Lung cancer patients and caregivers anxious about their vulnerability to COVID-19

It’s hard to think of a worse time to be a lung cancer patient than during a global pandemic. This situation provides many sources of anxiety: lung cancer patients are worried about being vulnerable to infection, about getting severely ill if they do get COVID-19, and about the potential for infection in places like hospitals. The Canadian Cancer Survivor Network’s recent survey provides a window into this situation from the perspective of cancer patients and caregivers, showing the psychological toll that it has taken on lung cancer patients and their caregivers across Canada.

A respondent with stage 4 lung cancer wrote that his greatest fear was “picking up the bug. It would be the end of me. I am not worth treating as cancer will take me in the end anyway. I’m on borrowed time now!”

The survey of 1,243 cancer patients, caregivers, and pre-diagnosis patients was conducted by Leger for the Canadian Cancer Survivor Network in late May and early June. Respondents were asked about how the COVID-19 pandemic had affected their cancer care (or that of the person they care for) and about fears and concerns related to their cancer care that the pandemic had caused.

Among those surveyed, eight percent of patients surveyed have lung cancer, and about 1 in 5 caregivers are caring for someone with lung cancer. (Many of these have other forms of cancer as well.)

Fears of getting COVID-19 and feelings of acute vulnerability were common among the responses of lung cancer patients and caregivers. About one third of them expressed concern about getting COVID-19. Among those, about a quarter were specifically worried about dying (or about their loved one dying) from the virus. Stage 4 patients and their caregivers expressed these fears most often.

“I worry that either I or my husband will get the COVID virus and because of his health, he might not survive,” wrote a British Columbia caregiver for her husband, who has multiple cancers, lung cancer among them. “All the worry, pain, time, effort to recover might be in vain if he gets sick with COVID.”

The worries of lung cancer patients and caregivers are founded in reality. Lung cancer patients who contract COVID-19 have been found to be more likely to have a more severe form of the disease, and more likely to die from it—compared to patients with other types of cancer as well as compared to the general population.

The COVID-19 and Cancer Consortium (CCC-19) has found that lung cancer patients have the highest morbidity rate of all cancer patients who get COVID-19, at 26% – compared to 16% for cancer patients overall (within a median follow-up period of 30 days). The CCC-19 is a consortium that gets its data from 114 participating institutions.

A study of 102 lung cancer patients diagnosed with COVID-19, published in June, found a similar result: of the patients studied, 25% died within the study period. Cancer-specific features did not seem to affect the severity of COVID-19, but other pre-existing characteristics did – such as smoking history and hypertension.

Another source of anxiety for many patients and caregivers is their greater vulnerability to infection because of having a compromised immune system. A weakened immune system is a result of chemotherapy, or of any other cancer treatments that are immunosuppressive. This risk is not specific to lung cancer, but it compounds other fears that lung cancer patients have.

Many patients remain dependent on in-person appointments for receiving treatments and getting tests. For some, these appointments are a cause for anxiety as possible points of contact with the virus—especially if they or the person they care for is older. A caregiver for a lung cancer patient in Ontario wrote: “I’m concerned [my mother will] get the coronavirus and also could pass it to my dad, who is 80. She had to go to a busy hospital for updated scans and she did say it was run very well, but it’s still worrying.”

In general, respondents were much more concerned about getting the care they need than about avoiding hospitals for the sake of avoiding the virus. Across all patients surveyed (this data is not broken down by cancer type), 51 percent were worried about being able to get emergency room care during the pandemic, and 12 percent avoided going to the emergency room for cancer-related symptoms, for fear of getting COVID-19. Caregivers were more concerned on both fronts: 72 percent were worried about being able to take the person they care for to the ER, and 26 percent avoided going to the ER for cancer-related symptoms.

These two worries are not mutually exclusive, however—many survey respondents expressed both. As a caregiver in Ontario for a patient with breast and prostate cancer put it, “I worry about [the person I care for] going to appointments, but I also worry about skipping appointments. There needs to be a way to provide care and go the extra length to minimize any risk of COVID-19 transmission too.”

All these worries can add up to a tremendous amount of stress. A Nova Scotia patient with kidney cancer and lung cancer had been “already under extreme stress providing primary care to my loved one; both of us living with a terminal diagnosis; the added surreal effect of COVID has challenged every aspect of an already challenging situation.”

Lung cancer patients and caregivers—like all who are vulnerable to infection and in need of medical care—need concrete assurance from health authorities and from their doctors that their needs and concerns are being thought of and that their safe access to treatment is being preserved with care.