Jillian Benstein

By proton-admin | April 16, 2020

“I feel fortunate that I could get proton therapy and firmly believe everyone should have access to it if their provider recommends it.”

In 2018, I was 38 and living my daily life like millions of other women, raising two great kids, and working full time. However, I kept feeling like something wasn’t right in my breast. My medical team was skeptical that anything was wrong because of my age. It also didn’t help that my insurance didn’t cover mammograms because I was under 40. I finally told them that I would pay myself so I could get the test.

Unfortunately, my instincts were right. After a mammogram and biopsy, I was diagnosed with invasive lobular breast cancer, stage 2B. This rare, tricky type of cancer grows like a tree branch, so it often does not feel the same as a typical ductal tumor upon breast exam. I’m so glad that I listened to my body and pushed my medical team to investigate. Unfortunately, after my surgery, I learned that the cancer had already spread to my lymph nodes. This meant a long road was ahead of heavy dose chemotherapy and radiation.

I shaved my head and prepped for chemo, but was nervous about regular radiation therapy. That wariness, made me ask more questions like, was there a better treatment for me? I spoke with my physician in detail about options and sought recommendations. When I finally learned about proton therapy, I knew it was the right treatment for me. I worked with a radiation oncologist, Dr. Michael Eblan. He encouraged me to join a clinical trial testing photon radiation versus proton therapy in breast cancer patients.

He warned me early on that it would be a struggle to get insurance coverage. As he predicted, insurance denied proton therapy twice. Dr. Eblan and his staff were terrific, offering guidance, and helping with paperwork. Even with their help, I had to wait two months to get insurance approval. This delay was pretty stressful as we knew there was a limited time I could wait for the radiation to be effective. I was dealing with intense side effects from chemo and, at the same time fighting for my right to receive prescribed medical treatment. That doesn’t seem right.

Thanks to Dr. Eblan’s numerous efforts, I received approval just under the wire. I am grateful to be on the other side of it. I am so relieved that I paid attention to my body and the inner voice telling me to continue to seek out treatment options. I feel fortunate that I could get proton therapy and firmly believe everyone should have access to it if their provider recommends it. Along with a fellow advocate, I have talked to our legislators to inform them about how protons helped me. It’s hard enough to deal with cancer on top of our usual life responsibilities. Now’s the time for insurance companies to step up and stop preventing patients from getting the medical treatment they need.