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When Katie Coleman was diagnosed at age 29 with a softball-sized tumor on her right kidney and a host of smaller growths in her liver, she was stunned. That astonishment quickly gave way to feelings of hopelessness. “I felt like my entire world was being pulled out from under me,” Coleman, now 32, says. “I went into a very dark spiral.”
Though her surgeon removed all the tumors, it wasn’t clear what her long- or even short- term prognosis was. What she found on the internet just freaked her out more. “One night I spiraled so deep I didn’t know whether life was worth living anymore.”
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Coleman knew she needed help dealing with her depression and anxiety, but she didn’t form a strong connection with any of the therapists she met with. “I never found one who really understood what it was like to be 29 and looking fate in the face,” the software engineer from Austin says.
At her darkest point, Coleman started browsing Instagram posts, “looking for anyone who had what I had,” she remembers. “I needed to see someone else who was still alive.”
She eventually found a match, a man in the U.K. She wrote to him: “I’m sorry to be a random stranger on the internet. I was hoping you would share your story.”
The next morning, she discovered a stream of voice memos from someone with a British accent. “First, you need to get the idea of dying out of your mind,” the voice said.
“He told me how full of a life he felt he was living,” Coleman says. “It was the first time I connected with another patient and the amount of hope it brought me is indescribable.”
Coleman started putting together her own internet-based support group. “Folks pulled me out of some very dark places,” she says. “I always had someone to go to to talk things over.”
The value of short-term goals
The National Cancer Institute estimates that there were nearly 82,000 new kidney cancer diagnoses in 2023. Anywhere from 10% to 50% develop symptoms of anxiety and/or depression after diagnosis, experts say.
Because of that, many cancer centers have added psychiatrists, psychologists, and counselors to their treatment teams. “Anxiety and depression are common complications in oncology,” says Dr. Jon Levenson, an associate professor of psychiatry at the Columbia University Vagelos College of Physicians and Surgeons. “One major stressor is the uncertainty about the course their cancer will take. Patients may have surgery to remove the cancer and be physically asymptomatic for many months, or even longer, but still know there’s a high likelihood of recurrence.”
The stress from all that uncertainty can ramp up to full blown depression and/or anxiety, Levenson says.
For Coleman, the uncertainty was initially paralyzing. “At 29, I was very ambitious,” she says. “I was used to setting long-term goals. Now I didn’t know what next week would look like.”
But Coleman found a way to cope. She started to concentrate on short-term goals—small ones that she could accomplish in the three months between scans. Early on she set a goal of designing a health records app that could help others with cancer keep track of their care. She accomplished that in one of the three-month periods between scans. As time went on and her scans remained clear, Coleman decided to take a chance and started writing a memoir.
Read More: 7 Myths About Kidney Cancer, Debunked
Talking helps—but don’t share everything with everyone
Support groups of any kind can make a person with cancer feel less alone, says Shannon La Cava, director of the Simms-Mann/UCLA Health Center for Integrative Oncology. Sometimes patients say they don’t want to attend a support group, but “I say try two or three sessions,” she adds. “A lot of times after dipping a toe in people say ‘Oh wow, finding people like me gave me a lot of support.’”
That doesn’t mean patients need to share everything with everyone.
Patients often struggle with questions of “who to tell, when to tell, and what to tell,” says Dr. Asher Aladjem, medical director of psychological services at the NYU Langone Perlmutter Cancer Center. “If it makes a patient more anxious to have everybody involved in their experience, I advise them to be very selective about who to tell. I tell patients, ‘Pick a small group of people to tell and choose how much detail you want to give.’”
Aladjem says he tries to help patients draw boundaries and stick with them. In some cases, that may mean telling people you’d rather talk about something enjoyable, like movies.
It’s important, Aladjem says, for patients “to maintain control over what their experience is. There’s already a sense of loss of control with the illness. I think empowerment is very important.”
On the other end of the spectrum, some patients don’t want to talk to anyone.
When Travis Ferguson was diagnosed with kidney cancer at age 40, he kept everything to himself. While he felt empowered enough to leave the medical center in Indiana where he was diagnosed to seek care at a center that specialized in cancer, Fox Chase Cancer Center in Philadelphia, he didn’t know what to do with his fears, anxiety, and depression.
“When I first found out, I went into a real depressive state because I have two grandparents who died from cancer,” he remembers. “It felt like a death sentence. I thought talking about it would make it even more real.”
Although Ferguson had a therapist he’d been seeing to figure out how to deal with some other big life changes, including a recent breakup with his girlfriend, he initially didn’t bring up cancer during their sessions. “I finally brought it up with her because I realized I needed help,” he says. “I had been sliding deeper and deeper into the abyss.”
The therapist increased the dosages of the anxiety and depression medications he was already taking. Then she pushed him to start talking to his family. “They helped tremendously,” says Ferguson, now 41.
Read More: The Latest Breakthroughs That Could Improve Kidney Cancer Treatment
Who am I now?
As Jay Wells knows, the diagnosis can steal a patient’s sense of self. He’d been a park ranger for 30 years and saw himself as a rescuer of others until he was diagnosed with advanced kidney cancer at 68.
“I went from feeling strong and invincible to weak and fragile overnight,” says Wells, now 72. “I had been in a profession that was counted on to go in and rescue people in a bind, after a climbing accident or falling into a river. Now the roles were reversed. Everything was out of my control. It was a hard adjustment.”
Wells started worrying about dying and how his death would impact his wife. “She couldn’t take care of the house and 11 acres alone,” he says. “And who was going to take care of my dog?”
Depression and anxiety set in. At first, Wells resisted going to see a therapist. Then, “I started showing signs of depression,” he remembers. “I’d start thinking about stuff, and sometimes I’d break out crying in front of my wife, and even good friends. They could see I was in emotional pain.”
Eventually, Wells took the advice of those who loved him. He found a therapist who specialized in treating patients with cancer. “She suggested a bunch of things that helped, like meditation and breathing exercises to calm my anxiety. She had me do exercises where I would write about my fears of dying, what I was leaving undone, who I would leave behind, and how I would want to be remembered.”
The writing and conversations with the therapist made a big difference. “It was a way of getting at the anxiety and fears that were lurking just below the surface,” says Wells, who now lives in Ashland, Oregon. “Though it seemed like every time emotions were evoked that choked me up, I felt so much better afterwards.”
A kidney cancer diagnosis often comes as a shock because there haven’t been any obvious symptoms, says Dr. George Schade, a surgeon, associate professor at the University of Washington, and physician with the Fred Hutchinson Cancer Center in Seattle. So it shouldn’t be a surprise that many are shaken by it, he says, adding that some 70% to 80% of patients experience symptoms of anxiety and/or depression.
Those who need help with their emotional distress are generally referred to in-house team members, Schade says. But many patients don’t live close enough for weekly or biweekly appointments. “Patients might be five minutes away or from Alaska or Montana,” Schade says. “So telemedicine has been a huge game changer for us.”
Not every cancer center has mental health professionals on their teams, which means patients need to seek help in their local community, says Dr. Rafael Tamargo, an assistant professor in the department of psychiatry and behavioral sciences at Vanderbilt University Medical Center.
Unfortunately, there is a nationwide shortage of people in these professions now.
While patients look for someone, Tamargo recommends a few self-help methods—such as breathing techniques—to calm anxiety and soothe depression. For example, he suggests an exercise where one breathes slowly through the nose for four seconds, then holds their breath for four, then exhales through the mouth for four, and then waits another four before repeating.
Another way to calm down, he says, is to lie on your back with your eyes closed on a flat surface with your legs and arms extended. Then starting with your toes and working up to your head, focus on relaxing the muscles in each area until they go limp.
Another technique: Imagining a calm scene, such as a babbling brook, and hearing the sound of it and the scent of the surrounding grass, can also bring relaxation.
These kinds of techniques occasionally come in handy for Wells, the senior in Oregon. Even though he’s O.K. much of the time, there’s still some lingering anxiety lurking below the surface. “Before I go to see one of my doctors, or the dentist, or even an eye doctor, I can feel the anxiety building in me,” he says. “Sometimes I use the techniques I learned. I do a breathing exercise and think, ‘Wait a minute, Jay, this is nothing. Just calm down.’”
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Support groups and meeting with a therapist can help.
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Health – TIME
