Parents are always looking out for their kids. It’s rare when it happens the other way around. But Susan Manber’s 13-year-old daughter saved her life.
It happened one afternoon, not long after Hurricane Sandy had wreaked havoc on the New York City area. “We’d been without power for two weeks and suddenly the lights came on,” recalls the 55-year-old New Yorker. “My daughter, Sarina, and I started celebrating, and then we wound up collapsing on the couch with her head in my lap.” That’s when Sarina said, ‘Hey Mom, what’s that on your nose?'”
Sarina was pointing to a barely perceptible, pimple-like bump. “It was literally underneath my nostril,” says the mother of two, who was single at the time. “You couldn’t see it unless you were looking up from below at that exact angle.” Manber agreed it was an odd place for a pimple and made an appointment with her dermatologist.
Manber’s doctor wasn’t concerned, but removed the lesion and sent it out for testing just to be sure. When he called a week later, his first words were: “You should sit down.” He told Manber that she had a very rare and aggressive form of skin cancer called Merkel cell carcinoma, and needed to see a specialist as soon as possible.
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A Rare Disease, Grim Statistics
Manber was stunned. As the chief strategist at a healthcare communications agency, she was well-versed in cancer topics. Yet she’d never even heard of Merkel cell. She donned her professional cap and got online. The disease, which occurs when cells deep within the top layer of skin (called Merkel cells) start to grow out of control, was rare — affecting about 1,500 people a year.
“What was horrifying was how little information I could find,” she says. “There had only been a few small studies, and there was no treatment protocol.” More horrifying: Because the cancer is usually discovered in later stages, the average prognosis is five months.
A few days later, an oncologist confirmed the diagnosis and, worse, discovered that the cancer had already spread to one of her lymph nodes. “We needed to act quickly,” explains Manber. “But since there was no standard treatment and no clinical trials I could join, we pretty much needed to invent a treatment plan. We decided my best shot would be to carpet bomb it.”
Manber signed on for a series of surgeries — to remove the lesion and surrounding area of her nostril, reconstruct her nose and remove the affected lymph node — followed by six weeks of concurrent radiation and chemotherapy. She would need to take an immediate leave of absence from work. She was also advised to get her affairs in order.
Even as Manber prepared for the worst — setting up trusts, securing a guardian for her kids — she refused to let her mind linger down any dark alleys. “I’m not just a glass full but a glass overflowing person,” she explains. “I cried the day I got diagnosed and that was it. I knew the statistics were dire because this disease is usually caught in later stages. Mine was caught relatively early, so I simply said to myself, I will be here for my children. I will bounce grandchildren on my knees many years from now.”
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Learning to Put Herself First
The next months would test her resolve. During chemo and radiation, she got progressively sicker and weaker. “By the end of treatment, I was bald, couldn’t eat, had no white cells, and had fourth degree burns from the radiation.” she recounts. Once she got home, she was so wiped out, she spent the majority of each day just sleeping.
Even worse was the guilt that constantly weighed on her mind. “I felt like I was letting my kids, my team at work, and everyone around me down,” she says. Then one day her boss at the time gave her a (kind) talking-to. She said, “Your job right now is to get well, and that’s it.”
Manber realized she was right, and decided that, from then on, she would put herself first and simply stop worrying about everyone else. “It was incredibly freeing — and also humbling. I was amazed to see how well people could get along without me,” she says, laughing. “Everyone stepped up. My kids. My team. My community. ‘Me first’ sounds like a selfish choice, but the idea of putting your oxygen mask on before others is actually a caring choice.”
Slowly, Manber did get better. Her strength and appetite gradually returned. Eight months after she was diagnosed, she found herself crying for the second time, when she got her first clean PET scan.
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Embracing Her Own #mefirst Movement
Manber gradually eased back into her old life — but with a difference. Her newfound “me first” attitude was still there. The executive, who used to put in hundred-plus-hour workweeks, found she could be effective at work and also make time for a full and rewarding family and personal life.
After two years of clean PET scans, she even felt ready to date again. “In the past, I thought my job was to find a good father for my kids. This time around I realized what I needed was a good partner for myself,” she explains. Through an online dating site, she met a divorced dad who turned out to be both. Two years later, the couple married and created a home for their now blended family of six.
Paying It Forward
Manber also found time to give back. When she heard that the Skin Cancer Foundation was launching a new public service campaign, she asked the leadership at her company, Digitas Health, if they would be willing to work on the project pro bono. They were immediately on board.
Manber, who knows better than anyone the importance of early detection, helped create The Big See, a national awareness push that drives home the seriousness of cancer (“the Big C”) and the fact that skin cancer is the one you can see. The campaign’s tagline came from the words Serina said all those years ago: “What’s that?”
The catchphrase is meant to urge people to look at their skin, and if they see anything new, unusual or changing, to get it checked. The Big See’s website offers a simple step-by-step for doing a full-body self-check in front of a mirror.
Manber loves that the message is simple, empowering, and inclusive of all skin cancers — melanoma, squamous cell cancer, and basal cell carcinoma, as well as Merkel cell carcinoma. For reasons not fully understood, Merkel cell cancer is on the rise, and is expected to affect 3,250 people per year by 2025. Thanks to advances in the field of immunotherapy, however, survival rates are improving.
“People think skin cancer is the no-big-deal cancer, but I’ve made it my mission to tell people that, no, it actually can kill you if you don’t catch it early. More than two people die an hour from skin cancer,” Manber points out. “We all have the best skin cancer detection tool on the planet — our eyes. If you see something unusual, changing or new, say something.”
You might end up saving your life or — as Sarina did — the life of someone you love.