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In September 2023, I lost my uncle to skin cancer. My uncle “Scooby” was 80 years old. He had been an outdoorsman, athletic and a lover of all things Colorado since he moved to the Vail Valley in the 1970s. He grew up in upstate New York where he learned to ski and loved to spend time on the lake rowing, swimming and doing all things outside. When he moved out West, he fell in love with the mountains and was a ski patrolman at Vail, Beaver Creek and Arrowhead.
As a kid, I remember him doing anything possible on the snow, including snowboarding, monoboarding (when those were popular!) and cross-country skiing. He and my aunt would race Mountain Man competitions at Vail and escape to Lake Powell as frequently as possible with my cousins. I grew up in Maine and only got to see my uncle in the summers as a kid. After moving to Colorado, my husband and I spent a lot of time with Uncle Scooby and he instilled his reverence for routine exercise, outdoor activities and his love of the mountains. We began an annual Thanksgiving trip to Moab to ride bikes and spent vacations in Grand Junction, Zion and Bryce together.
Scooby’s Merkel Cell Carcinoma Diagnosis
Scooby was diagnosed with a rare form of skin cancer called Merkel Cell Carcinoma. Merkel Cell Carcinoma gained a lot of press with the recent passing of Jimmy Buffet, who also succumbed to the cancer. Merkel Cell Carcinoma is extremely rare. It occurs in 0.23 per 100,000 people in Caucasians. Compare this to Melanoma, which can also be a deadly form of skin cancer but occurs in 21.2 per 100,000 people in the US. Merkel Cell Carcinoma is estimated to be about 80 times more deadly than Melanoma.
Merk Cell Carcinoma occurs most often in Caucasian males, over age 50 with a history of heavy sun exposure. The lesion on the skin typically occurs as a red nodule or bump. It’s often shiny, painless and doesn’t usually bother people in any way but tends to increase in size quickly. It’s most commonly seen on the scalp or face or other sun exposed areas. I have been working in dermatology for 10 years and
I’ve only diagnosed Merkel Cell Carcinoma a few times. In comparison, I find a melanoma on patients about 2-6 times per month. If a Merkel Cell Carcinoma spreads into the body, we have very limited treatment options. The five-year survival rate for a person with Merkel Cell Carcinoma is about 45%.
Scooby’s Merkel Cell Carcinoma did not have a “primary site”. This means he never had a skin lesion. It just suddenly appeared in his lymph nodes as an enlarged bump, which he felt in his armpit in the spring of 2020 just after Covid hit. (We don’t have a good explanation for why this happens in some people.) This wasn’t an ideal time to get such a serious diagnosis, but he was quickly started on a type of immunotherapy, called Keytruda or pembrolizumab. When you are diagnosed with a skin cancer that has already spread internally, the standard for treatment is immunotherapy, specifically check point inhibitors. The job of the check point inhibitor is to prevent the immune system from creating a forceful response to the healthy cells and encourages T cells in the body to destroy the cancer cells. He responded to the immunotherapy very well at first and had few side effects.
Merkel Cell Treatment to Prolong and Improve Life
Unfortunately, Merkel Cell Carcinoma is a tricky type of cancer and there is no cure once it spreads. Immunotherapy adds time to a person’s life and allows them to live with a high quality of life. Scooby did just that. He was able to continue to go to New York to his cabin in the summer and row his boat every morning. He skied every winter up until his passing and continued to bike. The Keytruda showed evidence of not being as effective after nearly a year, so he decided to try a trial out of UC Health in Denver.
He had a few choices for trials, and I read the trial documents for him and translated the medical jargon into language he could understand. He entered a trial that was a combination of Keytruda and another drug, but it didn’t go well, and he had a lot of negative side effects. He discontinued the trial early but did have some success because his cancer shrunk, and he recovered from all the side effects. At that point, he didn’t have many additional options but enjoyed about a year with no medications.
In the spring of 2023, his cancer had spread, and he started to develop a lot of consequences of the disease. His goal was to get back to New York for the summer. He was able to do that with some help of an additional medication that tries to stall the cancer. He spent the summer with his family. He rowed his boat, he hiked and he spent time with all his grandchildren. After returning to Colorado, he hiked or went for walks nearly every day until nearly his last day. He was determined to enjoy the outdoors. Scooby passed in late September. I’m thankful for the medications we have available to help our patients get the ability to make more memories, enjoy their life and spend more time doing the things that matter the most to them.
I’m especially happy that Uncle Scooby was able to spend time with our son and watch him grow into a toddler. My son continues to talk about Scooby and his memories that he was able to make with him. Needless to say, my family misses Uncle Scooby greatly and he has made a significant impact on both my husband and I, and our approach to health, life long fitness and the outdoors.
Enjoy the Outdoors and Protect Yourself from Skin Cancer
I love Colorado, spending time outdoors and would never encourage anybody to avoid the outdoors as skin cancer prevention. However, I recommend SPF 30 or higher and I advocate that my patients choose a mineral based sunscreen with zinc oxide and/or titanium dioxide. There is compelling evidence that mineral based sunscreen is better for us, stays on longer without stinging or burning and is better for the environment. Sun protective clothing and hats are essential as well and takes the guess work out of applying sunscreen to every area of skin that we have exposed.
Celebrating Uncle Scooby’s Life and Legacy
I will continue to enjoy the outdoors and continue to take these protective measures. My hope in writing this article is educational as well as sharing a personal story of grief. I’ll be celebrating Scooby’s life by completing a one-hundred-mile mountain bike race in Leadville this summer called the Leadville 100. I’m raising money for an organization called First Descents that helps cancer patients through outdoor adventures as part of my race. I’m honored to be able to share my uncle’s story and his legacy.
Schedule Your Annual Skin Cancer Screening
If you are concerned about a mole or lesion on your skin, nothing compares to a professional skin cancer screening. Our dermatology providers are experts at identifying potentially cancerous spots and they can examine parts of your body that you might not be able to with ease.
At Vanguard Skin Specialists, we recommend an in-office skin exam once a year for patients who don’t have a history of skin cancer. Those who have numerous concerning lesions or a history of skin cancer may need to come more often.
If you have any concerns about new or changing spots, call Vanguard Skin Specialists at (719) 355-1585 or fill out our online appointment request form to schedule your skin cancer screening today.
Emily Reynolds, FNP-BC is a nurse practitioner who practices dermatology at Vanguard Skin Specialist’s Broadmoor and Woodland Park offices. Emily enjoys studying and treating all aspects of medical dermatology, including skin cancer, rashes, and acne.
