Cancer Survivorship Is as Unique as the Survivor

When Surviving Cancer Means Living with It

“I saw a doctor after thinking I had some symptoms they mention on TV drug commercials,” said Chuck Rose, a creative director at NCI. “I didn’t expect cancer.”

He was 53 when he got the news: metastatic prostate cancer. What followed were multiple surgeries, monthly treatments, and radiation, which led to other physical issues he had to treat. In addition to emotional and physical effects stemming from their diagnosis and treatment, many survivors experience a new vulnerability as they look ahead. Advances in survivorship science have increased our understanding of and ability to prevent and reduce these effects, but there’s still more to learn and put into practice.

Chuck is one of 16.9 million Americans who are cancer survivors and part of a growing number living with cancer. Someone is considered a survivor from the moment they’re diagnosed, but there are different ways to experience survivorship. If you ask Chuck, he’d say he’s a “survivor in lifelong containment.” Although the cancer is gone, he continues treatment to keep it dormant.

His advice to other survivors? “Keep your sense of humor and be kind,” he said, recalling a memory of a nurse who helped him shower postsurgery. “For 2 weeks, I only had sponge baths, and it was the most gratifying thing, to shower and have someone take extra care,” he said. “I told her, ‘I don’t know how often people take time to appreciate you, but I want you to know you really helped someone today.’ And she cried and I cried.”

As hard as his initial treatment was, Chuck still credits it with saving his life. Today, 7 years later, he spends time with his family, enjoys landscaping, and is “getting better at gardening.” When asked, he says, “I have—not had, have—cancer,” and that means taking daily pills and having periodic treatment. “But that’s not too bad, because I still get to do what I love, and I’m still here.”

What Happens Now? This Doctor Wants to Help Survivors Navigate the Answer

“She rolled up her sleeves and said, ‘I know I gotta do this,’” said Dr. Melissa Hudson, about a mother whose child survived a complicated brain tumor. “She was able to get the care her child needed, but it shouldn’t have been so difficult,” said Dr. Hudson, director of the Cancer Survivorship Division at St. Jude Children’s Research Hospital. “We need to do better at connecting pediatric cancer survivors to care and resources.”

A better understanding of cancer biology and treatment gained over the past 50 years has contributed to an increase in pediatric cancer survivors. Studies looking at whether treatment intensity can be reduced without making it less effective—called de-escalation trials—led to changes like “radiation being reduced or eliminated because we realized we were overtreating,” said Dr. Hudson. Diagnostic and clinical care improvements also emerged, such as using imaging instead of surgery to determine the stage of Hodgkin lymphoma.

However, children who survive cancer still experience significant long-term cognitive, physical, and emotional problems that occur due to treatment (called late effects), such as bone pain, infertility, new cancers, or other effects. St. Jude has counseling, care plan development, and long-term monitoring but “it’s not realistic to think all survivors are going to have access to follow-up programs,” because of distance or cost, said Dr. Hudson. She believes that more comprehensive and widespread support for survivors could help, and her work developing care guidelines and recommendations is a step in making that a reality.

Ultimately, it’s vital to not only reduce the negative impact that cancer treatments can have on a person’s quality of life, but also ensure cancer survivors have access to the care they need, so that they can do more than just survive—they can thrive.

Cancer Sucks. Survivorship Doesn’t Have To.

Matthew Zachary doesn’t do anything halfway. After being told in 1995 at age 21 that he’d “likely be dead in 6 months” from brain cancer, he survived and went on to found Stupid Cancer in 2007, an advocacy organization credited with kickstarting the adolescent and young adult (AYA) cancer movement.

With help from other survivors and advocates, he built a new community of AYA cancer survivors and families, one he wished he had in 1995. To Matt, survivor–advocates are a driving force in all cancer research progress. He described the Cancer Moonshot^SM, the government’s effort to accelerate such progress, as “what advocacy really pushed for. We’re actually using a term Kennedy did, [“moonshot”]. We could’ve never had this conversation 50 years ago because we were dying,” but it’s happening now thanks to advocates’ efforts and advances in prevention, diagnosis, treatment, and survivorship.

Matt asserted though that for AYA cancer survivors in particular, mental health support needs more attention. Although all survivors endure the emotional burden of a diagnosis, it can be particularly hard for the AYA community, who may be facing major life decisions such as college or starting a family. “There’s sheer stress and anxiety in having your life uprooted [by a diagnosis],” said Matt, who at the time was a concert pianist on his way to film school. “I felt like my identity was ripped from me.” More hospitals, including many NCI-Designated Cancer Centers, are now trying to address these needs, but Matt thinks this support should be more widely available and covered by insurance.

In 2019, Matt stepped down as CEO of Stupid Cancer and created OffScrip Media, a podcast network sharing voices and stories of patients and advocates. This year, he’s celebrating his 25th “cancerversary.” “I don’t know how I’m still here,” he said, “But I intend to keep living with punch, meaning, and purpose.”