For patients fighting cancer, PTSD is one more battle
New research shows that at least 20 per cent of patients develop PTSD within six months of diagnosis – a rate similar to that of combat veterans
The first time Rabi Qureshi got thyroid cancer, at age 15, doctors took her thyroid gland out. The Toronto teenager fell a year behind in high school and gained 40 pounds in six weeks as her thyroid levels went haywire.
The second time, at age 21, she had to drop out of an art program at Sheridan College. The cancer had spread to her lymph nodes, leading to surgeries that left her with chronic pain. But Ms. Qureshi soldiered on.
Then, at 25, she discovered she had breast cancer. "I really did break down at that point," said Ms. Qureshi, who was diagnosed with post-traumatic stress disorder (PTSD). She had terrifying dreams. "I desperately wanted to sleep," she said, "but I was so afraid of sleeping because I would have the worst nightmares."
Ms. Qureshi, now 30, still struggles with PTSD. Last month, when a friend died of cancer, "this weird guilt and this horrendous weight just landed on me." She cried in her apartment for three days and then had a panic attack in a classroom that left her gasping for breath. But "I just kept apologizing to my professor."
In the so-called war on cancer, PTSD is the collateral damage that blindsides patients and oncologists because of a lack of awareness of the disorder in cancer care. But new research shows that at least 20 per cent of cancer patients develop PTSD within six months of diagnosis – a rate similar to that of combat veterans. The risk increases to more than 30 per cent in patients with cancers such as acute leukemia, said Dr. Gary Rodin, a psychiatrist who heads the department of supportive care at Princess Margaret Cancer Centre in Toronto. PTSD is less common in cancer patients than depression, he added, but "it is a highly neglected problem and a highly disturbing problem."
PTSD affects people who have either witnessed or faced extreme danger, such as a car accident, natural disaster or sexual assault. The disorder puts people on edge, disturbing sleep and flooding the mind with frightening thoughts.
"Patients can feel unreal, preoccupied," said Dr. Rodin. "It's a state of just overwhelming anxiety and distress."
A medical diagnosis is one of the most common threats human beings will face, he pointed out. But unlike soldiers in a war zone, cancer patients cannot escape the immediate threat, because their bodies have become the battleground. "Here we have people who are continually immersed in an ongoing, repetitive trauma."
PTSD tends to fall through the cracks in cancer care, in part because researchers have difficulty recruiting patients with critical illness for psychiatric studies, he said. "Unless you pay attention to these symptoms, they can easily be overlooked."
Dr. Caryn Chan, lead author of the report showing PTSD rates of 20 per cent, said the findings came by chance. In the study, published last month in the journal Cancer, Dr. Chan and colleagues from the University of Malaysia and Harvard Medical School evaluated 469 patients with a range of cancers for anxiety and depression, using gold-standard diagnostic tools. But as they went through the patient interviews, "we realized that they kept bringing up issues about avoiding their treatment because they were fearful, they didn't want to remember," Dr. Chan said. This pattern of avoidance "is a hallmark of PTSD."
She added that the pressure to adopt a "warrior mentality" can make it tough for patients to admit they're having trouble coping, even to themselves.
Ruth Conroy, 73, spent a lifetime seeing herself as the "strong one" who helped out family members and worked as a controller at a manufacturing company. But within two months of her diagnosis of non-Hodgkin lymphoma, in 2016, "I really lost it," she said.
She suffered "horrific" episodes of sobbing that would last for two or three hours. At times, she had fleeting thoughts of suicide, "like I'm just going to take every pill I've got here and swallow them all."
Her inability to control her anxiety and mental distress was tougher to cope with than the radiation or chemotherapy, she recalled. "There was a lot of guilt for me in having those meltdowns, because I wanted to be stronger for my family," said Ms. Conroy.
Her son urged her to see a psychiatrist at BC Cancer, about five months after her diagnosis. Ms. Conroy was too distraught to focus on exercises aimed at changing thoughts and behaviours that trigger anxiety – an approach called cognitive behavioural therapy. "But once they got me on some really good anti-anxiety and depression pills, and a good sleeping pill," said Ms. Conroy, who is now in remission, "things started getting better."
Acute anxiety and stress compound the agony of dealing with cancer – and may also increase the risk of premature death. In a 2012 study of six-million Swedish adults, the risk of suicide in cancer patients increased 12 times during the first week after diagnosis, compared to the rate in Swedes without cancer. Fatal cardiac events were six times as high. The researchers ruled out physical suffering as a cause, Dr. Rodin said: "It's really due to anxiety."
Patients with progressive or recurrent cancers are more vulnerable to PTSD. Previous mental illness also increases the risk. But another predictor of this psychiatric disorder is the kind of care patients receive, he said. "People who are supported through a traumatic experience are much less likely to experience PTSD."
The need for supportive care starts the moment a patient enters a cancer centre. Patients do better when health-care providers have training in how to communicate a diagnosis with empathy, in a way that "responds to the emotional distress of the patient."
Ian Robinson found out he had terminal cancer from Google. After overhearing a clinician dictating the details of his case from across the hall, Mr. Robinson punched the words "stage four metastatic prostate cancer" into his phone as he waited, alone, in a Calgary hospital room.
"I guess he didn't know how well his voice carried," said Mr. Robinson, 60. "It folded me in half."
Mr. Robinson, a former columnist at the Calgary Sun, spent the first months of treatment trying to keep his weight up during chemotherapy and learning to accept that he needed androgen deprivation therapy to stay alive, even if it amounted to "chemical castration."
The nightmares about leaving his family behind didn't come until about a year after his diagnosis in 2016. During the day, he started panicking in elevators and "screaming and melting down" in CT scanners and MRI machines, which he likened to being trapped in a torpedo tube while "a bunch of lunatics are hammering on it with sledgehammers out of rhythm."
Mr. Robinson recognized the signs of PTSD because he had suffered from the disorder earlier in life. Within weeks, he saw a psychiatrist who gave him exercises that led to a "profound change" in how he dealt with the symptoms, he said. His homework: spending time in increasingly tight spaces, starting with a small room, and then writing about how it felt. After about six weeks of these exercises, combined with talk therapy, he went from having panic attacks during MRIs to becoming "someone who falls asleep in diagnostic machinery."
Mr. Robinson doesn't know how long he has to live, but considers himself lucky to be responding well to treatments that may prolong his life. He urges other patients to realize that cancer is not just a physical trauma, but a "psychological disaster, an emotional disaster, a spiritual disaster." Help is out there, he said, "and it'll make you feel better."
The majority of cancer centres in Canada offer psychiatric services or counselling. But patients struggling emotionally often have trouble asking for support because of the combined stigma of cancer and mental illness, said Dr. Alan Bates, provincial practice leader for psychiatry at BC Cancer. Nearly every patient could benefit from some form of supportive care, whether it's an empathic moment with a nurse, a counselling session or psychiatric treatment for suicidal thoughts, he said. But Dr. Bates estimates that roughly a fifth of cancer patients access the care they need. "We should really be seeing a much larger proportion of patients than we see."
Ms. Qureshi tried psychiatric medications prescribed by her family doctor after she was diagnosed with PTSD, but didn't stay on them for long, she said, because they made her feel "a lot worse." She didn't get the emotional support she needed until her third bout with cancer, when a nurse gave her a pamphlet for Wellspring, she said. The Wellspring network of cancer support centres – eight in Ontario, two in Alberta – offer free programs such as nutrition classes, exercise groups and back-to-work sessions aimed at supporting patients and their families during and after cancer treatments.
Ms. Qureshi found comfort in connecting with others who knew what going through cancer was like, she said. She joined an exercise group and worked through her thoughts and feelings about cancer in an art therapy class. "It was one of the most important things in my recovery process." If she'd had this kind of support starting at age 15, she said, "I really don't think I would have had this many mental health issues."
PTSD typically ebbs over time. In the Malaysian study led by Dr. Chan, the rate of cancer-related PTSD dropped to 6 per cent four years after diagnosis. In some of these patients, however, the researchers found a worsening of symptoms at the four-year mark.
When PTSD persists, Dr. Rodin said, "we see abnormalities in the brain." Constant over stimulation of the autonomic nervous system has a "disorganizing" effect on the brain and body, he explained. "We don't have data on how this affects survival," he said, "but it certainly affects well-being."
Ms. Qureshi has trouble shaking off a sense of foreboding, even though things are looking up for her. She's back in college, studying event management, and has landed a paid internship at Wellspring as an event planner and volunteer coordinator. But now that she is able to move on with her life, and enjoy simple pleasures like seafood pasta and superhero movies, "all my anxieties tell me I'm going to be sick again."
She has already made up her mind that if there is a next time, she won't agree to radiation and chemotherapy. "People think I'm suicidal when I say that," she said, but added that few understand how the "violent and aggressive" limbo of cancer treatments "takes away your coping mechanisms."
If cancer strikes again, "I know the toll it's going to take and I'm afraid of that depression," she said. "I'm afraid I won't be able to get through it a fourth time."
A PTSD prevention plan
Researchers in Toronto and Vancouver are testing whether routine emotional support can reduce the risk of cancer-related anxiety and PTSD.
The study, funded by the Canadian Cancer Society, is recruiting several hundred patients with acute leukemia at Vancouver General Hospital and Princess Margaret Cancer Centre in Toronto.
Half will participate in a supportive care program called EASE, short for Emotion and Symptom-focused Engagement. Patients serving as controls will receive standard care.
The EASE group will have individual sessions with a health-care provider trained to offer anxiety management techniques and teach patients – and their families – "how to make sense of their experience," said Dr. Gary Rodin, a psychiatrist who heads the department of supportive care at Princess Margaret Cancer Centre.
After eight weeks, the researchers will compare anxiety levels and physical symptoms between the two patient groups.
In an earlier pilot study involving 42 patients, Dr. Rodin and colleagues showed that EASE reduced both psychological distress and physical suffering.
Offering programs such as EASE as part of routine care is inexpensive, said Dr. Rodin, and can reduce stigma for patients who need psychological help.
"We ought to be supporting them so that they can manage the stressors that we know are going to occur," he said, "rather than waiting until somebody becomes seriously depressed or anxious or suicidal."