Editor's note: This is the first of a two-part series on cancer and depression. Part two will focus on a new screening tool to help identify patients at risk.
When Ruth Kaminski learned that the “spot of concern” on her mammogram was breast cancer, first she had a good cry. Then she tried to reassure herself, her stricken husband and her three grown children that the cancer was caught early. Her mantra became, “It’s no big deal.”
In January 2015, she had a lumpectomy. A month later, she started the first of what would be seven weeks of Monday-through-Friday radiation treatments.
On the outside, Kaminski, then 60, was her laughing, clowning self, “always sweet and smiling and up to shenanigans, trying to cheer up my radiation buddies,” she said. As long as she focused on others, she could pretend that everything was OK.
But everything was not OK. She took to crying in the shower.
“Once you hear that word ‘cancer,’ you’re never going to be the same,” she said in a recent interview, a year after her surgery. “You are struggling to be a cancer survivor. It is scary and lonely, since no one can do the treatment for you. It forces you to accept changes you aren’t prepared for and didn’t want. It is painful, emotionally and physically.”
The day after her treatment ended, leaving her with a painful radiation burn, Kaminski stopped pretending. She stayed in bed. She felt herself shutting down. By the time she saw psychiatrist Dr. Jesse R. Fann, she had, she said, “slipped down the rabbit hole.”
“I wasn’t suicidal, but I just didn’t want to be,” Kaminski said. “I didn’t want to be me. I didn’t want any of this.”
Depression and anxiety about having cancer are “common and normal,” said Fann, director of psychiatry and psychology services at Seattle Cancer Care Alliance, the treatment arm of Fred Hutchinson Cancer Research Center. Almost everyone experiences at least a fleeting sense of sadness.
But about 15 to 25 percent of people with cancer—a rate two to three times that of the general population — develop a clinically significant depression that can affect their ability to function on a daily basis, including going through treatment.
And then there’s everyone in between.
“Depression is a spectrum — it’s not an all or none thing,” said Fann, who estimates that as many as half of people with cancer have some degree of depression or anxiety (they often go together) that could benefit from counseling or other therapy. Yet about three-quarters of depressed cancer patients don’t get adequate help, studies show.
To remedy that, the American College of Surgeons Commission on Cancer mandated that, starting last year, cancer centers that want its accreditation must screen patients for emotional distress at some point during their treatment.
Fann, who is also a professor of psychiatry and behavioral sciences at the University of Washington, called the new mandate a good first step, but he pointed out that screening once is not enough because depression can develop at so many different points. He recommends that doctors treating cancer patients be proactive about screening for depression throughout cancer treatment.
“A lot of it is just asking how people are doing emotionally and making it part of routine care,” he said. “There are also very helpful screening questionnaires that can be completed in just a couple of minutes either at home or in the clinic.”
After diagnosis — the first potential trigger — the pain, fatigue and insomnia that can result from the cancer itself or as side effects of treatment can lead to or worsen depression. A number of medications that are used to treat cancer can exacerbate depression, including hormonal therapies such as tamoxifen for breast cancer or steroids used in conjunction with chemotherapy. Interferon, which is used to treat melanoma and some other cancers, is so notorious for inducing depression that anti-depressant medication is often prescribed proactively.
Although it seems counterintuitive, ending treatment — the point at which Kaminski hit bottom — can deepen depression and add to anxiety, Fann said. Happiness that treatment is over is tempered by uncertainty over whether it was successful. Fatigue and problems with memory and concentration often linger. From a social standpoint, people feel pressured to get back to “normal,” ready or not.
The costs for not addressing depression are high. Some research points to it as a risk factor for higher mortality. The mechanism for that is not fully understood, Fann said, but it may be because people who are depressed may be less likely to engage in self-care — to exercise, eat well, adhere to treatment, take medications. Depression may also affect the immune system and the body’s hormonal balance.
“Depression has negative consequences, not just on quality of life but on other symptoms,” Fann said. “People who are depressed experience greater pain, greater fatigue, more sleep problems.”
The good news is that depression is treatable. Antidepressants can help and can be used safely by people with cancer, Fann said. Evidence also supports counseling approaches such as cognitive behavioral therapy, behavioral activation, problem-solving and mindfulness strategies — a wide array of approaches that can be tailored to the specific patient.
But like many others suffering from depression, cancer patients often have to be coaxed to seek that treatment. Despite some gains made over the last few decades to destigmatize depression, many still see it as a sign of personal weakness that can be overcome by sheer will or as a shameful character defect.
“I think there’s a huge stigma,” said Ron Robbecke, who suffered debilitating side effects from his treatment for chronic myeloid leukemia, or CML. “Everybody thinks you’re going nuts. ‘Aren’t you big enough to handle a little depression?’ But I was looking for anything that might help.”
Read more of Ruth Kaminski's story here in her own words.
Robbecke’s first experience with depression began when his wife of 30 years, Arlene, died of colorectal cancer in 1999. Robbecke sold his lumber business to devote himself full time to her care. She had loved her job as an accountant and wanted to continue working; he saw to it that she could. He drove her to her office and home every day, did all the grocery shopping and cooking, took her to her medical appointments, kept track of her medications.
A fighter, she was convinced she would beat her cancer. When the disease moved into her spinal cord and paralyzed her, she said, “I’m done.” A week later, she died.
That was when “the world fell apart,” said Robbecke, now 69. For years afterward, the sadness would come in waves.
In 2005, Robbecke, after two years of puzzling symptoms, received his own diagnosis.
“I thought, leukemia is leukemia — it’s just going to progress, and I’ll be gone,” he said.
That was before he heard about a new type of drug that was changing CML into a chronic, manageable disease. Prescribed imatinib, or Gleevec, he thought, “I might be able to stay alive a couple of years.”
But as grateful as he was for the lifesaving, one-pill-a-day treatment, the side effects knocked him flat.
Every afternoon after taking the drug, Robbecke felt like he was coming down with the flu. Sleep, already troubled since the nights he had spent in his car outside the hospital so he could be close to Arlene, became even more elusive. Severe gastrointestinal side effects kept him largely housebound.
“You wouldn’t want to go out because you didn’t want to be too far away from a bathroom,” he said. “Anything social, you shied away from. You ended up being stuck in your own little shell.”
He busied himself remodeling his house. Watching his grandson after school “kept me going,” he said. But eventually, Robbecke realized that the waves of depression he’d long experienced had become near constant.
“It kind of goes with the territory,” he said. “It comes at you every day that you’ve got [cancer].”
Still, it took a while to seek help. One of the reasons he resisted was that, having seen so many doctors when his wife was ill, he didn’t want to “add to the doctoring process.”
When his SCCA oncologist recommending seeing Fann, Robbecke told himself he’d go “once or twice, and that would be the end of it.”
Fann set about finding ways to alleviate the drug’s worst side effects — and also to help Robbecke sleep.
“He was so calm and collected,” Robbecke said. “He’d listen to what you had to say, then suggest, let’s do this or that. We tried different [medications] until I could sleep better.”
His advice to others: Get help sooner rather than later. And seek a therapist who has experience dealing with cancer patients.
“It’s something you really can’t deal with on your own,” he said. “Most of us men, especially, think we’re tough and can handle all this. But you really can’t. You lay awake at night thinking, ‘I’ve got cancer. I’m going to die.’ It’s hard to deal with without a professional who really understands.”
Kaminski’s version of toughing it out was holding on to her role as family caretaker. She had a hard time acknowledging her own struggle because she was trying to attend to her family’s emotions by masking her own.
She also felt guilty about being depressed because friends and acquaintances kept telling her how lucky she was: Her cancer was diagnosed early, at stage 1, and so many others were worse off than she was.
“People would say, ‘It’s not like you’re dying or anything,’” she said. “And they were right. But they were forgetting I still had to go through the same steps as everybody else. I had to have surgery. I had to have radiation. Being told I have cancer scared me.”
Fann helped her acknowledge that yes, she still had to go through the process. Yes, she has a great prognosis, but she still had to grieve.
“He made it OK to be me, instead of not wanting to be me,” she said. “That was the hardest thing for me: To recognize that my experience is valid, and I have to deal with it and not just push it down.”
Seeing Fann allowed Kaminski to drop her barriers, first to him, then to others.
“After I started seeing Jesse and I truly started listening to what he was saying, I could cry on my husband’s shoulder,” she said.
Her advice to others is similar to Robbecke’s: Get help from a therapist or psychiatrist who has experience with cancer patients.
And, like Robbecke, she counsels: Don’t wait until you crash all the way down.
“My hope in sharing my story is that others won’t wait until they can’t hang on any more,” she said.
Where to go for help:
Many dedicated cancer centers, like SCCA, have in-house psychological and psychiatric services on site. For those not at a center with such services, the American Psychosocial Oncology Society lists community resources and can help connect people with counselors who have experience treating cancer patients.
Support groups can be helpful. The key is to find the right fit. Fann advises patients that they may have to try a few before they find the right fit. Most good support groups have a facilitator.
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Mary Engel is a former staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.