Post-Traumatic Stress Disorder among cancer patients can affect treatment outcome.
WE often hear about cancer patients who refuse treatment. Some even stop treatment after a few sessions.
We also read about those who believe in alternative treatments rather than conventional ones. The reason given is that they hate the pain or severe side effects of their treatment. They say alternative treatments are better because chemotherapy also kills healthy cells.
As many of us don’t have any idea what it’s like to face cancer, we are quick to think that these patients are making excuses because they are in denial about their disease.
But what we are unaware of is that cancer patients suffer from Post-Traumatic Stress Disorder (PTSD). They have intrusive thoughts related to flashbacks of their diagnosis and treatment and fear of disease recurrence, which lead them to decline or default on their treatment.
PTSD is often associated with people who have experienced or witnessed a life-threatening event such as war, a natural disaster, an accident or sexual assault.
But cancer can be equally traumatic for some patients, because it brings fear — fear of pain and dying. When they are in constant fear, their thoughts and feelings are affected.
PTSD is a psychological distress for cancer patients when they are dealing with a traumatic illness.
The link between PTSD and cancer was recently revealed in a study by researchers from Universiti Kebangsaan Malaysia (UKM) led by Caryn Chan Mei Hsien.
In the four-year study, it was found that one in five cancer patients developed PTSD within six months of their diagnosis. Four years later, one in three developed chronic PTSD.
The study, which began in 2011, followed 469 patients at Universiti Malaya Medical Centre (UMMC) with various cancers at various stages.
More than 100 patients had breast cancer while the remaining suffered from lung, gastrointestinal and gynaecological cancers.
Chan, who is UKM’s senior lecturer in psychological medicine, says the study initially looked at the impact of anxiety and depression among cancer patients.
However, a month into the study, researchers found that patients were showing symptoms of PTSD, not just general anxiety and depression.
Chan says it is important to highlight the link between cancer and PTSD because in many cases, it leads to default in treatments. In Malaysia, 30 per cent of patients don’t follow up on their treatments.
“Why the high rate of default in treatment? Why do they refuse treatment and why the need to seek alternative treatments? We found that this is because they suffer from PTSD.
“Cancer patients are thrown into a traumatic situation when they are diagnosed and have to start treatment immediately. There is little time for adjustment and to be prepared. They have to deal with fear — of treatment, dying, pain, loss of dignity and the impact on their finances and family.”
She says unfortunately, there is a lot of stigma attached to mental health in the country. Patients, especially males, feel that seeking help for mental issues is a sign of weakness. It makes them feel vulnerable, like they can’t deal well with their illness.
As they don’t want to talk about their fear, some cancer patients put up a front of being positive all the time even when their disease is at an advanced stage. However this positive attitude may not always translate into them seeking treatment.
Cancer patients must be allowed to say they are worried, scared or that they are not dealing with the illness as well as what people think, says Chan, who is a doctorate holder in psychological medicine.
“If we offer them options, management and treatment for these emotional issues, then they will realise that it is something that can be taken care of.”
Secondary findings of the research revealed that cancer patients also suffer from two symptoms of cognitive impairment related to PTSD. It was found that 77.3 per cent have trouble remembering and 68.2 per cent have difficulty concentrating.
“These symptoms are often referred to by oncologists as chemo brain because they think they are the side effects of chemotherapy.
“However, these symptoms are also prevalent in patients who did not undergo chemotherapy. This means they may not be due to the side effects of chemotherapy. But we need more studies to confirm this. Cognitive impairment in cancer patients is a new area so it is something that we need to look at more closely.”
The research on PTSD and cancer, said to be one of the largest in the world, has received worldwide attention. The findings were published in CANCER, a peer-reviewed journal of the American Cancer Society, and have been mentioned in international media publications.
Chan, who had to partially fund the research personally, says she is happy that people are paying attention because it means that cancer patients with PTSD are finally getting attention.
“There has been little attention on this area as revealed by the study. I am happy to raise awareness on this issue especially if it helps patients. Hopefully it will help reduce the stigma attached to mental disorders among cancer patients,” says Chan.
Based on the findings, psychological care as part of cancer treatment must be implemented. There are various way to help those with PTSD including peer support and psychotherapy.
The psychological impact of cancer is important because it is difficult to separate the mind and body.
“If we can help with the psychological aspect, we are also helping with cancer treatment. PTSD can be managed a lot easier than cancer.
“If we can invest lots of money to come up with latest treatments for cancer, why not also invest in treating PTSD that comes with the disease. As a result, patients can cope and manage the disease better.”
The study also found that patients with breast cancer were 3.7 times less likely to develop PTSD after four years. This is due to the support at UMMC which focuses on counselling for breast cancer patients within the first year of diagnosis.
Chan says as such, there is a need for a similar risk targeted strategy for patients with other types of cancer, especially in government hospitals.
“One of the reasons I moved to UKM from UM was to set up a psycho-educational resource centre. We are in the process of designing a programme for patients with the Radiotherapy and Oncology Department of Hospital Kuala Lumpur.
“Cancer patients at government hospitals do not always have access to psychiatrists which makes it even harder for them to talk about psychological issues.”
At the centre, there will be early screening of patients for PTSD, anxiety and depression or other symptoms of psychological distress. The plan is to implement a long-term programme to help patients with different tumour types and at different stages of their disease.
In the near future, Chan hopes to start a study that will look at more patients and at more cancer centres.
“I have secured a small fund andhope to apply for further funding. We are looking at starting another study that will be representative of a wider population.”