Yvette Lowery usually has her annual mammogram around March. But last year, when the pandemic was gaining momentum and medical facilities were closing, the center she is going to canceled her appointment. No one could tell her when to reschedule.
“They just said to keep calling, to keep calling,” said Lowery, 59, who lives in Rock Hill, SC
In August, Mrs. Lowery felt a lump under her arm, but still hasn’t been able to get an appointment until October.
Eventually, she was diagnosed with stage 2 breast cancer, started chemotherapy in November and had a double mastectomy this month.
“I have seen many patients at an advanced stage,” said Dr. Kashyap B. Patel, one of Lowery’s doctors and chief executive of Carolina Blood and Cancer Care Associates. If her cancer had been detected in May or June, it probably would have been detected before it spread, said Patel.
Months of blockages and waves of rising cases from Covid over the past year have closed clinics and test labs, or reduced hours elsewhere, resulting in sharp declines in the number of tests, including breast and colorectal cancer, experts said.
Numerous studies have shown that the number of patients examined or diagnosed with cancer fell during the first months of the pandemic. As of mid-June, the rate of breast, colon and cervical cancer screening was still 29% to 36% lower than its pre-pandemic levels, according to a data analysis from the Epic Health Research Network. Hundreds of thousands of fewer exams were performed last year than in 2019, according to data from the network.
“We haven’t updated yet,” said Dr. Chris Mast, vice president of clinical information technology at Epic, which develops electronic health records for hospitals and clinics.
Another analysis of Medicare data suggested that, as Covid’s cases increased during certain periods in 2020, cancer scans declined. The analysis – conducted by Avalere Health, a consulting firm, for the Community Oncology Alliance, which represents independent cancer experts – found that test levels in November were about 25 percent lower than in 2019. The number of biopsies, used to diagnose cancer, decreased by about a third.
Although it is too early to assess the full impact of exam delays, many cancer experts say they are concerned that patients are arriving with more serious illnesses.
“There is no doubt in practice that we are treating patients with more advanced breast cancer and colorectal cancer,” said Dr. Lucio N. Gordan, president of the Florida Cancer Specialists & Research Institute, one of the nation’s largest independent oncology groups. He is working on a study to see whether, on the whole, these missed tests have resulted in more patients with advanced cancer.
And while the number of mammograms and colonoscopies has recovered in recent months, many people with cancer remain undiagnosed, doctors report.
Some patients, like Lowery, did not get an appointment easily after clinics reopened due to pent-up demand. Others skipped regular tests or ignored worrying symptoms because they were afraid of becoming infected or after losing their job, could not afford the cost of a test.
“Covid’s fear was more tangible than the fear of losing a cancer-screening screen,” said Dr. Patrick I. Borgen, the chief of surgery at Brooklyn’s Maimonides Medical Center who also runs his breast center. His hospital treated a large number of patients with coronavirus from the beginning that “we are now associated with Covid Hospital,” he said, and healthy people have moved away to avoid contagion.
Even patients at high risk because of their genetic makeup or because they already had cancer missed critical tests. Dr. Ritu Salani, director of gynecological oncology at UCLA Health Jonsson Comprehensive Cancer Center, said that a woman, who was at risk of developing colon cancer, had a negative test in 2019, but did not go to her usual exam last year because of of the pandemic.
When she went to see her doctor, she had advanced cancer. “It is a devastating story,” said Salani. “Screening tests are really designed when patients are not feeling bad.”
Ryan Bellamy was in no rush last spring to reschedule a canceled colonoscopy, although the presence of blood in his stool had prompted him to research his symptoms. “I really didn’t want to go to the hospital,” said Bellamy. He decided that he was unlikely to have cancer. “They are not following me, so I’m fine with Google,” he told himself.
A resident of Palm Coast, Florida, Bellamy said that after his symptoms worsened, his wife insisted that he get tested in December, and he had a colonoscopy in late January. With a new diagnosis of stage 3 rectal cancer, Mr. Bellamy, 38, is undergoing radiation treatment and chemotherapy.
Colon tracking remained significantly lower in 2020, decreasing about 15 percent from 2019 levels, according to data from the Epic network, although general examinations have dropped 6 percent. The analysis looked at exams in more than 600 hospitals in 41 states.
Lung cancer patients were also slow to seek appropriate care, said Dr. Michael J. Liptay, president of cardiovascular and thoracic surgery at Rush University Medical Center in Chicago. A patient underwent imaging tests that showed a spot on his lung and he was due to be followed up as soon as the pandemic hit him. “The investigation and additional care has been delayed,” said Dr. Liptay. By the time the patient was fully evaluated, the cancer had increased in size. “It was not a good thing to wait 10 months,” said Dr. Liptay, although he was not sure whether previous treatment would have changed the patient’s prognosis.
Just as past economic downturns have led people to forgo medical care, the slowing economy during the pandemic has also discouraged many people from seeking help or treatment.
“We know there are cancers out there,” said Dr. Barbara L. McAneny, executive director of New Mexico Oncology Hematology Consultants. Many of their patients are away, even if they have insurance, because they cannot afford deductibles or co-payments. “We are seeing this, especially with our poorest people who are living on the edge, living on wages for wages,” she said.
Some patients ignored their symptoms for as long as they could. Last March, Sandy Prieto, a school librarian who lived in Fowler, California, had stomach pains. But she refused to go to the doctor because she didn’t want to catch Covid. After having a telehealth visit with her primary care physician, she tried over-the-counter medications, but they did not help with the pain and nausea. It continued to decline.
“It got to the point where we had no choice,” said her husband, Eric, who repeatedly encouraged her to go to the doctor. With jaundice and great discomfort, she went to the emergency room in late May and was diagnosed with stage 4 pancreatic cancer. She died in September.
“If it weren’t for Covid and if we could have gotten somewhere before, she would still be with us today,” said her sister, Carolann Meme, who tried to persuade Mrs. Prieto to go to an academic medical center where she may have entered a hospital. clinical trial.
When patients like Prieto are not seen in person but treated virtually, doctors can easily ignore important symptoms or recommend medications instead of having them come, said Dr. Ravi D. Rao, the oncologist who treated Mrs. Prieto. Patients can minimize the feeling of malaise or fail to mention hip pain, he said.
“In my opinion, telemedicine and cancer do not travel together,” said Rao. Although he also used telemedicine during the height of the pandemic, he says he worked to keep his offices open.
Other doctors advocated the use of virtual visits as a critical tool when office visits were very dangerous for most patients and staff. “We are grateful to have a robust telemedicine effort when people simply could not enter the center,” said Dr. Borgen de Maimonides. But he acknowledged that patients are often reluctant to discuss their symptoms during a telehealth session, especially a mother whose young children may be listening to what they are saying. “It is not private,” he noted.
Some health networks say they have taken aggressive steps to try to counteract the effects of the pandemic. During the initial request to stay at home last year, Kaiser Permanente, a large managed care facility based in California, detected a decreasing number of breast cancer tests and diagnoses in the northern part of the state. “The doctors immediately met” to start contacting the patients, said Dr. Tatjana Kolevska, medical director of the National Cancer Excellence Program Kaiser Permanente.
Kaiser also relies on its electronic health records to make appointments for women who have delayed mammograms when they make an appointment with their primary care physician or even wish to obtain a prescription for new glasses.
While Dr. Kolevska says she is waiting to see the data for the system as a whole, she is encouraged by the number of patients in her practice who are now up to date with her mammograms.
“All of these things implemented helped tremendously,” she said.