrong number and lost. Two years later, I grew another breast cancer on the same side, in breast tissue remaining after my mastectomy. Now there were two metastases in axillary lymph nodes. My survival rates markedly declined. I had difficult choices to try to improve my odds.
My surgeon’s tumor board had a pow wow and discussed whether to undergo adjuvant chemotherapy. They had no recommendations, being split 50/50. They told me it was my decision, which they would support either way. Some believed all I needed was AIs. They implied I had caused my second cancer through poor choices two years earlier. This hurt, and I was dumbfounded what I should do. Luckily, I came prepared as a warrior, reading the literature extensively about estrogen receptor positive recurrent cancers. I sought more tests which could inform our choice. My surgeon became frazzled, saying no to all of my requests, showing frustration that I asked for a different approach. In her mind, the second tumor was clearly the same as the first one!
No patient should have to decide whether or not to undergo chemotherapy on their own. Was the tumor the same? How did we know it would or would not respond to AIs? Was I at fault? I had several considered discussions with my oncologist, who said if she disagreed strongly with my first choice she would voice it. Luckily, my oncologist also wanted more information to make the best choice with the reoccurrence. She ordered genetic testing, despite the $4000 price tag. The second tumor was different and more aggressive than the first. She sent a specific marker from studies, which showed my tumor was not easily responding to AIs.
I’m less than six months out from all treatments, including chemotherapy. Every day, I live not knowing my long-term cancer status. But I do know choosing chemotherapy gives me the best chance of living cancer-free. Thank you Dr. B!
Deborah Kasman
Azusa, California