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Proton Patients Share Their Stories

Proton Patients Share Their Stories

Nearly 2,000 people have received treatment at SCCA Proton Therapy Center as part of their care following a cancer diagnosis. The Pacific Northwest is fortunate to have protons available to those patients for whom it‘s the best clinical treatment option.

Most people, and their employers, understandably assume their health insurance will cover the cost of proton radiation, but that’s not always the case. Insurance denials are an unfortunate aspect of the healthcare landscape. While there is a pre-authorization process in place for proton therapy, it can take several weeks to get it sorted out, which can take an emotional toll at an already stressful time. And sometimes the treatment is denied coverage.

Recently, three graduates from SCCA Proton Therapy Center got together and shared their personal stories.

“I didn’t take a day of sick time,” said Dave Alberts, a firefighter in Snohomish County. “My appointments were in the morning and there were no side effects. The only inconvenience was needing to be at the center for 44 appointments. I had more exhaustion from dealing with the anxiety of the insurance company than I did with side effects from the treatment.”

His appeal was ultimately denied, but for Dave, it was about the quality of life. He has a lot more important things to do, like spending time with family and showing the other firefighters he’s still in the best shape.

“We do a physical challenge at the fire station. I am the oldest one in the group and I still beat everyone else. I like the competition. I beat them last year when I had cancer.”

Six years ago, David Heyting had a seizure. An aid car rushed him to UW Medical Center where they discovered a massive tumor in his head. Surgery removed 90% of it and then he had 12 months of chemotherapy. This was before Seattle had a proton therapy center.  

He went in every six months to see if anything had changed. Then, in 2015, the tumor had in fact changed. David did not want to do another round of chemo. Luckily, the SCCA Proton Therapy Center had opened in Seattle. SCCA and UW were connected so it was seamless and easy.

“I did a lot of research and I chose not to have traditional radiation, against my doctor’s suggestion,” David said. “Most people with my type of cancer are dead within five years, and there’s no exact cure. But I am optimistic. I came for treatment at lunch. It was pretty easy. There was no impact on my working life and I didn’t feel that tired. Compared to chemo, it was a walk in the park. I was lucky compared to a lot of people.”  

But David does wish more people knew about the option.

“I know for a fact, doctors don’t refer here because it is not in their network. They don’t even acknowledge it exists. I’ve met people who’ve had traditional radiation and 10-12 years later they have developed a secondary cancer. People need to know this exists.”  It’s a good idea to speak to a radiation oncologist who knows about proton therapy.

While his treatment was eventually approved after an initial denial, he was frustrated it was even in question, since his insurer covers his type of cancer for pediatric patients.

“If I was 18 it would have been approved, because of long term impact. How about when I am 37?”  

Marcia McNannay was diagnosed with breast cancer in 2014. She went through surgery, chemotherapy and radiation. She lives in a rural area of Eastern Washington and she had never heard of proton therapy.

The aggressive cancer came back in 2017.

“I knew I had a 50/50 chance of having it return. I understood the terminology this time around and took control. I knew right away I wanted a second opinion and came to SCCA and learned about proton therapy. Working with positive doctors makes you feel better.”

The tumor was resistant to chemotherapy and a second round of radiation was not an option. Once you’ve had traditional radiation, you can’t get it again, but protons allow most patients to have an additional course.

“Every day, when I walked in the door, you just felt like you were family. Everyone was in a good mood, they were positive and wanted to help. I had no idea my biggest battle would be with the insurance company.”

Dave, David and Marcia now know better than most: insurance plans are complicated. No two are alike. Employers and individuals need to research what’s covered and what’s not covered so they aren’t surprised if they find themselves in need of lifesaving treatment. They would all encourage you to take the time to review your health plans today.

If you or a loved one are in need of radiation, be sure to speak with a radiation oncologist familiar with proton therapy. To learn more, go to the Alliance for Proton Therapy Access

For the full interview, click here.