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Jimmy Buffett died from a rare skin cancer. I diagnosed my patient with the same type. | Expert Opinion

Merkel cell carcinoma is a rare and aggressive cancer.

After even just one treatment, Betty’s tumor shrunk dramatically, and after four treatments, it seemed to vanish completely.
After even just one treatment, Betty’s tumor shrunk dramatically, and after four treatments, it seemed to vanish completely.Read moreCourtesy of Jules Lipoff

The death of “Margaritaville” singer Jimmy Buffett in September cast a spotlight on a rare and aggressive skin cancer, Merkel cell carcinoma, and pointed to the need for more public awareness about the disease.

As a dermatologist, I know that skin cancer must be taken seriously. Beyond checks for any new or changing lesions, we recommend skin cancer screenings for many people — especially people with a previous history of skin cancer or a family history of melanoma. Anyone with many or atypical moles, or other risk factors like a compromised immune system or extensive sun tanning, should also consider regular skin cancer screenings.

Fortunately, most skin cancers, such as basal cell carcinoma, are not life-threatening. And we can usually intervene early to prevent the spread of more concerning cancers, such as squamous cell carcinomas and melanomas.

However, Merkel cell carcinoma, which took Buffett’s life, is a disease that all of us dermatologists fear. It is a nasty diagnosis with a survival rate much worse than melanoma, estimated three to five times as likely to be deadly. What makes Merkel cell carcinomas dangerous is that they tend to spread quickly to other parts of the body and recur after any surgical treatments. According to the American Cancer Society, about 2,000 cases are diagnosed annually, mostly older white patients, more men than women, and mostly over the age of 70.

Though I have always known about Merkel cell carcinoma, in my 14 years of practicing dermatology, I had never diagnosed one until this year.

Merkel cell carcinoma symptoms

Betty, 85, grew up in Manayunk as one of eight children and has been a fixture in Roxborough ever since. She had worked at Acme since she was 16, starting as a cashier and working her way up into management. She is boisterous and chatty, always busy trying to help other people.

“I’m always on the go,” she told me. She’s happy to tell long stories with the energy of someone half her age.

I met Betty in January for a yearly skin check that was normal. She came back in March, when she started to notice a growth by her left eyebrow and eyelid. At first, it appeared to be a small cyst, and so we scheduled her for another appointment to do an excision. But within only three weeks, it more than tripled in size and turned purple — I was worried. I moved up her appointment and we did a biopsy, sending it to pathology marked “rule out Merkel cell carcinoma.” Unfortunately, that was her diagnosis.

As a former faculty member, I was able to connect Betty with the Penn Medicine oncology team skilled in managing such complex cases. Given the growth, size, and location, Betty had to make a difficult choice — attempt an 8-hour surgical removal that would mean losing her left eye, or try an experimental immunotherapy that had helped in some cases. The cancer was already so large that Betty could no longer open her eye. She was accustomed to being independent, and now she couldn’t even drive.

Treatment options for Merkel cell carcinoma

Betty and I had several long conversations about what she should do. “I’ve lived a good life, I never expected to live this long anyway, and I just want to make the most of whatever time I have left,” she told me, with surprising clearheadedness. Betty said she tries to not get overly upset because “life has so many hurdles.”

She was confident that surgery would be too much for her, and she went with the oncology team’s recommendation to try the experimental immunotherapy, a PD-1 inhibitor called pembrolizumab.

PD-1 inhibitors are a newer class of medications that are more targeted than traditional chemotherapies and have made a real impact in the treatment of many cancers including melanoma, where it is a mainstay. It remains more experimental for Merkel cell carcinoma.

Led by Penn oncologist Tara Mitchell, Betty’s care team tried several immunotherapy infusions. Her niece drove her to the appointments.

The results were incredible and far exceeded my modest hopes. After even just one treatment, Betty’s tumor shrunk dramatically, and after four treatments, it seemed to vanish completely. It was, frankly, and I say this as a doctor, magical. Betty continues to do well with additional infusions and follow up with her oncology team. She will continue to see me for routine skin checks.

Betty told me she doesn’t watch much television, but she always watches the news. When Buffett’s diagnosis came out, she thought, “How many people even know about it? Melanoma, everybody knows about it. But nobody knows about Merkel cell.”

Betty had a fortunate response to treatment compared to Buffett.

“I absolutely feel lucky,” she told me. “I wish he had the same luck I did.”

I asked Betty recently what she takes away from her experience and what she wants others to know. “There’s people I know who, if they have a lump, they are afraid to go to the doctor and be diagnosed. And it could be simple. I’ve had friends with basal cell carcinoma, which is easy to treat,” she said. She hopes her experience inspires others to get skin checks. Her advice: “Go get a skin check, don’t be afraid of the doctor!’”

Jules Lipoff is a board-certified dermatologist in Manayunk/Roxborough, and a clinical associate professor (adjunct) in the department of dermatology at Temple University’s Lewis Katz School of Medicine.