Back in February, Shelley Wendt felt a twinge under her arm and knew something wasn’t right.
Wendt, 63, was diagnosed with Stage 2 melanoma in January 2019. A surgeon removed the cancerous area. She was scheduled for follow-ups every three months to catch any changes. Melanoma can grow fast.
But by the time the swelling in her armpit prompted Wendt to call for an appointment, it was March and COVID-19 was shutting down medical offices for all but the most urgent cases. A receptionist told her — a little brusquely — that her doctor was seeing only emergency patients.
Wendt didn’t feel like an emergency. She didn’t want to bother the doctor unnecessarily, even though he’d told her to text any time. She’d spent 34 years in health care, most recently performing tests at Providence Alaska Medical Center, and an emergency meant a life-threatening situation. She was walking around, functioning.
The sore spot under her arm turned out to be a mass the size of a crabapple.
“Covid got me in another way,” Wendt said in early September.
‘March right in’
By the time Wendt saw oncologist Dr. Stephen Liu in May, the cancer had spread to “lymph, brain, lung — everything,” she said. “I could have been persistent and I should have been persistent and call the doctor directly. I dropped the ball on that because I didn’t want to be a problem.”
Liu during a recent interview said he would have asked Wendt to be seen right away if she’d reached him directly in March. He feels terrible she felt put off by his staff, he said. They, like other medical workers, were in the middle of a stressful situation during a difficult time.
“Most patients, they think ’OK, I don’t want to bother my doctor so I’ll call the front desk.’ They don’t get satisfaction and they kind of feel ashamed,” Liu said. “I don’t blame her. I understand it.”
That’s why he gives out his cell number to all of his melanoma patients, he said. “And some of them will call, and some will just wait.”
Things happened quickly after that May appointment.
By early June, Wendt had two rounds of Gamma Knife radiation and brain surgery to remove a tumor on her cerebellum. In mid-June, she started a 2-year course of Keytruda, a medication that helps the immune system fight cancer. Jimmy Carter successfully took it to treat his metastatic melanoma five years ago.
She is upbeat now, but the weight of her decision not to push for an office visit is clear: delayed care led to a grave situation.
Wendt wants to make sure no one else lets this virus call the shots when it comes to medical care.
“I would say, march right in and be seen,” she said. “Don’t put anything off.”
Her situation is the sort of cautionary tale that public health officials hoped to avoid when the pandemic shut down medical and dental practices for all but urgent procedures back in March.
Alaska in mid-March required health-care providers postpone or cancel “non-urgent or elective” procedures to reduce the spread of the novel coronavirus and preserve scarce equipment like masks and gowns. That mandate was revised in April to add specific procedures that could be delayed, a list that ranged from some cardiac and cancer care to abortion.
The state began to allow non-urgent procedures again in early May. The state’s chief medical officer, Dr. Anne Zink, urged Alaskans to maintain routine screenings and get health issues checked out.
Medical and dental providers here now say they’re seeing patient numbers rise despite the presence of the virus. Forty Alaskans have died with COVID-19, though the state has one of the country’s lowest death rates.
But especially in the first few months of the pandemic, some patients avoided even urgent care out of fears they’d catch COVID-19, according to providers at medical offices and hospitals interviewed for this story.
Nationally, in the first 2 1/2 months of the pandemic, emergency visits declined 23% for heart attack, 20% for stroke, and 10% for hyperglycemic crisis, according to a June report from the Centers for Disease Control.
Those same trends held true in Alaska.
“Particularly the first month, we saw a number of deaths and adverse outcomes related to COVID fear,” said Dr. Steven Compton, a cardiologist and president of the Alaska Heart & Vascular Institute.
Several patients stayed home for two or three days even as their chest pain worsened, Compton said. When they finally relented and showed up at the emergency room, they died there.
They all told the same story, he said. “Well, I didn’t want to come in because I was sure I’d get COVID.”
Another patient in heart failure refused to come into the office, preferring to talk via telemedicine, Compton said. Her status worsened to the point where it required hospitalization and drug treatment.
But a doctor who can’t see that kind of patient in person can’t do much more than tinker with their prescriptions, he said. That was on a Friday. The patient was found dead in bed Sunday morning.
The risk of acquiring COVID-19 infection in the hospital is estimated at less than 1%, and the mean risk of death from the virus also appears less than 1%, according to a July article in the Journal of the American Medical Association Cardiology. The article’s authors estimated the probability of dying of a heart attack without treatment at greater than 30%.
“COVID is a huge thing,” Compton said. “But cardiovascular disease still kills more people in the U.S. than COVID has. The rate of death is still higher. So we still have to take all these other things very seriously.”
‘Get your screening’
A visit to the doctor or dentist these days involves a series of COVID-19 prevention measures such as pre-appointment screenings, temperature checks at the door, and patient separation and sanitizing protocols.
Still, the dampening effects of the virus on medical visits linger.
Providers at Providence Alaska Medical Center are still seeing instances where patients are delaying care though not as frequently as they did between March and July, a spokesman for the Anchorage hospital said.
Radiation oncologist Dr. Clare Bertucio described a discovery earlier in the pandemic that could lead to harder-to-treat cancers going forward: Fewer early-stage cancers detected in the first three months of the pandemic because people weren’t getting screenings like colonoscopies or mammograms.
“The difference between catching something early and something late is exactly the story you just described,” Bertucio said, after hearing about Wendt’s situation. “It’s just a travesty.”
The most important message is one that continues to this day, she said: “Get your screening. The difference between having a colonoscopy where they find an early polyp that can just be removed and chemo, radiation and surgery for colon cancer, it’s huge. They’re not even on the same page.”
A lonely path toward hope
The receptionist she spoke with in March could have done a better job triaging patients who needed care, Wendt said, but she takes responsibility for what happened.
“I didn’t want to be one of those crazy people who just bully their way into a situation yelling and screaming,” she said. “I wanted to be respectful.”
Due to COVID-19 protocols, Wendt endured brain surgery without friends to accompany her into Providence Alaska Medical Center. Discharged 24 hours after the operation and still blurry from powerful post-operative medicines, she momentarily feared she’d get left on the curb, she recalled, laughing at the memory.
“They’re just going to put me outside!’” Wendt remembered thinking. She complimented the staff at Providence and their work in a high-risk environment.
These days she goes to appointments alone.
“It’s very strange,” she said. “It’s good, but it’s an empty feeling.”
The disease that stole treatment time from her needs to be respected, Wendt said. Things are supposed to be different, at least for now.
But, she added, that shouldn’t mean sacrificing other parts of your health.
“All the offices and clinics, they’re taking all the precautions they are able,” Wendt said. “You’re probably more at risk going to Carrs and Fred Meyer than you are going to outpatient or inpatient because they’re trying so hard.”
Wendt is hoping her treatments lead to total remission. Scans this week showed the treatment seems to be working.
Liu said he didn’t see anything in her brain or her lungs and the mass in her armpit was half its original size.
“She’s actually doing quite well,” he said.
Wendt hopes to travel this winter. Her sisters live out of state. Her son graduated from the University of Alaska Anchorage earlier this year but has yet to have a party. She takes new joy from the angle of light on her walks.
“I still have a lot of things I’d like to do,” she said.