Living With Cancer: Life After a Stage 4 Melanoma Diagnosis
Key takeaways:
When Lisa Russell found a bump on her scalp, she thought it was a harmless cyst.
It turned out to be stage 4 melanoma, a life-threatening skin cancer.
Lisa did her research and worked her way through treatment and recovery. Now, she helps support others going through the same thing.
If you met Lisa Russell today, a 67-year-old enjoying retirement and daily walks, Sunday family dinners, Wordle, and jigsaw puzzles, you might first imagine a lifetime of serenity and smooth sailing.
But there were the risk-taking and adventurous early married years, when she and her musician husband crisscrossed the country in pursuit of his dream. While living in Los Angeles, she went to grad school, had her first child, and began an accomplished career as a corporate research librarian at Hughes Aircraft Co. and later at Procter & Gamble, Ethicon, and Wright Brothers Institute.
And then there is a long chapter in the middle that begins with a tiny, colorless bump Lisa detected on her scalp with her fingertips. By then, she was in Cincinnati, 50 years old, busy with her family of four and a dream job at P&G. Six months after showing the spot to her doctor during a routine examination, it was no longer tiny. She agreed to outpatient surgery to remove it but delayed the procedure until after a family beach vacation. Both Lisa, who’d done independent research, and her doctor believed it to be a harmless cyst.
Except that it wasn’t. Tests of the tissue after removal proved that it was melanoma, the deadliest form of skin cancer there is. And it had metastasized, already spread to other places in her body.
Preparation, problem-solving, and faith
One of her early thoughts after receiving the news was, “I might not live, but I’ll be OK,” she says. “I’d already achieved more than I ever expected to professionally. My children were already well on their way to becoming good adults, good people.
“I suddenly realized that everything in my life up to that point had prepared me for this. The years I spent as a unit clerk working in hospitals [before grad school] had given me a medical vocabulary and respect for doctors and nurses. I wasn’t afraid of that world.”
Lisa had always had a heads-down, problem-solving approach to challenges, shaped by life experiences like the time her entire family was struck by a car while walking in L.A. (All fully recovered.) She applied that approach now.
“I focused on what needed to be done now, to get tests done,” for example. “Once I figure out what I need to do, I make a conscious decision to accomplish that each day,” she says. “An NIH (National Institutes of Health) nurse I keep in touch with recently told me I was the most willful patient she’d ever met.”
Lisa also points out, simply, that she “was very fortunate.” She had experienced doctors she trusted and who she believes advised her well, looking back and noting that doctors are humans who can’t control everything or accurately predict every future. She also had support from work and family.
“I was lucky to be working for a large employer,” she says, “They paid my full salary for the first year of disability and half of it the second.”
Her husband respected her independent decisions and was at her side as much as possible. They stayed with her sister when they later visited the NIH. Her asthmatic son showed her how to use the pentamidine inhaler she brought home — sans instructions for use — during a 2 a.m. emergency.
She had faith in science and medicine, and she also had religious faith. “Faith was — is — at the base,” she says. “I trust in my God that I’ll be able to face whatever I have to face. I know that a day will come when I die, but we don't know when that is. I just need to focus on the goal and just keep plugging along.”
From treatment failure to cure
Lisa was diagnosed in late summer 2005, and her treatments began that November.
She received four cycles of three different chemotherapies daily and interferon injections. Continuous IV infusions for days at a time as an in-hospital treatment made her “really, really sick,” but finally doctors did scans to evaluate how well it worked.
All of the tumors had grown, and she had a new tumor on her left adrenal gland.
“This was very, very hard,” she says quietly. “I felt really sick all the time. I stared at the TV a lot. I read thrillers because I could get lost inside the story.”
Lisa was familiar with clinical research from her work in a P&G pharmaceutical division. When the idea of a clinical trial as a treatment option arose, she was willing. In February 2006, she started taking an experimental treatment. The pharmacist on site would prepare a mixture, which was then immediately injected into her thigh and arm, just under the skin.
“It was really thick, and it hurt like hell,” she says, but she continued until “my skin wouldn’t hold it anymore, and this stuff would drip down my arm.”
The doctors stopped the treatment. When they did the scans again, they learned that “it was not doing anything. Everything was growing. What a blow.”
Doctors reviewed six new chemotherapy options with her, none of which promised a very good response. One of her doctors said, “‘And then there's this thing from outer space,’” referring to the experimental nature of it, Lisa says. “I said, ‘Well, tell me about that.’ And he described it. I knew it would be hard for a body to bear. And I looked at him, and I said, ‘That's the one I want, because I may never be this healthy again.’”
Lisa’s husband supported her choice again that day, and after interviewing and qualifying for the NIH clinical trial, Lisa traveled there to receive a highly experimental treatment protocol for people with metastatic melanoma (chemotherapy, radiation, infusions of cells derived from her own tissue, and interleukin-2). After the October 2006 treatment, she had several subsequent health emergencies and hospitalizations to treat side effects including kidney problems and congestive heart disease.
But the treatment that made her sicker than she’d ever been also led to improvement as measured by quarterly, then biannual, follow-up scans.
Over the first year, all the lung tumors disappeared. The following year, the adrenal gland tumor shrank.
“And then, by December of 2010, [the last tumor] was gone.”
Lisa says her status went from “partial” to “complete responder.” Finally, in 2020, the doctors called her treatment at NIH a “cure” for her.
No more dresses: long-term impacts and advocacy
Today, Lisa only takes daily blood pressure and cholesterol medication. There’s a family history of high cholesterol.
In addition to walking for aerobic exercise, she lifts weights to preserve joint health — an age-, not melanoma-related, concern. An early surgical treatment damaged nerves in her neck, which affected her golf swing, but she continued socializing with her golf friends.
She wears sunglasses, sunscreen, and long-sleeved shirts and pants — never dresses — to cover and protect her skin throughout the year, including during the hot, humid summers of Cincinnati.
“I won’t have melanoma again, unless it's a completely new melanoma,” she says, adding with a laugh, “I don’t think any doctor would tell me to do this,” meaning that her precautions might be going above and beyond. “Let’s say it’s my idiosyncrasy, and I’ve earned the right to it.”
For 10 years, she served on the board of Melanoma Know More, where she proudly points to a recent emphasis on outreach to newly diagnosed people. Although she’s no longer on the board, she continues to work the booth at health fairs at hospitals and universities, talking to people and giving them information on melanoma risks and disease.
She’s also a mentor “angel” for Imerman Angels, a Chicago-based organization that pairs cancer survivors with people with new diagnoses around the country. “Mostly I listen to their story, then see if I can share anything that can help them.”
One of the most lasting impacts may be seen in her general outlook or mindset. “I don’t think too much about yesterday or tomorrow,” she says. “I really am grateful for each day.”
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