Getting a cancer diagnosis despite having always taken good care of your health can feel unfair. When treatment causes negative side effects, that feeling of unfairness can grow. That was Kenneth Williams’ experience when he learned he had throat cancer.
Williams, a 58-year-old remodeling contractor from Newcastle, Washington, is an athlete and non-smoker. But early in 2023, he developed a sore throat that took weeks to resolve and left him with a swollen lymph node months later. His wife and “guiding light,” Sue, urged him to have it looked at. His primary care physician ordered an ultrasound and biopsy. The result was a shock: early HPV-related throat cancer.
Human papillomavirus (HPV) is a very common virus with many subtypes, some of which are known to cause cervical and head and neck cancers, including cancer of the throat. Today, a vaccine can help prevent the virus and the risk of cancer.
“I was caught off guard by the diagnosis,” Williams said, “but when the doctors discussed treatment options and the side effects, it got real for me. I was not happy with my options and I wasn’t receptive to chemotherapy or radiation. I just wanted the surgeon to cut it out and be done.”
Traditional radiation especially scared Williams, so Sue encouraged him to get a second opinion.
At that appointment, Williams received similar guidance, with providers recommending chemotherapy and radiation. Surgery was ruled out because his tumor was growing atypically into his body with octopus-like arms. However, he did learn that proton therapy could be an alternative to traditional radiation.
Sue dove into research and liked what she learned: that proton therapy could be more precisely delivered, sparing surrounding healthy tissue and potentially minimizing side effects; and that Fred Hutch Cancer Center offered proton therapy close to home. She set up an appointment with Jay Liao, MD, a head-and-neck specialist at the proton therapy facility. Liao told Williams he was a great candidate for protons.
“Our center has been actively involved in studies evaluating the benefits of proton therapy for cancers of the head and neck for a number of years now,” Liao said. “These studies and others have supported the increasing role for proton radiation therapy in patients such as Mr. Williams, which can help reduce the short- and long-term toxicities of treatment.”
One such study compared traditional X-ray-based radiation and proton radiation for upper throat, or oropharynx, cancers such as Williams’. This study showed that proton therapy is associated with a reduction in high grade toxicities compared to X-ray-based treatment, including swallowing dysfunction, dry mouth, feeding tube dependence and measures of immune suppression. Fred Hutch was a key collaborator in this landmark multicenter randomized trial of more than 400 patients.
“After I met with Dr. Liao, I told Sue, ‘Come hell or high water, I’m doing protons,’” Williams said. “I had connected with another man who’d had radiation for a similar cancer, and I didn’t want to go through what he went through. I was willing to pay out of pocket if insurance balked.”
Williams’ insurance did cover proton therapy, and in February 2024, he started his treatment protocol: 33 proton therapy sessions and six chemotherapy infusions, a combination that’s shown to be effective for Williams’ type of tumor.
The first week of treatment was a challenge. Williams was fitted with a mask to hold his head still during treatment and a tongue block to immobilize his tongue. The combination made him feel like he couldn’t breathe, and he had a small panic attack during the first treatment session. It took him about a week to get used to it.
But the payoff was worth it.
“One of the satisfying aspects of treating squamous cell cancers of the throat, as in Mr. Williams’ case, is that these tumors are usually highly responsive to treatment,” Liao said. “The tumors shrink and begin to disappear during treatment, which we can often assess while examining patients each week. The fact that their cancers are responding and actively disappearing is encouraging for patients who are dealing with very challenging treatment and its associated side effects.”
“At the halfway point scans, Dr. Liao told me, ‘We need to push on, but the tumor may already be gone!’” Williams said.
At that point, he’d had very few side effects and was feeling optimistic. Even though the side effects built over time — fatigue, temporary hair loss, some minor skin discoloration and dry mouth symptoms — Williams felt he came through treatment mostly unscathed.
“This place is unbelievable,” Williams said of Fred Hutch - Proton Therapy. “The staff are fantastic, pleasant and positive. I met some great people and bonded with two other patients — my proton buddies. I feel my experience was as good as it could be.”
Although it took a while to recover from treatment, Williams has returned to his active life, including mountain biking, hiking and climbing. Because of proton therapy, he anticipates a sustained quality of life in the future.
He’s also vigilant about any changes to his health, but his follow-up scans and scopes look great.
“Sue took a picture of my throat during the initial diagnostic scan and it was all grey. You could see the tumor,” Williams said. “When she saw the most recent scan, she jumped up in excitement. It was all pink. There is no sign of the tumor.”
Williams urges other patients who have time to make treatment decisions to get a second opinion and research their options.
“You’ll be more comfortable going into treatment if you’ve prepared and educated yourself,” Williams said. “Sue was instrumental in helping me with this. She made sure I would have the best outcome.”
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