In October 2001, David Fuehrer was the strongest man in New York. Or at least he was the holder of a statewide “Natural Bodybuilding” title.
Just four months later, Fuehrer was diagnosed with testicular cancer. He was 25 years old.
“I went from being a competitive athlete and just starting my master’s to ‘cancer patient,'” says Fuehrer, now 38. He underwent surgery, finished his degree and moved on with his life.
At age 30, it happened again: Fuehrer was diagnosed with another type of testicular cancer. This time, the disease was more severe. He underwent surgery, one month of radiation and nine months of hormone therapy.
But ironically enough, one the worst parts of it all was after doctors declared Fuehrer cancer-free.
“Just after treatment was harder for me than treatment because when you’re in treatment, you’re given the protocol, you’re told what time to show up and what they’re going to do to you … it’s very structured,” says Fuehrer, president of Emerging Space in Rochester, New York, which helps entrepreneurs and organizations launch new products. “When you finish treatment, all of a sudden, you just turn loose.”
Fuehrer’s experience is common and can be daunting, experts and survivors of life-threatening illnesses like cancer say. Not only does the daily pattern of life change dramatically when someone is discharged from a long hospital stay, but “it’s extremely difficult to simulate that amount of attention and care you get in a hospital setting, where people are dedicated and focused on you,” says Lorenzo Norris, an assistant professor of psychiatry and behavioral sciences at The George Washington University.
And while family, friends and colleagues want to celebrate a former patient being “back to normal,” the truth is, he or she may always have to deal with the lingering physical and cognitive effects of treatment and the fear of relapse — without the comfort of treatments that can at least make patients feel like they’re doing something about it.
“There’s an unexpected transition that occurs for many patients at the end of treatment for serious illnesses like cancer,” says Daniel Shapiro, a cancer survivor and chair of the department of humanities at Penn State College of Medicine who studies medical crises and physician-patient-physician communication. “While chemotherapy and radiation, for example, are at best a nuisance and at worse a misery, we are often surprised by the bewildering feeling of having to transition back to some semblance of normalcy with no guarantee of disease-free living.”
A ‘Vicious Cycle’
Research suggests that between 25 and 40 percent of people may go through some depression after cancer, according to the 2013 book “The Cancer Survivor’s Companion: Practical Ways to Cope With Your Feelings After Cancer.” Other research finds that more than one-third of American cancer survivors have physical or mental problems that threaten their overall health.
Similar rates might apply to survivors of other life-threatening diseases that require long hospital stays, although the topic is most studied in cancer care, says Dimitry Davydow, associate professor of psychiatry and behavioral sciences at the University of Washington School of Medicine. His work has found that about one-third of survivors of critical illnesses have clinically significant depression, and a quarter have post-traumatic stress disorder.
“Being really sick to the point where you’re in the hospital for a long period of time or certainly the ICU, that is an incredible stressor from a psychological standpoint, from a physiological standpoint,” he says. That can cue a “vicious cycle” for the body, mind — and health care system, since people who are depressed after a hospitalization are more likely to have physical problems and vice versa, Davydow says.
Long-Term Recovery
When Jessica Sultaire heard that her CT scan showed no evidence of cancer, she was “over the moon.” But that doesn’t exactly mean the 27-year-old academic adviser in Providence, Rhode Island, who had undergone about five months of chemotherapy for stage 3 ovarian epithelial cancer, felt good.
“People say, ‘OK, you’re better now’ and they often don’t realize that … it takes a few months to get the poison out,” she says. “Even though you’re better on paper, you may not feel exactly like yourself.”
Even long after treatment has ended, its consequences can persist. According to the American Cancer Institute, many cancer survivors report fatigue, pain and appetite changes. Cognitive challenges are common, too. A 2011 study in the journal Cancer, for instance, found that breast cancer survivors struggled with memory and concentration three years after treatment, whether they had chemotherapy and radiation or just radiation.
“That’s what other people don’t get: The initial treatment is done, but there is still so much psychological recovery,” says Norris, who directs George Washington University’s Cancer Survivorship Center. “There’s still so much more work that needs to be done — you still have to deal with tests, you have to deal with insurance, you have to deal with a lot of things.”
Fuehrer, for one, has to deal with taking hormone shots every two weeks for the rest of his life. He also had to come to grips with his own infertility — something he wishes he had been prepared to think about during treatment.
“Nobody ever told me that I was going to go from a 30-year-old’s hormone level to an 80-year-old’s hormone level, and [that] I was going to feel depressed and I was not going to have my confidence when I was supposed to be in the prime of my business life,” he says. “All those things just aren’t dealt with, so when your treatment ends, you’re sort of left alone, saying, ‘How do I deal with all these issues?’ Because I didn’t even know I was going to face them.”
Survivorship
The good part of all this is people are surviving cancer and other illnesses much more frequently than in years past. According to a 2014 report out of the American Cancer Society, the number of cancer survivors in the United States is expected to grow to almost 19 million by 2024. A similar shift is happening among the critical care patients in Davydow’s studies. Among sepsis patients, for example, about 70 percent used to die — now about 70 percent live, he says.
That means the concept of “survivorship” is gaining awareness and helping people like Fuehrer and Sultaire find resources — and each other — to cope with life after cancer. The National Cancer Institute formed the Office of Cancer Survivorship in 1996, for example, and programs like George Washington Cancer Institute’s “Thriving After Cancer” program help survivors plot out their post-cancer care plans, connect with physical and mental health care providers, and handle logistical issues like weeding through insurance bills.
Family and friends can help ease survivors’ transitions too, by being present — but not overbearing — and not expecting the survivor to bounce back to his or her old self immediately. “You don’t really require any big grand gestures — it was just nice that people were still thinking about it because I was always thinking about it,” says Sultaire, who’s now involved in a clinical trial to treat her cancer, which recurred last December.
For survivors themselves, speaking up about what you need — be it a gallon of milk or just some alone time — can make life after cancer easier. Connecting with other survivors can also make a big difference, says Fuehrer, who now serves on the board of Stupid Cancer, a nonprofit supporting young adult cancer patients and survivors. Meeting the organization’s founder, he says, “gave me not only the ability, but the courage to say, ‘I’m a cancer survivor, and that doesn’t make me wrong,'” Fuehrer says. “That changed my life — to not have to hide it anymore.”
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How to Cope With Depression After Hospital Discharge originally appeared on usnews.com
