The Unique Devastation of Cancer in a Pandemic
During a pandemic, cancer is all the more terrifying, uncertain, and lonely
Emily Dolley had accumulated symptoms for months. Her fatigue felt unshakable, her throat often sore, and her voice increasingly scratchy. As Covid-19 peaked in Michigan, doctors dismissed Dolley’s concerns as allergies or a cold, and she was told she had to wait until summer for an ultrasound, and even longer for biopsies or blood work. By the time she got her diagnosis, the cancer had spread from her thyroid to her lymph nodes.
Because of the pandemic, Dolley couldn’t bring anyone along to the appointment where she got her diagnosis. When she began to cry at the news and wiped away her tears, the doctor instructed her not to touch her face. As she left the building, passing by Covid-19 screenings at its entrances, Dolley’s new reality set in. “Now I had to worry about people who could get me sick on top of cancer,” she recalls. “I had a total meltdown. I was scared. I was alone. I was absolutely furious.”
Though all she wants is her friends and family close by, Dolley will quarantine until her thyroidectomy, scheduled for mid-August. She doesn’t know yet whether her husband will be allowed to hold her hand before surgery, or if he’ll just drop her off at the door. By restricting her access to everything from testing to emotional support, she says, Covid-19 has made cancer especially scary and lonely. “At times I do feel that Covid is more important than me and my cancer. Covid is always first,” Dolley says. “It is just making a very difficult situation so much more difficult.”
Oncologists, too, say the high-stakes work of treating cancer has become even more precarious during the pandemic. Over the course of 2020, cancer specialists have struggled to understand how to protect their patients, whose immune systems are compromised by therapies like chemotherapy and radiation. “The burning question,” says Jeremy Warner, MD, MS, an oncologist at the Vanderbilt-Ingram Cancer Center in Tennessee, “is can we treat our patients the same way now as we did before?” What’s worse: potential Covid-19 exposure, or delayed treatment?
“It’s like getting attacked from the inside and the outside. What’s safe? Nothing.”
People with cancer are all too aware of the risks of treatment, delayed or otherwise. Don Williamson, a 55-year-old retiree in Georgia, underwent seven weeks of radiation from March to May for his prostate cancer. “It’s a little bit nerve-wracking not knowing if you were going to get the virus, but knowing you need to get treatment,” he says.
And as the pandemic progresses, people with cancer told me, feelings of isolation and fear have only fortified. Over the last six months, 30-year-old Katy Aiello has undergone chemo, radiation, and a partial mastectomy and lymph node removal. When she’s not in treatment to fight her breast cancer, she’s holed up in her apartment, avoiding Covid-19. “It’s like getting attacked from the inside and the outside,” Aiello says. “What’s safe? Nothing.”
On a regular basis, oncologists must carefully balance hypothetical risk and benefit. What treatment could maximize someone’s recovery with minimal side effects?
The answer to that question is life-defining for patients. Armed with reason for hope, oncologists will aggressively pursue treatment despite potential hazards. But once remaining options seem more likely to harm than to help, they may counsel for hospice care. “Obviously when we give treatment, we hope it’s going to work,” says Sam Rubinstein, MD, a hematologist at the University of North Carolina’s Lineberger cancer center. “We can’t tell on the front end. It’s not always obvious that the benefit outweighs the risk. And it’s not always true.”
Covid-19 makes that equation even harder to balance. At the pandemic’s onset, health care providers delayed and canceled all but the most urgent treatments and surgeries. Initially, it seemed worthwhile to keep people out of hospitals, for their own safety and to preserve personal protective equipment (PPE). Now, Rubinstein says, “The script has flipped.”
In May, Rubinstein and Warner co-authored an observational study in The Lancet of more than 1,000 people with both cancer and lab-confirmed coronavirus. Predictably, they found that patients with active cancer did worse (although those whose cancer was stable or responding to treatment did better than the most fragile and deteriorating patients). But anti-cancer therapy itself — even if it involved toxic chemotherapy or invasive surgery — did not seem to increase a person’s risk of death, they found. Simply put: Continued cancer treatment doesn’t seem to put people with cancer further in harm’s way — but pausing care, and allowing a cancer to progress unchecked, could.
“We need to keep treating, even in the face of this,” says Trisha Wise-Draper, MD, PhD, associate professor and oncologist at the University of Cincinnati Cancer Center. “Cancer never stops.” In July, Layne Weatherford, PhD, a postdoctoral fellow who works with Wise-Draper presented preliminary findings suggesting immunotherapy (which activates the immune system against cancer) doesn’t worsen complications for people with cancer infected with Covid-19.
“The impact of Covid is not going to be seen now. It will be reflected in survival in the next five or 10 years.”
“Our advice keeps changing. I think that’s been the hardest part for patients,” says Wise-Draper. “They’re watching science unfold in front of their eyes.” She says some people have been too afraid of Covid-19 to come in for treatment. Now they’re hearing that staying away, and putting off care, could be even more dangerous than the coronavirus. “I’m super frustrated. The shifting of what is and isn’t high risk is very unclear to a lot of us,” says Aiello, who has breast cancer. “You want answers and no one has them.”
Oncologists are also deeply worried about the cancer patients who don’t know they’re cancer patients yet.
During the early and widespread lockdowns, routine visits such as dental appointments, mammograms, pap smears, and annual physical exams were delayed. “Everyone was afraid of being overwhelmed,” says Fabio Moraes, MD, a radiation oncologist at Kingston General Hospital in Ontario, Canada. “It was about trying to protect the system from overloading.” Unfortunately, all of those cases are also lost opportunities to catch cancer early — and research has begun to reveal the potential cost of putting them off.
In the United Kingdom, 3,600 additional lives could be lost to breast, colorectal, esophageal, and lung cancer over the next five years due to Covid-19-related delays in diagnosis, according to findings published in The Lancet in July. Another July Lancet study suggested delays as short as two months could be enough for early stage tumors to progress from treatable to untreatable.
“We’re pretty sure there will be an increased wave of cancer cases coming,” says Moraes. “The impact of Covid is not going to be seen now. It will be reflected in survival in the next five or 10 years.”
Gaby Berkman, a 31-year-old from near Boston, was surrounded by family during her first week of chemo at the end of February, shortly after her stage 3 Hodgkin’s lymphoma diagnosis. “It felt like everyone was there and I wouldn’t be alone through it,” she says.
During the second round in early March, Covid-19 was still a distant rumble. But by the third round, two weeks later, Berkman asked her mom to stay home, and the number of chairs in her infusion room dropped from eight to four. Her husband dropped her off outside for the fourth infusion. “It just felt so unfair that I was going through this huge medical hardship,” she says, “and Covid was dictating how it was happening to me.”
When doctors told Berkman in late May she was in remission, the news felt flat, she says. Instead of rejoicing, she’ll remain in isolation for the foreseeable future. Don Williams, similarly, did not celebrate his recent remission, which he learned about the day his 79-year-old mother fell ill with Covid-19.
“It just felt so unfair that I was going through this huge medical hardship and Covid was dictating how it was happening to me.”
Few understand the often-terrible intersection of Covid-19 and cancer better than Megan Hosey. At 37, Hosey is in remission from breast cancer. She is also a rehabilitation psychologist at Johns Hopkins and has spent time counseling people in the hospital with the coronavirus.
“Cancer is out of your control, and so is Covid,” Hosey says, pointing to one of many overlapping similarities between Covid-19 survivors and cancer survivors. Both groups have also suffered the cost of increased isolation during the pandemic — a reminder to oncologists and Covid-19 responders alike that a person’s mental health requires just as much tending to as physical symptoms do.
“We’re doing what we need to protect our patients — and we’re there to take care of them too,” said Robin Williams, a breast surgeon at Saint Thomas Medical Partners in Nashville. “They still need care, even if it’s in the midst of a pandemic.”