Coronavirus Could Upend Cancer Trends in the U.S.

Liz Satterfield has a ritual for every time she returns home after leaving the house. Diagnosed with metastatic breast cancer in 2016, the Kirkland, Washington resident recently learned that the cancer that had spread to her brain in 2018 was still growing. Throughout the pandemic, she’s had to visit the hospital at least once every three weeks, often more frequently, for treatments to control her disease.

“I have a pair of shoes in a paper bag that I keep in the trunk of my car or a rack in the garage. I only wear those shoes when I’m going in to get treatment,” she says. “When I come home, I strip in the garage and put everything right in the wash. I don’t enter the house with anything that I was wearing at the cancer center. It’s the way I’m able to control what I can control in this situation, and gave my partner and me some peace of mind.”

While COVID-19 has upended everyone’s life, the novel coronavirus’ impact on cancer patients is especially disruptive. Any infectious disease that taxes the immune system is high on their must-avoid list—especially for those getting chemotherapy or radiation treatments, both of which can weaken natural defenses. So that leaves cancer patients caught in the middle of two terrifying diseases.

Nearly 17 million people in the U.S. are living with cancer, many of whom, like Satterfield, are currently being treated for their disease, and forced to make these difficult calculations weighing their risk of cancer against their risk of getting COVID-19. Studies of cancer patients who become infected suggest that their death rate is higher—ranging from 13% to 28%—than those without cancer (though these numbers continue to change as more data become available).

Learn the latest research-backed insights with TIME’s guide to preventing cancer.

That risk could have a lasting impact on cancer rates and deaths in coming years. Between existing cancer patients who are concerned about the risk of COVID-19 and either delay or skip treatments, and those who have not yet been diagnosed but are reluctant to see their doctor for possible cancer symptoms, experts say both death rates and new cases may creep up. “There have been people who are scared to death to even come near the cancer center,” says Dr. Leslie Busby, a partner at Rocky Mountain Cancer Centers.

A crude forecast of how the pandemic might affect deaths from just breast and colon cancers alone conducted by researchers at the National Cancer Institute (NCI) predicts 10,000 additional deaths from these two cancers on top of an expected 1 million over the next decade, based on the assumption that screenings are stopped for only six months. That model does not account for people who have not yet been diagnosed and are delaying seeing their doctors—and as a result, may not be diagnosed until their cancers are more advanced and harder to treat. “We don’t know what the level of disruption to care is going to be, but I think it has already been quite significant, and will last a while longer,” says Dr. Ned Sharpless, director of the NCI, who commissioned the prediction.

He notes that increases in incidence and deaths from cancer due to COVID-19 may also be hidden, complicated by the fact that incidence, for example, may even dip for a while if fewer people are getting screening and fewer cancers are actually detected. Mortality may also be confounded by the fact that most cancer deaths are among older patients, and older patients are also at higher risk of dying from COVID-19 complications, so the pandemic could cause total cancer deaths to actually decrease tempoerarily.

Given those confounders, and the fact that many cancers take years to develop, it won’t be clear exactly how COVID-19 has affected cancer rates and deaths for many years yet.

“When you think of cancer care, there is very little that is elective,” says Dr. Robert Keenan, chief medical officer and vice president of quality at Moffitt Cancer Center in Tampa, Fl. Patients get chemotherapy as an intravenous infusion, which needs to be dosed and administered under medical care, and radiation treatments require calibrated doses from certified technicians in hospitals. And once patients have started chemotherapy or radiation regimens, they usually undergo treatment for several weeks, with each cycle building on the last to give them the best chance of wearing the cancer down and stopping malignant cells from growing and spreading.

As the pandemic began to surge, cancer doctors typically evaluated each of their patients to decide whether they needed to come in for their treatments or whether they could safely put off the chemotherapy infusion or radiation session for a week or more. Nancy Fleming, a former hospital pharmacist who was diagnosed with small cell lung cancer in 2019 after surviving breast cancer in 2003, receives an infusion of an immunotherapy drug once a month at the Dana Farber Cancer Institute in Boston, Mass. When cases of COVID-19 surged in Boston in April, her oncologist, Dr. Jacob Sands, suggested she put off one of her infusions by a week. He says he made these types of decisions on a case-by-case basis, depending on how well each individual patient was doing and how well-controlled their cancer was. “For somebody who has ongoing disease control, where everything is stable, and they had been on therapy for more than a year, those were cases where we would discuss delaying treatment by a week, two weeks or even three weeks,” Sands says.

Convincing them to continue their treatments wasn’t easy, however. “There was a lot of virtual and telephonic hand-holding,” says Keenan. “We tried to put in place measures to create an environment that let patients know that [the cancer center] was as safe a place as any to come in for their treatment.” At many hospitals and cancer centers, patients and staff have been screening patients and staff for fever and COVID-19 symptoms, and many restricted visitors from coming with the patients for their treatments. Any care that could be provided virtually was moved to video or telemedicine, which cut down on the density of people. At Moffitt, Keenan says, clinic visits dropped by 40% to 50%, and patient appointments were scheduled to avoid pile ups waiting rooms. At Dana Farber, Sands says “Patients were essentially able to get right into a private room when they showed up and we were able to completely isolate people so they were not sitting next to each other in the waiting room.”

Such cues are critical to putting cancer patients’ at ease, agrees Busby, who asked non-essential staff to work from home. “These practices helped to both lower the risk of spreading COVID-19 and sent signals to our patients that we were doing the best we can to protect their health,” he says. Discussing these precautions helped to convince some wary patients to continue their treatments.

One such policy, however, was harder for patients to accept. Many cancer centers stopped allowing visitors to come with patients during their treatment appointments, which can stretch for several hours since the chemotherapy infusions themselves typically take at least 30 minutes. “It’s such a comfort to have family there,” says Fleming. “When you are a patient, when you are ill, it’s sometimes hard for you to absorb everything you are hearing. It’s always good to have an advocate with you.”

For breast cancer patients, there were other options as well. At the University of North Carolina Lineberger Comprehensive Cancer Center, Dr. Lisa Carey says the pandemic changed the therapies she offered her patients. At the beginning of the pandemic, “for the patients whose cancers were hormone sensitive, I put them on anti-estrogen [pills] so we could tread water and keep an eye on the tumor for a couple months, while we waited for the [COVID-19] dust to settle before exposing them to an unknown level of danger of coming into the hospital for chemotherapy infusions,” she says. The oral treatment, normally given before or with chemotherapy for maximum effectiveness, allowed the patients to treat their cancer and not compromise their care while avoiding exposure to the risks of COVID-19 in the hospital. “The truth is, those things we did to protect them seemed to work,” Carey says.

Protecting patients from getting exposed to the virus also guides some of her decisions around how to provide chemotherapy. “If I have a choice between a [chemotherapy] drug that is given every week and a similar one that is given every three weeks, I now routinely use the one that’s given every three weeks,” she says. “Even if there are a few more side effects, if it reduces the number of times a patient has to come in, then this is a conversation I’m having with them.”

Similar adjustments are possible for radiation treatment in some cases. Normally, radiation therapy is broken up into smaller, daily fractions in order to preserve the healthy tissue around cancers from the toxic effects of single blast. For breast cancer patients, recent, albeit early studies that followed patients for five years, suggested that significantly shorter courses of treatment—given over five days compared to 30, for example—could be equally as effective in controlling the cancer. “Typically we wouldn’t embrace [such early results] in daily practice as quickly as we did except for the pandemic,” says Dr. Reshma Jagsi, deputy chair of radiation oncology at the University of Michigan. “But some patients were willing to take the risk of not having long term evidence on the safety and trust the five year data which was certainly compelling and intriguing.”

For the most part, cancer patients have understood the importance of continuing their treatment and of balancing their risk of cancer against their risk of getting COVID-19. In fact, says Busby, “it’s not so much our patients we worry about but the patients who are not ours yet.” Most hospitals canceled routine cancer screening appointments for things like mammograms and colonoscopies, which are essential for detecting cancer early. And many people who might have potential cancer symptoms and aren’t diagnosed yet, aren’t going to the doctor because of COVID-19 fears. If that’s the case—and only data on cancer rates in the coming months and years will provide the answer—it’s possible that both the number of new cancer cases and their severity will increase as a result of the pandemic.

“My concern is for the patients who have not yet been diagnosed with cancer; for those patients who delayed their screening; for patients who put off being examined for certain symptoms,” says Jagsi. “Those patients will be diagnosed at later stages and I do have great concern there that will change cancer-related treatment outcomes.” In recent years, advances in screening have helped doctors more regularly diagnose patients at earlier stages where their disease is still treatable and curable, Jagsi notes. “I fear that some COVID-19-related delays may compromise some of the advances we have seen.”

How deeply COVID-19 will cut into those gains won’t be clear until more data on new cancer cases becomes available in coming months. But most experts agree that “it’s hard to imagine that the pandemic would contribute to a better situation; it’s going to have to be worse,” says Carey.

In the meantime, patients are learning to accept the adjustments they need to make to ensure their treatments continue with as little disruption and in the safest way possible. Satterfield has had two COVID-19 tests because the chemotherapy she receives gives her a runny nose, cough and diarrhea—all symptoms of COVID-19 that are flagged when she is screened before entering the cancer center for her treatments. But she’s okay with that, and understands why it’s needed. For her, “the most challenging part is emotional. With any terminal illness, it’s there—I think, is this the way the world is going to be when I die? Is this how I see the end of my life? But I’m feeling better than I have in recent memory. As much as my health status doesn’t sound great, I feel great. And I’m thankful for that.”

Contact us at letters@time.com.