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Our Patient Advocacy Program

Our Patient Advocacy Program

At SCCA Proton Therapy Center, patients considering proton therapy often benefit from talking with people previously treated at the Center to get their perspective of the process, the facility, and side effects. With that in mind, the Center created the Patient Advocacy Program, where patients considering proton radiation therapy can communicate with patients who have had treatment at the Center. The program connects them with potential patients who share a few things in common, most notably the disease site, such as prostate cancer. Usually, the two parties speak via telephone. Research is an integral part of choosing a treatment for cancer, and the process can be empowering, too. Some patients report feeling more confident about their treatment decision after speaking with someone who has been through proton therapy.

Randy is one of those patients. Before he decided on protons to treat his prostate cancer, his urologists in Oregon had advocated for prostatectomy, the surgical option. But he was concerned about the side effects of surgery that his friends had experienced, particularly with urination.

While researching other options he came across the Center’s website, where he discovered helpful information about protons and learned about the Patient Advocate Program from one of the Center’s Patient Navigators. After Randy read prostate cancer survivor stories, he decided he'd like to speak to an advocate. In the end, he spoke to three survivors and was able to ask pointed questions about his concerns - about side effects, insurance, and treatment – and get frank answers in return.

One survivor, in particular, Greg, really tipped the scale for Randy to go with protons.

"He was very open about the potential side effects, SpaceOAR and marker placement, and how he was doing a year out," says Randy. All in all, he felt a lot better after speaking to the advocates than going in blind.

When Randy decided to proceed with proton therapy, he saw Dr. Jonathan Chen. "His bedside manner was great," says Randy. "The whole staff was so professional. I got excellent care and only had slight side effects. I was pleased with my results.”

There was one hiccup with insurance, but his advocate Greg had given him good advice about that, too. “Greg had experience with his insurance company initially denying him proton treatment,” says Randy. “He shared some talking points and insight with me on how I might navigate through a denial. Fortunately, my denial was then overturned.”

He was so impressed with protons that Randy made sure proton therapy was covered through his work’s insurance plan going forward. Since his treatment, he has also become interested in being an advocate for the Center and learning what it’s like to be on the other end of that phone call.

Advocate Dexter (pictured) can speak from experience: "I wanted to become a Patient Advocate to give something back. I remember what it was like. I want to help someone see the decision path clearly."

Dexter had received proton therapy for prostate cancer in 2018. He learned about the Patient Advocacy Program during a Prostate Dinner Club support group at the Center and went to training where he learned to speak of his own experience only, be honest, and not give medical advice.

Since the training, Dexter's spoken to half a dozen potential patients. "Many times, I spoke to both husband and wife. The first time I was nervous and had my training notes in front of me. I've answered a lot of questions and concerns since then. Interestingly, wives tend to ask about side effects, whereas husbands want to know what to expect in terms of the procedure. You go into treatment with dread. If I can eliminate that by talking to patients ahead of time, that's great."

Potential patients of all disease sites are interested in speaking to graduates, so we'd like to train as many graduates as possible. We would be especially grateful for parents or caregivers of childhood cancer patients to become part of the program, as there is a great need there that we'd like to be able to fill. To become a Patient Advocate, please call or email our Patient Services Manager, April Clements, at (206) 306-2038 or april.clements@seattleprotons.org.

If you are interested in speaking to a Patient Advocate about their experience, please contact our Concierge Team at (206) 306-2028 or concierge@seattleprotons.org or contact your Patient Navigator.