Cancer patients and caregivers concerned about postponed and cancelled screenings during the pandemic

The cancellation and postponement of cancer screenings because of the COVID-19 pandemic has caused anxiety and distress for a significant number of cancer patients, pre-diagnosis patients, and caregivers across Canada, according to a survey recently conducted for the Canadian Cancer Survivors Network.

With screenings and tests delayed, cancer patients have been left in the dark about the state of their disease. Sasha, an Alberta lymphoma patient whose cancer is in remission, suspects that her cancer has recurred, but doesn’t know for sure because her CAT scan was postponed. Her greatest concern, she wrote, is “that they will not be able to detect re-occurrence fast enough and it will have spread before I get to treatment.” For her and others in the same position, regular testing is the only way they know if they are still cancer-free.

Among those surveyed, 23 percent of cancer patients, 33 percent of caregivers, and 34 percent of pre-diagnosis patients had a routine cancer screening cancelled or rescheduled because of COVID-19.

Even as provincial health authorities begin resuming cancer screening programs, the backlog of tests means that the delays are not over. Some patients fear that if they develop new symptoms or problems, their concerns might get lost between COVID-19 chaos and the backlog of appointments.

“My fear is that I’d get a relapse and it wouldn’t be a priority for doctors,” wrote an Ontario stage 3 carcinoma patient. “Living with cancer, even being in remission is a constant stress.”

Almost half of patients surveyed (49%) were concerned about being able to get cancer-related testing during the pandemic. 36 percent were worried about their cancer progressing further during COVID-19. This concern was most prevalent among stage 4 patients and recently diagnosed patients (i.e. less than two years ago).

It’s not only current cancer patients who are worried – patients awaiting a potential cancer diagnosis have to wait even longer to find out if they have cancer or not. Many of them worry that if they turn out to have cancer, it won’t be caught in time to respond optimally.

“Having the doctors postpone and cancel my appointments and treatments makes me a bit worried,” said an Ontario pre-diagnosis patient, “because I’m scared it might spread during the time being without my noticing.”

59 percent of pre-diagnosis patients surveyed were anxious about getting tests to confirm their diagnosis in a timely fashion, and the same number were worried about receiving cancer treatment in good time if they find out they need it.

An Ontario breast cancer survivor shares this concern, empathizing with pre-diagnosis patients. “When I was first diagnosed (non pandemic),” she wrote, “I had surgery within one week, dense dose chemotherapy, and extensive radiation. I appreciate how very fortunate I was, and if my treatment plan had been delayed I suspect my survival would not have been assured, so I am very concerned about any new patient who may be in a similar situation at this current time.”

Caregivers of cancer patients have also been distressed by the cancelled and postponed screenings – among those surveyed, even more so than patients.

One respondent who cares for a stage 3 colorectal cancer patient was very concerned about the rescheduled tests because, as she wrote, “when you are dealing with cancer, the sooner a problem is detected and can be acted upon, the chance for a positive/successful outcome is increased. Being successful with cancer depends upon timely action.”

Another source of anxiety for caregivers has been the uncertainty about when the person they care for will get tested again. “It is frustrating to have scheduled appointments cancelled without knowing when the rescheduled appointment will be made in the future,” said a caregiver for an Ontario stage 3 liver cancer patient. “As the state of emergency remains in effect, it is anybody’s guess as to when in-person medical appointments may resume.”

Most caregivers surveyed are highly engaged with the cancer care of the person they care for. Many say they assist them in ways such as attending their appointments (62% of caregivers surveyed), driving them to appointments (85%), and participating in medical treatment decisions or discussions (66%). About six in ten caregivers have interacted with specialists or GPs during the COVID-19 pandemic.

For these reasons, sudden reschedulings and heightened uncertainty are matters of practical responsibility as well as emotional support for caregivers. This may be part of why more caregivers than patients said that they were significantly more anxious about their cancer care because of COVID-19.

The survey was conducted by Leger on behalf of the CCSN between May 22 and June 10. There were 1243 participants – most from Leger’s LEO panel, and some from the broader cancer community. They were asked about how the disruption of cancer care due to COVID-19 has affected them, and about their fears and concerns related to their cancer care during the pandemic.

Survey responses quoted in this article have been lightly edited for grammar.