Survivorship Clinic Helps Patients With What Comes After Head and Neck Cancer

Marci Lee Nilsen and Jonas JohnsonThis story, written by Gavin Jenkins, is excerpted from the fall 2019 issue of Pitt Med magazine.

Jonas Johnson presses his hand on Edward Christopher’s neck. The examination room at the UPMC Head and Neck Cancer Survivorship Clinic is chilly on this June morning as Johnson, chair of the University of Pittsburgh Department of Otolaryngology, glides his fingers along the left side of Christopher’s throat.

“Your skin is stiff,” Johnson says. “Scar tissue doesn’t go away.”

Five years ago, Christopher was diagnosed with human papillomavirus (HPV) positive cancer on the base of his tongue, left tonsil and the lymph nodes on the left side of his neck. After undergoing surgery to remove the tumors, he received radiation treatment and chemotherapy, followed by another procedure to remove his lymph nodes. 

pink cover of Pitt Med magazine, featuring a doctor on unicycleWhen he completed the treatment, he posted a picture on Facebook holding a sign that read “cancer free!” That night, he and his family celebrated with dinner at an Italian restaurant. 

Christopher felt lucky to be alive and grateful to Pitt doctors. He had no idea how difficult the years to come would be. 

He credits Marci Lee Nilsen, a nurse who is an assistant professor in Pitt’s School of Nursing, with opening his eyes.

In 2016, Johnson and Nilsen created the Survivorship Clinic to help patients like Christopher improve their quality of life after beating head and neck cancer. Most patients grapple with dysphagia—difficulty swallowing—and trismus, commonly known as lockjaw. They might experience a loss of taste, tooth decay, dry mouth and mouth sores. The side effects from radiation and chemotherapy can often cause patients to struggle to talk, hear and sleep, as well. The combination of these treatments with surgery can also lead to mobility issues; many patients end up on disability. Insomnia and sleep apnea can exacerbate anxiety and depression, which also are common issues.  

Getting care for these conditions can place a financial strain on patients who have already spent tens of thousands of dollars to overcome cancer. 

Survivorship clinics for head and neck cancer are sprouting up across the country. Some of those clinics have more than a few specialists. UPMC’s clinic patients see an otolaryngologist, audiologist, dentist, speech pathologist and physical therapist in one day. And unlike any other survivorship clinic in the United States, they are charged just one co-pay.

The Survivorship Clinic also sets itself apart by how it monitors patients from the start. Nilsen and Johnson meet with patients before they receive radiation and chemotherapy, and then again a month after treatment is completed. After that, patients visit the clinic at least once a year, and depending on their needs, Johnson and Nilsen will coordinate with the appropriate primary care physician, dentist or physical therapist.   

Historically, the struggles of head and neck cancer survivors have been approached as an afterthought by many hospitals and primary care physicians. That’s changing as providers recognize the fallout from treatments, which can be lifesaving but also life hobbling. Johnson and Nilsen have seen more than a thousand patients in their three years at UPMC’s Survivorship Clinic. Their work has highlighted the importance of long-term care.

For Johnson, a renowned head and neck cancer surgeon who has been with Pitt since 1977, the Survivorship Clinic represents a new chapter in his career. 

“I’ve reinvented myself,” he says. “I say to my residents: Don’t think I’ve repudiated the last 40 years of my career. I still believe in surgery. But I’ve embraced the notion that we must recognize the trouble we cause (treating cancer), and we have to help people with it.” 

There’s more to this story. Continue reading about Johnson and Nilsen’s partnership and more patients benefiting from their work.