Two decades ago, Jim Nace was a national ice cream salesman, on cross-country flights 20 days a month. He was on top of the world.
“I had a great lifestyle, lots of money, vacations; I was very caught up in the world I was in,” he said. “And then I got a sore throat.”
His wife, a dental hygienist, saw something that didn’t look quite right. A visit to the doctor confirmed the worst: It was tonsil cancer. Soon after his diagnosis, his company terminated his job.
More people are surviving cancer each year. But as patients face life after treatment, many find the burden of cancer doesn’t end when remission starts. Cancer can cause depression in patients just as the world expects them to celebrate.
“There I was, happy I was going to live but dejected, because I’m not going to have a job,” he said. “I was making a lot of money; I was worthwhile; I was important. All of a sudden, I was an invalid.”
Nace survived, thanks to radical surgeries that opened up his head and cycles of chemotherapy and radiation.
But it took a toll. For Nace, being a salesman and a breadwinner for his wife and children was a big part of his identity. After his cancer was gone, he took a 60-percent pay cut to work at a new sales job. But there was a new struggle: finding out who he was.
A New Identity
A changing sense of identity is one of the reasons former patients struggle with depression and anxiety. An estimated one in five cancer patients has depression. And studies have found cancer survivors die by suicide at a rate of 24 per 100,000 — nearly 1.5 times the general population.
While he never thought about ending his life, for Nace the struggle was especially hard after the disease came back in 2015. That was the year doctors removed a portion of his jaw. He had to learn how speak and eat again.
“I thought, 'If I’m not able to communicate, and I’m not able to work … I‘m back to not being able to provide,'” he said.
Nace’s new company stood by him through his treatment. He got his voice back and learned to eat by using a feeding tube, a blender and a plunger.
It’s common for cancer to cause physical changes that make people feel disconnected from their bodies: food loses its taste, breasts are reconstructed and weight is lost or gained. The disease can also leave patients with enormous financial burdens and medical debt. Cancer patients are two and a half times more likely to declare bankruptcy than others, according to a 2013 study of Washington patients.
And going back to “normal” life after the support structure of friends and doctors disappears can be lonely and confusing.
'Just Be Where You Are'
“When the casseroles stop and the flowers stop and the Caring Bridge sites close, for a lot of survivors, that’s when the hardest work might begin,” said Rebecca Palpant Shimkets, an Atlanta-based cancer treatment consultant.
Doctors and patients are often so focused on the end game of eliminating cancer, they sometimes ignore what happens to patients after treatment is done, she said. As a thyroid cancer survivor, she knows that struggle firsthand. After treatment, she spiraled into a months-long clinical depression.
“You have society telling you that you were supposed to pop the cork and drink a glass of champagne, and, ‘Congratulations, let’s celebrate!’” she said. “The last thing I felt like doing was celebrating.”
The way cancer survivors are viewed can also be damaging to certain people, she said. Some people might not necessarily want to be inspiring success stories.
“You don’t have to be the person in the brightly colored t-shirt with the balloons,” Palpant Shimkets said. “Just be where you are.”
The National Academies of Science, Engineering, and Medicine want doctors to start paying more attention to patients’ emotional needs post-treatment.
“Health providers, patient advocates and other stakeholders should work to raise awareness of the needs of cancer survivors [and] establish cancer survivorship as a distinct phase of cancer care,” members from the academy’s cancer policy board wrote in a 2006 report.
Doctors should work mental-health screenings and discussions into follow-up appointments, Palpant Shimkets said.
But just talking about post-cancer depression can be helpful in removing stigma and helping patients know what to expect, she said. Patients, their families and friends should know it’s normal to feel sad and lonely after the cancer’s gone and that they might need help from a professional counselor or psychiatrist.
Companionship also can help ease post-treatment depression. A 2018 study from St. Louis University found people with families and spouses are less likely to die by suicide than single patients.
But for people without families, there are still ways to connect.
“So many people come through our door and say, ‘I’m done with treatment, but I was so busy getting through treatment, now that I’m done, I feel really alone,'” said Dannielle Hodges, program director at the Cancer Support Community of Greater St. Louis in west St. Louis County. The center is a hub for current and former cancer patients and their friends and families.
A large percentage of its members are post-treatment patients, Hodges said. They go to exercise classes, support groups and cooking demonstrations together.
Former patients can help each other. Because members are at different stages of their cancer and recovery, they can offer advice and perspective.
“They just understand that general concept of, ‘Cancer isn’t in front of my eyes right now, but it’s hovering in the periphery all of the time,’” Hodges said.
While experts emphasize that everyone has different needs, most say a patient will need to adjust to a new normal after treatment.
“Initially, everybody wants to get back to where they were before, but the reality is, it will be a new you,” Jim Nace said.
That change can bring a renewed sense of purpose. After cancer, Palpant Shimkets now devotes herself to helping former cancer patients with their mental health.
Nace found a new job, too. But his biggest transformation was rediscovering his faith. A chance run in with football player Kurt Warner at a barbershop soon after Nace’s original diagnosis turned into an impromptu prayer circle after the former Rams quarterback espoused the benefits of worship.
Since then, Nace has become a devout Christian who helps other cancer patients through treatment and beyond.
“The new you sometimes may be better,” Nace said.
Follow Sarah on Twitter: @petit_smudge