Cancer Survivors Month: Survivor guilt and getting back to life after cancer

His diagnosis was terminal — four to six months — but that was 15 years ago now and Nathan Calhoun is still healthy and cancer-free.

Calhoun found out at just 28 years old that he had stage 4 melanoma. Without any treatments available and his tumors growing 2 to 4 millimeters a week, there was only one option — a clinical trial. His doctors at MUSC Hollings Cancer Center were able to get him into a tumor-infiltrating lymphocyte (TIL) cell therapy trial at the National Institutes of Health (NIH). It saved his life.

“I know the medical profession is reluctant to use the word ‘cure,'” said Calhoun. “But they did deem that if the cancer were to come back, it would be completely independent of the melanoma that I had."

While part of the trial, Calhoun became close to many of the other patients involved. None of them responded to the trial the way he did.

“Everyone I got close to passed away,” said Calhoun. “And so that was a unique challenge that was unanticipated — the survivor guilt and getting back to normal living.”

 

According to Hollings Cancer Center’s Stacey Maurer, Ph.D., these are common challenges that many cancer survivors deal with as they try to move on with their lives post-cancer. Maurer is a clinical psychologist and associate professor in the Department of Psychiatry and Behavioral Sciences and specializes in working with people who have been diagnosed with cancer.

“What I hear most commonly is that there’s a struggle to integrate back into normal life,” said Maurer. “Sometimes there’s even encouragement from family and friends to be happy that you’re alive and get back to your work, your family and all the things that are important to you. But for most people who have been through cancer, that’s a really challenging thing to do.”

While improvement in the rates of overall cancer survival is very encouraging, survivors may face physical, emotional, social, spiritual and financial challenges because of their diagnosis and treatment. There are often fears that the cancer will come back. Some patients struggle with lingering side effects from their treatment or from the cancer itself and many notice physical changes to their bodies or how they look and feel.

Maurer said there are symptoms that survivors and their families should be aware of post-treatment. Survivors can appear more withdrawn or distracted; they can be hesitant to engage in activities they previously enjoyed, and they may share more worry or may feel and appear more down or sad.

To combat these symptoms Maurer always starts by helping her patients to clarify what’s most important to them.

“I want them to think about what they value most,” she said. “Not what they feel they should value or what they feel they should be doing — but really and truly what is most important to them.”

From there, she recommends taking small steps toward those things. That could be working on having closer family relationships, working on overall health, or doing something they’ve always wanted to do — like going to back to school.

 

A cancer diagnosis affects every aspect of normal life. A healthy transition from focusing on surviving back to living everyday life is critical to long-term health for patients as they head into their post-treatment lives.

“When you’re going through cancer, it’s your singular focus and a lot of day-to-day concerns or worries might even fade into the background temporarily,” said Maurer. “And then it’s like being dropped back into your pre-cancer life while you’re still reeling from this life-changing experience.”

Entering into life after cancer involves giving yourself grace and having patience, she explained. There are also many tools available through the Hollings Survivorship and Cancer Outcomes Research Initiative (SCOR). Survivors can find what works for them from a long list of supportive care services, health and wellness programs, survivorship clinics, support groups and complementary and integrative medicine services like art therapy, spiritual services, pet therapy and yogic breathing.

For Calhoun, he found that sharing his story, not putting too much pressure on himself to set a high standard for what he calls his second shot at life and reaching out to the family members of the other patients he had gotten close to was what helped him through the healing process.

“It's completely counterintuitive and antithetical to what I thought would help at the time,” he said. “I was terrified to speak with the other families, and that’s what ended up helping. You can really overwhelm yourself with the pressure of a new purpose. It's really easy to close off, but healing comes through those connections and reaching out to others.”

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