More and more patients are surviving colorectal cancer long term, thanks to advances in treatment. A new study addresses a little-understood aspect of these survivors’ experience: the emotional aftermath.
The study found that, even many years after their diagnosis, colorectal cancer survivors most often cited “psychological distress” as the worst experience of their illness.
“Even after many years, colorectal cancer survivors clearly remember experiences from the time of their illness,” said the study authors, led by Vinzenz Völkel, MD, of the University of Regensburg/University Hospital Regensburg in Germany. The study was published online February 13 in BMC Cancer.
Several studies have shown that cancer survivors may suffer from long-lasting impairments on their quality of life — some considering the cancer experience a profound or traumatic event and some continuing to suffer from long-term symptoms, such as bowel problems.
Volkel and colleagues wanted to better understand survivors’ subjective attitudes and recollections of their illness and treatment over the long term.
The team asked 220 patients with colorectal cancer who had participated in a previous randomized controlled trial to complete a questionnaire that asked them to describe the worst event that happened during their cancer bout, then to discuss positive elements of their experience, and offer advice to other patients facing the same diagnosis. Patients had initially received surgical treatment between January 2014 and October 2015 and received the questionnaire 5-7 years after their colorectal cancer diagnosis, between April and August 2021. Of 146 available survivors, 96 (66%) responded to the survey.
The result showed that survivors still vividly remembered the details of what they had gone through. One third (33%) of the respondents characterized their worst experience during their illness as “psychological distress,” referring primarily to anxiety regarding the uncertainty of their prognosis. One statement from a survivor, which the authors translated into English, described a “[f]ear that the tumour could already have spread, which was not the case though.”
About 17% cited “indigestion and discomfort during defecation,” and 16% cited receiving the cancer diagnosis itself as their worst experiences. In addition, among patients with a history of stoma, 36% said that the stoma was the worst part.
On the other hand, 45% of patients reported that a “change in life priorities” was the most positive aspect of surviving colorectal cancer. One in four survivors said they were grateful for the support they received from their medical team.
As for words of wisdom for newly diagnosed patients, 43% of respondents said having a “fighting spirit” was the most advice. In addition, 21% of respondents said “cancer screening” was important advice for future patients.
The researchers behind the study noted that they hope their work will help cancer programs improve both patient care and aftercare. Clinicians can use these findings to identify more specific patient needs. “Understanding long-term recollections of cancer survivors is very important to minimize the negative impact of a tumor disease on a patient,” the authors write.
Mark A. Lewis, MD, director of gastrointestinal oncology at Intermountain Healthcare in Murray, Utah, agreed with the findings.
“I often wonder if the fear of recurrence, in particular, is a near-immeasurable burden psychologically on any patient who achieves remission,” said Lewis, who was not involved in the research. “We are often very careful not to use the word ‘cure,’ as we cannot see the future.”
Curtiland Deville Jr, MD, weighed in on his experiences with what patients are most concerned about at the completion of treatment, which largely align with those highlighted in the study: fear of recurrence and side effects of treatment.
These issues can inform aftercare in three key ways: “the surveillance plan for their cancer — meaning frequency of their bloodwork, imaging, and follow up visits; diet, wellness, and lifestyle changes that can reduce their risk for cancer recurrence, which are often underdiscussed; and mitigating the short- and long-term side effects, and residual effects, of the treatments that they received,” said Deville, associate professor of radiation oncology and molecular radiation sciences at Johns Hopkins Medicine in Baltimore, who was not involved in the research.
Plus, Deville added: “Coping strategies, patient advocacy, and support groups can be good resources to supplement these issues and concerns.”
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