My rare granular cell cancer treatment: Why I chose MD Anderson

In May 2017, I was getting ready for the release of my first book, preparing to move into a new house, and looking forward to a 10-day road trip and a celebration of my mother’s 90th birthday at summer’s end.

Instead, a tiny growth behind my ear derailed all my plans and took me to Houston, where I spent the summer undergoing surgery and proton therapy at MD Anderson for an extremely rare and aggressive cancer.

My granular cell cancer diagnosis

I’d noticed the bump behind my left ear a few months earlier. It didn’t hurt or itch. And it didn’t bleed. It was in the crevice where the ear meets the skull. Unsure if it was cartilage growth, I reached out to my internist. She thought it might be a sebaceous cyst. I could leave it or have it removed, she said.

I chose to have it removed. But I was shocked when the lab report came back indicating I had a rare granular cell cancer.

Learning the full extent of my cancer

I could find very little online about granular cell cancer, and I’ve since learned that it’s so rare only a handful of case studies have been published on it. I consulted a local oncologist, who ordered a full-body PET scan to determine if the cancer had metastasized from elsewhere in my body.

Waiting for those results was perhaps the scariest part of my entire cancer experience. Thankfully, they pointed only to that one area behind my ear.

Why I went to MD Anderson

Due to the rarity of my cancer, I chose to leave Indiana and head to MD Anderson, whose head and neck specialists would be more familiar with it. MD Anderson’s extensive research, and its breadth and depth of experience, also offered me hope.

I flew to Houston on Memorial Day, just 24 hours after moving into my new home. My daughter, 24, and I stayed at MD Anderson for five days. My team of physicians, led by world-renowned head and neck surgeon Dr. Ehab Hanna, recommended surgery to ensure that all the cancerous tissue had been removed, followed by a six-week course of proton therapy under Dr. G. Brandon Gunn at the MD Anderson Proton Therapy Center.

My tumor was tiny, but it was sitting on a facial nerve. And nerve pathways are superhighways for the spread of cancer cells, so radiation was a must. Dr. Gunn decided pencil-beam proton therapy was the best fit for that delicate area. It is precise to within millimeters, goes only to the edge of the tumor and no deeper, and leaves no exit radiation trail. That was important, as it would limit damage to the surrounding tissues.

Exceeding my expectations

My surgery took place on June 15, 2017, and my last proton therapy treatment was on Aug. 25, 2017. I’ve been in remission ever since, and have returned to Houston every three months for check-ups. The only lingering side effects I have now are a stiff jaw, a numb ear and a slightly compromised sense of taste. Even the hair I lost — which gave me a punk-like, half-shaved-head look that I liked — is slowly growing back. So, things could have been much worse.

Today, I cannot speak highly enough about my experience at MD Anderson. I sought out a world-renowned cancer center and still wound up at a place that exceeded my expectations. Every department worked seamlessly with the next, and every employee — from the chief surgeon to the valet parking attendant — was focused on my physical and mental well-being. That set the bar incredibly high for all of the other cancer centers out there.

‘The right place to be’

Since my time in Houston, I’ve spoken with several patients who underwent treatment unsuccessfully near their homes before making their way to MD Anderson. They all regretted not going there first.

I’ve also accompanied family members with cancer to local appointments and have been very disappointed in the quality of care they’ve received: physicians who weren’t interested in explaining their particular disease or its treatment, clinic staff who were emotionally cold and only served to increase a patient’s fear, specialists who practiced in different locations and didn’t communicate with one another, and procedures scattered across the city in different facilities.

My summer may not have turned out as I originally planned, but in the end, I couldn’t have been at a better place. It can be overwhelming and exhausting to be surrounded by so much cancer, but because I went to MD Anderson, I still got to celebrate my mother’s 90^th birthday. We celebrated her life — and with the help of MD Anderson, mine.

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