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

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

Jonas Johnson presses his hand on Edward Christopher鈥檚 neck. The exami91porn视频 room at the is chilly on this June morning as Johnson, chair of the 91porn视频 , glides his fingers along the left side of Christopher鈥檚 throat.

鈥淵our skin is stiff,鈥 Johnson says. 鈥淪car tissue doesn鈥檛 go away.鈥

Five years ago, Christopher was diagnosed with human papillomavirus (HPV) positive cancer on the base of his tongue, left tonsil聽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.聽

When he completed the treatment, he posted a picture on Facebook holding a sign that read 鈥渃ancer free!鈥 That night, he and his family celebrated with dinner at an Italian restaurant.聽

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

He credits Marci Lee Nilsen, a nurse who is an assistant professor in Pitt鈥檚 , 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鈥攄ifficulty swallowing鈥攁nd trismus, commonly known as lockjaw. They might experience a loss of taste, tooth decay, dry mouth聽and mouth sores. The side effects from radiation and chemotherapy can often cause patients to struggle to talk, hear聽and sleep, as well. The combi91porn视频 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.聽聽

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

Survivorship clinics for head and neck cancer are sprouting up across the country. Some of those clinics have more than a few specialists. UPMC鈥檚 clinic patients see an otolaryngologist, audiologist, dentist, speech pathologist聽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聽before聽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聽or physical therapist.聽 聽

Historically, the struggles of head and neck cancer survivors have been approached as an afterthought by many hospitals and primary care physicians. That鈥檚 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鈥檚 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.聽

鈥淚鈥檝e reinvented myself,鈥 he says. 鈥淚 say to my residents:聽Don鈥檛 think I鈥檝e repudiated the last 40 years of my career. I still believe in surgery. But I鈥檝e embraced the notion that we must recognize the trouble we cause (treating cancer), and we have to help people with it.鈥澛

There鈥檚 more to this story. about Johnson and Nilsen鈥檚 partnership and more patients benefiting from their work.