A Lifelong Journey: What It Means to Survive Melanoma

In 2008, Lori Brossart had a close call.

She saw her dermatologist about a mole on her left cheek and discovered it was an “atypical nevus” — an irregular, non-cancerous mole. That type of mole can look like melanoma, and people who develop one face an increased risk of getting the disease. But Brossart didn’t have cancer. Her dermatologist, Michael Contreras, removed the mole, and she carried on with her life.

Until two years later, when Brossart was 48 and another mole appeared in the same place. This time it was melanoma.

“It was scary,” she recalls. “I was worried about the melanoma itself, and I was worried how much they would need to take off from my face.”

Lifelong Follow-Up and Treatment

It’s been five years since Brossart discovered she had melanoma, and she continues to go for screenings every six months. For Brossart and the more than one million melanoma survivors in the U.S., surviving melanoma is a lifelong journey.Melanoma treatment can often remove the cancer. Caught early, the disease has a nearly 100 percent cure rate. But melanoma can come back. Risk of recurrence depends on thickness of the tumor that was removed; whether the layer of skin over the tumor was broken; whether surrounding lymph nodes are involved; and the speed of cancer cell growth. Melanoma survivors also face an increased risk of developing a second primary melanoma — one that is unrelated to their previous melanoma — which is why they are typically examined by their doctors several times a year.

Depending on a person’s individual risk, doctors may recommend follow-up as often as every three months for the first two years after treatment. Visits may become less frequent after that. Doctors do skin checks at follow-up and might also order blood work, X-rays and scans.

Frequent doctor visits can be a constant and distressful reminder of cancer risk. “We try to get patients to understand that it’s maintenance at this point. We want to make sure your skin looks OK, and if it doesn’t, it’s much better to diagnose something early when it’s small and not deep,” says Joel L. Cohen, a dermatologist who is in practice with Contreras, Brossart’s doctor, at AboutSkin Dermatology in Englewood, Colorado. Cohen is director of the practice, an associate clinical professor in the University of Colorado’s Department of Dermatology, and an assistant clinical professor in the University of California Irvine’s Department of Dermatology.

Melanoma survivors must check their own skin for changes every month. Some people are afraid they’ll miss something, but that’s not very likely, says Barbara Smelko, the registered nurse on call at the AIM at Melanoma Foundation, a nonprofit dedicated to melanoma research, legislative reform, education and patient support.

“People who’ve had melanoma become very astute to their skin. They know every freckle, mole, chickenpox mark and bruise,” Smelko says. “Because of that, if they’re diagnosed with a second melanoma, it’s usually found at an earlier stage than the original melanoma was found.”

For some people, melanoma does not go away after the initial treatment. Some form of treatment that can help keep the cancer at bay may always be a part of life. The uncertainty of living with cancer and the treatment’s impact on a patient’s lifestyle can take an emotional toll.

The Visible Scars of Melanoma

“Unfortunately, people with metastatic disease might be going from treatment to treatment to treatment for years,” says Smelko, “but the melanoma world has recently exploded with a lot of great new treatments and more on the way. People are seeing great results and living for years. It’s very promising.” Those therapies include new biologic treatments that target different pathways of melanoma cell growth for advanced melanomas, as well as several different immune therapies and still-investigational combinations of systemic agents for melanomas that appear to have a worse prognosis, Cohen notes.Surviving melanoma can mean living with visible scars. In Brossart’s case, Cohen and Contreras removed the melanoma, leaving a wound about the size of a silver dollar. Cohen then repaired this surgical defect with a large flap that mobilized skin from her lateral cheek all the way to her temple. The surgery to close the wound left a large triangular scar on her face that went from the outside corner of her left eye to the side of her nose and down to her left jaw.

“It was scary to look in the mirror,” recalls Brossart, who works at an elementary school in Castle Rock, Colorado. “I wondered if I was ever going to be able to walk down the street and not stop traffic.”

Several months after the surgery, Brossart had healed enough to have laser treatments to reduce the redness and thickness of the scar. Last year, Cohen injected Voluma, a filler, into Brossart’s left cheek to make her face more symmetrical. While cosmetic treatments to diminish scars are not covered by health insurance, Brossart was glad she had the option. But she doubted she’d get the results her doctors predicted.

“They did a fabulous job,” she says now. “I do see a scar when I look in the mirror. I think it’ll always be there, but it becomes the new normal. You look in the mirror, it’s there, and you don’t think about it anymore.”

While older scars are much harder to treat, there is a lot of new research on early-intervention scar therapy, Cohen points out. There is not necessarily a way to camouflage all scars, but facial scars that are more recent seem more responsive to treatment.

Some people struggle more with their scars than Brossart did. Glenn Meuche had a lesion removed from his left bicep when doctors diagnosed him with stage 3 melanoma in 1992. Since then he’s had more than a dozen carcinomas removed. “When they cut you, burn you, whatever they have to do, it’s exterior. It shows. You look in the mirror, there it is,” says Meuche, who is a social worker and serves as social work internship program coordinator at CancerCare, a national nonprofit that offers free support services to people dealing with cancer.

Lingering Effects

A melanoma survivor for more than 20 years, Meuche still has moments of insecurity about his scars. “A lot of them are around my torso. Sometimes it’s difficult for me to go on the beach. And it can make sexual intimacy challenging, especially in a culture that values youthful, healthy skin.”Scars are not the only lingering effects of melanoma. If there is a chance the melanoma has spread, doctors might recommend removal of some lymph nodes. The lymph nodes drain fluids from the body, and when they are removed, fluids can collect in the area that the nodes once drained, such as the arm. This is called lymphedema, and it can cause severe swelling, restricted movement and a heavy feeling. Loss of lymph nodes can also make a person more susceptible to infections, such as cellulitis.

Physical therapy and compression garments can often control lymphedema, but its appearance can still be hard to cope with. “It can be a major challenge to body image and self-esteem,” says Meuche.

Whether patients are dealing with scars, lymphedema or other disfiguring effects of melanoma, Meuche encourages them to differentiate between the way they see themselves and the way that others see them.

“I validate their feelings about the way they look, and then I ask them to step outside of themselves and think about the people in their lives that love them,” Meuche says. “When we’re not feeling good about how we look, we tend to project that onto other people, thinking that they’re feeling the same way about how we look.”

Coping

Brossart had to learn not to assume her husband felt the same way that she did about her scar. “I was worried about it. I said, ‘You’re the one that’s going to have to look at me,’ and he said, ‘No, I get to look at you.’”Whether the problem is visible scars, lymphedema or invisible fear and uncertainty, the lifelong effects of melanoma can cause stress, anxiety and possibly depression. People may also feel guilt or shame for worrying about a scar when they think they should just be happy to be alive.

“Survivorship isn’t simply about living longer. It’s about your quality of life,” Meuche says, “which unfortunately is sometimes overlooked.”

Talking about your struggles can help. But friends and family may not respond the way you need them to.

“They say, ‘Don’t worry. You look great,’ or ‘You licked this already. You won’t get it again.’ But those are just trite platitudes and the last thing that people want to hear,” says Meuche. He adds that loved ones might not realize that you continue to struggle with the aftermath of melanoma long after the five-year survival mark.

“It’s been over 20 years, and there are times when I can look at my cancer and see how it’s helped me grow. And there are times when I still really struggle with it,” Meuche says. Meuche often refers to this experience as the “shadow side of cancer survivorship,” saying that “there are some aspects of the cancer experience that one can readily reconcile himself or herself to, and then there will be those parts that will be more difficult to come to terms with.”

Grieving the loss of the life you imagined for yourself or the body you once had is a valid emotion. Counselors, support groups or fellow survivors may provide the understanding that melanoma survivors seek. Some find this support through social media or through organizations such as AIM at Melanoma, CancerCare and the National Lymphedema Network. If melanoma survivors believe they are depressed, experts encourage them to seek help.

“People want to be heard,” Meuche says. “You have to give them a voice and validate their feelings: ‘Yeah, I get it. Of course you fear recurrence.’”

After Meuche shows his patients that their concerns are legitimate, he offers practical advice, whether it’s how to find a lymphedema specialist or how to communicate more clearly with doctors. “I encourage them to be their own advocates,” he says. If health care providers dismiss your concerns, he adds, keep pushing or find a provider who isn’t dismissive.

While melanoma might be a permanent part of life, it doesn’t have to take over. “Find the things that bring you joy, whatever it is that might bring some joy and mental relief,” Smelko says, “and do that.”

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Meuche finds more mental relief with each passing year. “The longer you survive, it really does increase your hope. I no longer worry that I’m not going to live. I worry about other things, like keeping as healthy as I can. Everything changes. You evolve.”