This year, more than 206,000 Canadians will be diagnosed with cancer, according to the Canadian Cancer Society. Many will deal with the effects of chemo, radiation and surgery. A study just published online in the journal Cancer identifies a new risk that may be just as debilitating. But this problem is psychological.
Post-traumatic stress disorder or PTSD is defined as a mental health condition triggered by experiencing or witnessing a terrifying event. Symptoms include flashbacks, nightmares, severe anxiety, and recurring thoughts about the event. The current study looked at more than 400 adult cancer survivors. Six months following the diagnosis, 21.7 per cent had PTSD. That's nearly triple the 7.8 per cent estimated lifetime prevalence in the general population and double the 10.4 per cent prevalence seen in women.
This is one of the first studies to use gold-standard clinical interviews of cancer patients and to do long-term follow-up.
What triggers of PTSD in cancer patients?
Researchers say the condition can be triggered simply by being diagnosed with cancer — especially when diagnosed with advanced cancer that has spread or metastasized. PTSD can also be triggered by having painful tests such as a mammogram or bone marrow biopsy. Having to remain still for an hour or more in an MRI scanner can act as a trigger. Symptoms of cancer such as pain, nausea and shortness of breath can trigger the condition.
Worry about test results can be a potent catalyst. Earlier this season on White Coat, Black Art, I interviewed Catherine Wreford Ledlow, a professional dancer in Winnipeg who has a form of brain cancer called anaplastic astrocytoma. One of the unfortunate outcomes of this sort of cancer is that it will one day mutate into the one that claimed the life of Gord Downie of the Tragically Hip.
Every two to three months, Catherine has an MRI of her brain to see how the cancer is doing. She has dubbed the week between having the scan and getting the result as 'scanziety.'
How are cancer survivors affected? For some, walking into the hospital or cancer clinic can trigger flashbacks. The smell of chemo or the body odour of patients with advanced cancer can cause flashbacks too. Some patients have an ongoing fear that the cancer will come back and think that every new lump or bump means the cancer has returned. They may also believe that each new symptom such as fatigue, fever, pain or loss of appetite is a harbinger that the cancer has metastasized.
The condition is so debilitating that some of these patients are unable to return to their jobs or resume their parental and other family duties. Some visit the ER frequently, baffling doctors, like me, who don't seem aware that cancer survivors get PTSD. In some cases, cancer patients skip appointments with their oncologist because they want to avoid flashback triggers.
We tend to focus on the patient with cancer, but witnessing the trauma of loved ones can also trigger PTSD in them. Learning that a loved one has cancer, seeing a loved one in pain and experiencing medical emergencies that require hospitalization can also trigger PTSD in caregivers. One study found that nearly 20 per cent of families with teenaged survivors of childhood cancer had at least one parent with PTSD. Research also shows that it is extremely common for parents of children receiving cancer treatment to develop stress-related symptoms.
Depending on the treatment, it can also happen to doctors, nurses and other health care providers who look after cancer patients.
The authors of the current study say that cancer programs need to screen cancer survivors for symptoms of PTSD. To help them, cancer survivorship programs have sprung up across North America. These offer mental health services for PTSD, anxiety and depression. The importance of early recognition and effective treatment is borne out by the long-term risk. In the study published in the journal Cancer, rates of PTSD went down over time. Still, one-third of the cancer survivors with PTSD at the six-month mark still had PTSD four years later. Their symptoms either persisted or got worse making their ongoing survival a lot more challenging and a lot more distressing than it ought to be.
In the past, cancer treatment was all about fighting the cancer. Now, two out of every three people who are diagnosed with cancer are expected to live at least five years following the diagnosis. Canada has close to a million people living with cancer, a number expected to grow dramatically in the years to come. We're going to need a lot more resources devoted to helping cancer survivors deal with the emotional fallout.