Over the summer of 2019, Nadege noticed one of her breasts was suddenly very red and inflamed. Unable to feel a lump, a telltale sign of breast cancer, her doctors initially thought she had some kind of infection. It took until September for the then-41 year old to be diagnosed with a rare form of inflammatory breast cancer, an invasive cancer that often goes undetected in mammograms because it doesn’t look like other kinds. Hers is a particularly aggressive cancer, with an average 39% five-year survival rate.
She steeled herself to manage this diagnosis with her husband and twin daughters by her side. After five months of chemo, Nadege, now 42, had a single mastectomy in February, and prepared to start radiation treatment in March at the Dana-Farber Cancer Institute in Boston. Then COVID-19 hit, making everything harder.
Being immunocompromised, Nadege was afraid to even take a walk in her Massachusetts suburb. Both cancer and cancer treatment make people more likely to develop a severe COVID case, and possibly be infectious longer. "I was going [to the hospital] every day for radiation and I was so afraid of catching the virus,” she says. Her family could no longer accompany her during treatment, so she made the 90-minute round trip by herself. “I know they screen everyone [for COVID], employees and patients, but I was still worried."
As the pandemic went on, her options were limited: delay her necessary treatment, or continue her regimen and face the COVID risk. “I knew if I got this virus, it would be fatal, but I wanted to make sure my treatment did not stop," she says.
In the early days of the coronavirus pandemic, many Americans were similarly concerned about seeking medical attention for anything other than COVID. Hospitals and doctors’ offices have shown that following appropriate protocols — like keeping patients socially distanced, and ensuring all patients wear masks and all staff wear personal protective equipment (PPE) — can prevent the spread of COVID-19 even in a medical setting, and that patients should not be concerned about coming in for evaluation. Still, nearly half of Americans reported delaying or skipping medical care because of coronavirus concerns, according to the Kaiser Family Foundation, with women doing so at higher rates than men. People delayed medical treatments because of cost pre-COVID, so it’s easy to rationalize putting off a doctor’s visit for after the pandemic — even though that might not be until late next year or later, and doing so may come with significant consequences.
"Most women would normally get medical attention after just a few weeks of abnormal bleeding. But people are saying that they have been experiencing this symptom for a long time."
According to research published in Obstetrics and Gynecology this month, looking at Kaiser Permanente Northern California data, endometrial cancer diagnoses went down 41% during the first three months of the pandemic. What’s more, patient calls about abnormal bleeding, a common sign of the cancer, decreased by 33%, too.
Dr. Betty Suh-Burgmann, a gynecological oncologist with the Kaiser Permanente Group of Northern California specializing in cervical, endometrial, and ovarian cancers, and lead author on that research, affirms that it wasn’t because people didn’t get cancer during this period. “Compared to the data from the equivalent time the year before, this tells me primarily that women felt scared to complain,” Suh-Burgmann tells Bustle. “A hospital or doctor’s office seemed like a bad place to be.”
Now, over six months into the COVID-19 pandemic, Suh-Burgmann has noticed the number of patients coming to her office with abnormal bleeding and pelvic pain has gone back to pre-March levels, at least anecdotally. But her patients say they’ve been having symptoms for longer — sometimes a full six months — and were concerned about coming in for evaluation until now.
“Most women would normally get medical attention after just a few weeks of abnormal bleeding. But people are saying that they have been experiencing this symptom for a long time,” she says. “[They] finally got scared enough or things got worse enough where they felt that they just couldn’t wait any longer.”
The majority of uterine cancers are slow growing, so a three or four month delay in diagnosis isn’t likely to impact a person’s overall prognosis, Suh-Burgmann says. But anywhere from 15-20% of uterine cancers are aggressive subtypes that can spread rapidly. For these cases, any delay in diagnosis and treatment could seriously impact a person’s chance of surviving the disease. Early detection is key for treating most cancers, says the American Cancer Society, particularly in those cancers that primarily affect women — breast, colorectal, cervical, skin, and ovarian cancers, among others.
Suh-Burgmann anticipates that the impact of delayed cancer diagnoses will be one of the most significant effects the coronavirus has on the death rate in America. “We are seeing so many negative health impacts and excess deaths. A lot of that is because of unrecognized COVID cases, but I think it also reflects a failure to care for other medical conditions.” That people aren’t seeking out preventative care, she says, “may have as big of an impact [on excess deaths] as COVID itself.”
Suh-Burgmann says otherwise healthy young women should know that general health maintenance is just as important as it was pre-pandemic, if not more so. “It’s in people’s best interest to not delay investigating other health problems. The benefit of getting checked out if you have abnormal symptoms greatly outweighs the risk of COVID.”
As Nadege can attest, the ability to get life-saving treatment, even during a pandemic, is an immense privilege. “I would be hooked up to the radiation machine and I would say, ‘God, you see I need this treatment, so please help me make it through this difficult time,’” she recalls. “I knew this treatment was going to save my life and keep me going.”