The impact of Covid-19 on mesothelioma patients and their families

(A version of this article was first published in the Mesothelioma Applied Research Foundation’s summer newsletter. The article has been updated with newly available information.)

In March of 2020, as Covid-19 wreaked havoc around the world, our community of mesothelioma patients and their families braced themselves. What would a pandemic mean for this community? Now, nearly two years later, we have a better idea of the impacts of this virus itself, and the impacts of restrictions due to the virus, on our patients, their families, and our bereaved community members.

Research into outcomes for cancer patients with Covid-19

Over the course of the pandemic, several studies looked into Covid-19 outcomes in patients with other cancers, such as lung, and noted that those patients were extremely vulnerable to poor outcomes were they to become infected. For mesothelioma specifically, the results of one small study were reported in September at the World Lung meeting. They similarly suggested that patients with pleural mesothelioma (affecting the lining of the lung) were at high risk for complications should they become ill. However, at the time of the report, the Meso Foundation cautioned interpretation of the study due to its very small numbers.

The study was conducted by Dr. Susana Cedres of Vall d’Hebron University Hospital and the Institute of Oncology in Barcelona, Spain. Dr. Cedres analyzed the records of 38 patients with malignant pleural mesothelioma tracked through the TERAVOLT registry.

Of the 38 patients, seven became infected with SARS-CoV-2 confirmed by a positive PCR test (as opposed to a rapid antigen test). Of those seven, two were undergoing active treatment (chemotherapy for one, and radiation therapy for the other). Six patients (out of seven) required hospitalization during which they were all treated with supplemental oxygen. Four patients developed bilateral pneumonia and four ultimately died as a direct result of Covid-19 (one additional patient died from causes unrelated to Covid-19).

Our community’s impacts

As for questions about how our community in particular has faired through this pandemic, in May of 2021, we sent a survey to our community asking open-ended questions. We asked about topics ranging from how Covid-19 affected their doctor’s appointments, treatment, clinical trials, scans, infusions, travel for treatment, etc., to how the pandemic affected their mental health. The goal was to learn more about each person’s individual experience.

To start, this survey confirmed something we already knew: our community is very diverse! While we saw some similar themes emerge, it is safe to say that the impacts of Covid-19 among this population varied considerably depending on whether the respondent was in active treatment or not.

Impacts for those undergoing active treatment

Aside from two respondents for whom treatment and scans were not at all affected by Covid-19, the rest shared a familiar story. Their medical oncologist appointments were largely moved to telehealth visits. This caused issues among those patients who used to travel out of state for treatment with experts, because due to licensing regulations, oncologists were generally unable to meet remotely with those patients. In addition, technical difficulties related to telehealth caused considerable frustration among patients. Most respondents, while grateful for the opportunity to at least “see” their oncologists, felt that visiting with them via telehealth simply “wasn’t the same as seeing a doctor in person.” One newly diagnosed patient’s diagnosis was delayed due to Covid-19 restrictions.

For most respondents, local appointments and, of course treatment infusions and scans, were held in person, but with added precautions such as temperature checks and Covid-19 testing. Precautions generally added to the time commitment required for each appointment. Often, our patients could not be accompanied by a loved one when attending appointments.

“Not having visitors has been tough at times, especially during chemo and for a post-op hospitalization.”

“Initial covid shutdown in March delayed a scheduled CT scan and eventual diagnosis by 3+ months, and hindered travel for a second opinion on surgery.”

Mental health impacts

Just like the rest of Americans, our community similarly suffered through the inability to spend time with family members and friends. The Mesothelioma Applied Research Foundation’s Symposium was also canceled taking away what is often the only opportunity for patients and their families to socialize with others who have “walked in their shoes.” Feelings of isolation, depression, anxiety were common among respondents. A recurrent theme was that our patients felt that they wasted a year of precious time.

“Too much isolation, and too much time wasted while health was at a level when life could have had so much more joy.”

“Biggest impact on terminal patient is lack of family time.”

Double heartbreak for our bereaved community

Family members of patients who passed away during the early stages of the pandemic found themselves largely alone through every step of their loss, including in their grief. Interpersonal support wasn’t possible for most, and funeral and memorial services had to be postponed, thus also postponing the grieving process.

“Having my husband so ill during covid was difficult. I had to screen everyone who wanted to visit us. Our own children had to visit with us while talking through our screen door visiting their Dad. I had to be extremely careful for I knew that if he contracted covid and had to go to a hospital, he would die alone.”