Treatments are being switched around; surgeries postponed. Oncologists are meeting new patients via Zoom or swathed in impersonal protective gear. Both the newly diagnosed and those with metastatic disease worry that going in for lifesaving treatments may just be the death of them. And researchers mourn as clinical trials are put on hold.
Such is cancer treatment in the time of this coronavirus pandemic.
It takes a lot to overshadow the second leading cause of death globally, but a dearth of data, shortage of tests and equipment, lack of any proven treatment or vaccine, and the speed at which the SARS-CoV-2 virus has spread have turned COVID-19 into a much bigger bogeyman than our “old friends” carcinoma, sarcoma, melanoma, lymphoma and leukemia. At least for the time being.
“I don’t want to go to chemo and radiation,” said Amy Sapien of Tampa, Florida, who discovered her breast cancer in February. “I don’t want to have to report to a medical facility. I have asthma and my son’s in treatment for a rare leukemia. I’m more scared of COVID than cancer. At least, we have statistics on cancer.”
Cancer is the devil we know. This new threat? The data is still limited. But it’s growing rapidly, thanks to lightning-fast analysis, open science and the heroic efforts of clinicians and scientists in China, Italy, South Korea and beyond.
Researchers worldwide are working furiously to crack this novel coronavirus, including many at Fred Hutchinson Cancer Research Center in Seattle, ground zero for the U.S. outbreak. From Dr. Trevor Bedford’s genetic maps and models to Dr. Keith Jerome’s serology work to the launch of two new national COVID19-cancer registries, the Hutch and its partners are leading the scientific charge in both research and clinical response to our new dark normal.
“It’s very important to protect our staff and our immunosuppressed patients,” said Fred Hutch's Dr. Gary Lyman, a lead investigator on the COVID19-cancer registry study. “If cancer patients get infected, they’re more at risk for life-threatening complications. We want to avoid COVID-19 infection if at all possible.”
Lyman said oncologists across the country are reinventing cancer care for the COVID-19 era, rescheduling noncritical procedures, surgeries and visits; using telemedicine where possible; opting for oral medications over infusions if doable and rewriting policy on the fly to help keep high-risk cancer patients out of the ER and harm’s way.
“These are desperate times which require desperate measures,” he said.
Sapien, diagnosed at 40, had her scheduled single mastectomy this week. But her reconstruction was postponed and her request for the prophylactic removal of her other breast — a common practice — was deemed “elective” and denied.
“Doing a double [mastectomy] increases your operating room reservation, knocking somebody out of a spot,” she said. “They’re trying to use the OR for critical cases. Normally, I would have the choice, but this isn’t a normal time. And I get that.”
Dr. Julie Gralow, who serves as clinical director of the Breast Medical Oncology program at Seattle Cancer Care Alliance and does research for both Fred Hutch and the University of Washington, said she and colleagues are discussing surgery delays and treatment swaps with patients and rescheduling prevention screenings like mammograms, bone-density tests and colonoscopies.
“We are totally triaging,” she said.
Those with fast-growing breast cancers — think triple negative and HER2 positive — receive the exact same standard of care: preoperative chemotherapy. But those who have slower-growing cancers such as ER positive and HER2 negative will mostly likely be put on endocrine (anti-hormone) therapy first instead of having surgery.
“I’m still starting chemo if it’s warranted, but we’re doing the minimum amount of surgery and no reconstruction, not even putting in tissue expanders,” she said. “The more surgery, the higher the likelihood of complication or infection. Our priority at this time is to keep patients out of surgery and out of the hospital. We need to protect the OR space and the ventilators and the potential ICU beds, and we need to preserve resources like masks and gowns and gloves.”
Many patients can safely have their therapies delayed or switched around to avoid clinic visits and exposures, Gralow said, adding that there’s "good trial data” on using endocrine therapy preoperatively in postmenopausal women with breast cancer, the most common cancer in women in the U.S.
“In the vast majority of people, preoperative endocrine therapy stabilizes or shrinks the cancer,” she said. “We’ll aim to give it for three to six months to delay the surgery.”
Other breast cancer patients may safely have the order of treatments swapped, as “no trial has ever shown that the order of chemo and surgery impacts survival,” Gralow said.
Those with metastatic cancer, in treatment for life, might also be able to take a “drug holiday,” she said.
The COVID-19 & Cancer Consortium, or CCC19, is a collaboration of over 50 cancer centers around the U.S. and the world. Utilizing a REDCap survey tool, the CCC19 registry will rapidly gather data on patients with cancer diagnosed with COVID-19 — demographics, comorbidities, cancer treatment details and COVID-19 therapies — then disseminate any findings.
The Hutch’s Dr. Gary Lyman, who sits on the CCC19 national steering committee, said the idea is to “crowdsource information in order to optimally manage patients with both diseases.”
“Lives depend on the global community coming together to share their experiences,” said the Hutch’s Dr. Stephanie Lee, who serves as both president of the American Society of Hematology and chair of its Research Collaborative. “People with cancer are more vulnerable to the virus, but there is little understanding of how current or past treatment for hematologic malignancies changes that risk.”
“If you’re in a deep remission — no evidence of active disease — you might consider going off your therapy for three months,” Gralow said. “I’m doing that with a couple of my metastatic patients where I haven’t seen any mets for a couple of years.”
But delays are not for everyone.
Dr. Bernardo Goulart, a Hutch health services researcher and lung cancer oncologist at SCCA, said some patients need treatment right away.
“For patients with true invasive malignancies, postponing surgery — or even a diagnostic biopsy — endangers their outcomes,” he said. “Data suggests that each week of delay decreases the survival by 6% in lung cancer.”
Guidance for treating during this time has come from surgical societies and organizations like the National Comprehensive Cancer Network, or NCCN, and the American Society of Clinical Oncology, or ASCO, both of which have tweaked their treatment guidelines for the pandemic. Cancer and policy experts within the Hutch, SCCA, and UW Medicine, many of whom help shape national cancer care policy, have also penned their own cancer care management plan for the COVID-19 era, recently published in the NCCN’s scientific journal.
Infection is one of the biggest risks for cancer patients in treatment, whether it’s the common cold or worse. Chemotherapies and other treatments drastically weaken a cancer patient's immune system, practically sending engraved invitations to infections like COVID-19.
Not treating is also risky, creating a fraught choice for many oncologists: risk losing a patient to cancer or to an opportunistic COVID-19 infection. One recently likened treating cancer at this time to charting a course between the monsters Scylla and Charydbis.
— Dr. Julie Gralow, clinical director, Breast Medical Oncology program, Seattle Cancer Care Alliance
“A delay in treatment, when possible, is clearly in many patients’ best interest,” Lyman said. “But patients with acute leukemia, transplant patients, patients with small-cell lung cancers with a rapid doubling time — we’re going to have to go ahead and treat.”
Patients already in treatment when the pandemic struck need to remain in treatment, too — and there are plans in place to protect them all.
The NCCN, which sets cancer treatment policy, just created a set of short-term recommendations that call for the increased use of biologics known as granulocyte colony-stimulating factors (think Neulasta), which will help boost the white cell count of patients in chemo to minimize their chance of infection.
“When there’s no choice, we’ll be as aggressive as we can with both treatment and protection for our patients,” Lyman said.
Patients going in for treatment at most cancer centers are now checked for symptoms at the front door. At SCCA, anyone with symptoms is sent for secondary screening and evaluated for COVID-19 testing. The SCCA has also established a COVID-19 hotline as well as this resource page for patients with questions.
Gralow said some patients are actually thankful for the tweaks in their treatment plan.
“I talked to three new patients today and they were all relieved,” she said. “None of them wanted to come into the hospital right now. They were all older and are much safer harboring at home.”
For now, she’ll check in with them via telehealth. In a few weeks — “when it’s a lot safer” — she’ll bring them back to evaluate the treatment and talk surgery.
Telehealth has become part of Goulart’s practice, too. As have masks and full scrubs when he meets with patients. Though necessary, the changes have not all been easy, he said. Many of his patients are older and aren’t as familiar with the technology.
Physical distancing and masks contribute to the disconnect.
“The masks make it hard to bond,” Goulart said. “We’re trying to convey compassion to people at a very difficult time — when they’re first diagnosed or transferring to hospice. Human touch brings that extra element of comfort but we can’t provide that now.”
Nationally, patient advocates and those with stage 4 disease are questioning hospital policies that indicate they’ll be triaged in the worst way — denied a ventilator — should supplies run short. Seattle-area patient advocate Janet Freeman Daily blogged about the health have-nots who’d be left to die and the “horrible ‘Sophie’s Choice’” health-care providers were now being forced to make.
Others were more pragmatic.
“If you get sick and go to the emergency room and you have metastatic cancer,” one doctor advised via social media, “don’t say your cancer is terminal.”
— Breast cancer patient advocate Nancy Stordahl
Along with grief, the pandemic has brought a few innovations.
SCCA moved up the summer launch of its Acute Clinical Evaluation clinic, an after-hours urgent care service long sought by patients and providers. Now cancer patients will have a place to go — other than the ER — when they develop pain, fever, severe nausea or other treatment-related issues.
“The ACE clinic will be manned by nurse practitioners and will be able to do blood draws, imaging or give an infusion of fluids if necessary,” Gralow said. “We started last week and have already kept more than three dozen patients out of the ER.”
Cancer centers have also received “emergency pandemic waivers” that allow them to do telemedicine and be reimbursed for it. Gralow said that might not stick post-pandemic, “but we’ll have put a system in place so we know how to do it.”
“After this is over, I think we’ll end up doing more telehealth,” she said.
Another bright spot: research. Fred Hutch has dozens of researchers working on COVID-19 studies and is helping to orchestrate the launch of two new registries designed to crowdsource data on patients with cancer and COVID-19 to help clinicians better manage their patients in real time.
And while researchers in the Seattle Cancer Consortium have seen many clinical trials pause, the National Cancer Institute is mulling workarounds. In days to come, oral drugs may be shipped directly to patients and local docs, not trial-site physicians, who may be tapped to conduct patient assessments and collect specimens.
“We’re making lemonade out of lemons,” Gralow said. “But some of our clinical trials will take a huge hit. And we’re all going to take a big financial hit in the long run.”
Still, through cancer and now the novel coronavirus, providers and patients carry on.
Sapien, whose 7-year-old son Landen was already in quarantine due to multiple chemotherapies for his leukemia, remains undaunted — by cancer, by COVID-19 or by the delays in her treatment.
“I’ve been a social worker for 20 years so I’ve been exposed to a lot of adversity,” she said. “People have a lot of resilience. If we both survive cancer and COVID, I know we’ll come out the other side stronger and better. I’m trying to channel Dory right now; I even got a tattoo. Just keep swimming. That’s totally my anthem.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com. Just diagnosed and need information and resources? Check out our patient treatment and support page.
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