When the pandemic began in March, Tori Geib was finally stable, or so she thought. She had undergone the same chemotherapy treatment — her ninth course since her diagnosis with metastatic breast cancer in 2016 — for nearly a year.
In April, she received the results from a scan: Her cancer had progressed to her bones and her liver. She needed a new course of treatment to combat her spreading cancer, and her doctors at Ohio State University Hospital told her that her best bet was from a clinical trial.
But because of Covid-19, those promising clinical trials had been suspended. She was placed on a medication by I.V. in the hospital — the “next best thing.” Geib, 34, had an allergic reaction to that drug during treatment and she went into anaphylactic shock.
Her throat closed up and she could not breathe. She could feel herself beginning to pass out. “I thought I was dying,” Geib said in a video call interview. “It was terrifying.” Because of Covid-19, she could not have visitors (like her family) with her during treatment. The only person in the room as she lay helpless and terrified was a nurse.
The Covid-19 pandemic brought new, harrowing challenges to cancer patients. Some had their treatments delayed, but many others carried through. They experienced loneliness, had heightened concerns about their health and were forced to take precautions that might save their lives.
New challenges of treatment
After her allergic reaction, Geib felt hopeless.
“If this was my next best option and it’s not going to work, what is going to be next?” Geib said. “Do I even have a next?” Luckily, a synthetic version of that drug was available, and she continued treatment with it.
While cancer patients would normally be allowed to have family or friends accompany them during treatment, hospitals around the country have stopped allowing visitors in order to curb the spread of Covid-19.
“It’s hard enough to get diagnosed with cancer, under any circumstance, and then to lose your support is devastating,” said Dr. Dawn Hershman, an oncologist at Columbia University Medical Center.
In June, two months after she learned that her cancer had progressed, Geib was issued another update: Her cancer had progressed again in her bones and her lungs, and it had spread into her brain. She was alone when she received the news from her doctor.
“I have not had anybody there to hold my hand through it,” Geib said. “It’s kind of suck it up and do it on your own.” Geib lives with her parents in rural Ohio, about an hour away from her treatment center in Columbus. Before the pandemic, her mom would take her to treatment and support her.
Geib’s county had relatively few cases throughout the pandemic, but urban areas like Columbus have been rife with Covid-19. “Anytime I have to go to the city, it’s a new anxiety for me,” she said.
Precautions visiting a hospital
Preeti Vasudeva, 42, a Maryland-based wedding planner who was first diagnosed with stage 2 breast cancer in 2016, experienced similar anxiety about Covid-19.
“Look, I’m scared, I’m just going to have to be extra cautious,” Vasudeva said in a video call interview. “But it’s really important for me to stay alive. It’s really important for me to get this treatment.” For each visit to the hospital, which is every four weeks for her, Vasudeva would wear gloves, a mask and large goggles to protect her eyes. After leaving, she would wipe down her shoes with disinfectant and wear a garbage bag in her car in order to avoid contaminating her seat.
At one point, she wore a sweater in 92-degree heat to avoid physically touching any potentially contaminated surfaces in her treatment center at Georgetown University Hospital. (Last month, Vasudeva switched to a treatment center in Baltimore because her oncologist moved away.)
Vasudeva isolated herself. Her parents used to help her through treatment — her mother would sit with her in the hospital and her father would drive them both. Once the pandemic began, Vasudeva had no choice but to drive herself. She stopped seeing all family and friends. She stopped going to the grocery store.
There were times where she could not move after treatment, and could not get any help from family with daily chores like taking out the trash and walking her dog.
“Those first two months, I had a hard time getting out of bed,” Vasudeva said. “I was scared to even open my mail. It was a really dark period.”
Trevor Maxwell, 43, a stage 4 colon cancer patient, started a cancer support organization Man Up to Cancer, which encourages men to seek social support. Maxwell described living with cancer during Covid-19 as “a double punch of isolation.”
The risk of Covid-19
Dr. Hershman said cancer patients who had already started treatment or were about to start treatment were, for the most part, able to continue, despite the danger that Covid-19 may pose to their health.
Dr. Hershman said that many patients had their regimens slightly altered to make them safer during the pandemic. Some patients received treatments less frequently at a higher dose so that they could avoid frequent visits to the hospital, as well as having less frequent scans. Routine blood work before treatment was moved to a lab closer to the patient’s home.
“The cancer doesn’t stop during a pandemic,” said Shelley Fuld Nasso, C.E.O. of the National Coalition for Cancer Survivorship. “Across the board, providers in radiation oncology and medical oncology had to figure out how to make this safe for the patients and for the care team.” Fuld Nasso said many providers have implemented telehealth in order to reduce the patients’ risk of contracting Covid-19.
A number of studies have indicated that cancer patients with Covid-19 have higher mortality rates. One study of 800 cancer patients found that those with Covid-19 may have a mortality rate as high as 13 percent.
Dr. Hershman said that data on outcomes for Covid-19 in cancer patients is “extraordinarily biased” because it is unknown how many cancer patients actually contracted Covid-19 — many of the patients in studies are known to have the disease because they were hospitalized. “It’s hard to tease apart because the underlying patient population is so sick to begin with,” Dr. Hershman said.
For patients who required surgery for their cancer, doctors had to create an alternate plan, said Dr. Hershman. Many went through an intermittent treatment plan until surgery was possible in the hospital. Dr. Hershman said that studies show that for some cancers, delaying surgery with treatment does not affect health outcomes. For those for whom surgery was essential, Dr. Hershman said that a few operating rooms were available.
For some, holdover treatments were not enough. Jasmine Yang, a Canadian, was recommended surgery to treat her rare form of ovarian cancer in early April, CBC reported. She was given chemotherapy treatment until her surgery, which was postponed to May 4 because of the pandemic. Yang died two days before her surgery date.
Alex Dedmon, 31, a graduate student in Davis, Calif., saw the end of his long battle with cancer postponed because of a delayed surgery. After Dedmon’s diagnosis with stage 4 rectal cancer three years ago, he has gone through multiple surgeries and treatments, he said in a video call interview.
Ultimately, they were successful: He has been in remission for nearly a year now. His final surgery — an abdominal perineal resection surgery, which would entirely remove Dedmon’s damaged rectal area — was delayed two months because of the pandemic.
Although the surgery was considered relatively low priority compared to removing an active tumor, Dedmon had been experiencing significant pain because of an abscess, so much so that at one point he could not walk. His pain mostly subsided after an ileostomy procedure, but the abscess did not go away.
Dedmon viewed the surgery as “the last big hurdle I had to jump through” — and no small one at that. The surgery takes about eight hours, and patients are largely debilitated during the long recovery. He had put off finishing his graduate degree for several years because of his cancer, and he hoped that after the surgery he could finish his dissertation and graduate.
Dedmon had his surgery in mid-May, and he is still recovering.
Like Geib, many cancer patients look to clinical trials as potentially life-saving treatments. Due to restrictions from the pandemic, clinical trials have been cancelled or significantly altered.
Peggy Zuckerman, 71, of Los Angeles, a cancer survivor who now advocates for kidney cancer patients and reviews clinical trial designs, said that clinical trials have been forced to adapt during the pandemic. “Trials are written in a very rigid way that makes them more scientifically sound,” Zuckerman said in a video call interview. Requirements that participating patients have scans on a regular interval have been altered and check-ins with doctors have been changed to telehealth visits.
Regulatory requirements for virtual consents, shipping of medications and virtual visits with local labs were relaxed, said Dr. Hershman, in order to make clinical trials more accessible during the pandemic. At Columbia, she said that all research was paused from March to June, but doctors could apply for exemptions for patients to enter clinical trials.
After several surgeries, chemotherapy and immunotherapy, Maxwell, the founder of Man Up to Cancer, has stabilized — but he knows that clinical trials offer the most promising chance to extend life for those in his community.
“A lot of people that I’m friends with have been exploring clinical trials and just heard that trials that were planning on opening had been suspended,” Maxwell said in a video call interview. Stage 4 colon cancer has a five-year survival rate of 14 percent.
During the pandemic, Maxwell has continued treatment at a center near his home in Cape Elizabeth, Maine, but he has not stopped living life. “I certainly intend to live a long life, but every moment is meaningful when you’re a stage 4 patient,” he said. “We are very motivated to enjoy our lives.”