An already troubling medical prediction has turned out to be even more dire than the worst-case scenario model first promoted by experts.
Dr. Norman “Ned” Sharpless, director of the National Cancer Institute, said that there were “95 percent declines in various kinds of cancer screening–mammography, lung cancer screening, colorectal cancer screening, and Pap smears for cervical cancer,” during the pandemic. Sharpless made the remarks in an event hosted by The Washington Post.Read More
“And we’ve also seen delayed diagnosis. So, patients, you know, the incident of diagnosis of cancer has declined sort of for a couple of months during the pandemic by 50 percent,” added Dr. Sharpless. “There’s no reason to believe true cancer incidents went down by 50 percent. We think that’s just people who weren’t going to the doctor or weren’t getting routine care, and we believe many of those cancers are just going to be diagnosed now at later stages.”
SurvivorNet canvassed major cancer centers across the United States during the pandemic, and found that advanced-stage cancer diagnoses had increased because of delays in screening due to COVID-19.
“This is primarily seen in our screening population,” Dr. Robert Figlin, deputy director of the Samuel Oschin Comprehensive Cancer Institute at Cedars Sinai Medical Center, told SurvivorNet. “While we are most concerned with this occurring in our underserved patient population, we also are seeing this across all demographics. We are not documenting the frequency, but are concerned that future outcomes will be challenged as a result.”
Dr. Sharpless said that there is an active push to get Americans back in for screenings now that pandemic restrictions are easing up around the country. He also pointed out the immeasurable damage that has already been done.
“It’ll take years, perhaps even a decade to really understand the impact of the pandemic and these delayed screenings on cancer mortality,” noted Dr. Sharpless. “But we definitely have seen a bigger impact in terms of screening and care than we expected at the beginning of the pandemic.”
He then added: “And as I said, we thought those were sort of worst-case scenarios when we modeled them.”
Later in the discussion, Dr. Sharpless was asked about advancements in cancer research and the mistakes Americans are making when it comes to preventing cancer. It was not smoking or tanning as many might predict, but rather obesity.
“It’s clear that obesity causes or is strongly associated, perhaps in a causative manner, with many types of cancer, and those are the cancers in the United States that we’re seeing increases in incidence and increases in mortality, predominantly the ones associated with obesity,” Dr. Sharpless said. “And there’s, you know, a national epidemic of obesity, and this will continue to play out in terms of worsening cancer statistics if we don’t, you know, collectively do something about that as a country.”
Dr. Sharpless – who was appointed under President Trump – also expressed his gratitude for having the most powerful person in the White House as an ally during this time: the president’s wife.
“First Lady Biden has made this clear, that cancer care and cancer progress is one of her top priorities, and you know, again, it’s just wonderful to have an administration that backs that so forcefully,” said Dr. Sharpless. “She has spoken a lot about losing family members to cancer and then having friends who’ve been diagnosed with cancer, and I think she’s been a wonderful spokesperson for why this is still a problem and why we need to make progress.”
Cancer Screenings Are Critical
When it comes to catching a cancer diagnosis early, cancer screenings are a critical step in the process. By attending screenings regularly, doctors can check for signs of cancer in the earliest stages. This leads to more treatment options and a higher likelihood of entering remission.
Cancer screening recommendations can vary depending on the type of cancer, and your risk factors, so it’s important to pay attention to guidelines.
For example, it’s recommended that people with average risk get colorectal cancer screenings starting at age 50 and continue until 75-years-old. With breast cancer, guidelines recommend women with average risk should have annual mammograms between the ages of 45 and 54. So, it’s extremely important to both pay attention to these guidelines but also push for screening if you feel that something is wrong.
What Patients Who Delayed Cancer Screenings Should Do Now
With COVID-vaccination programs achieving success in many parts of the country and life heading toward greater normalcy, many in the United States are thinking about healthcare unrelated to the pandemic. And they should be, because many aspects of health maintenance took a significant hit in the last year.
Anne G. Walker, a clinical social worker in private practice in Palatine, Illinois, is taking stock of these issues professionally and trying to help people, both patients and caregivers, prepare for them. One of the first tasks at hand is to help those who are behind catch up with needed medical care.
“Anxiety about emergence and re-entry is something people are reporting in many aspects of life amid the pandemic, healthcare being one,” she told Survivior Net during an interview earlier this year. “I think we need to encourage patients to begin engaging again—choosing less intimidating interactions initially and building to the more challenging. Think of it as wading into the shallow end of a pool, rather than jumping in the deep end.”
Those worried that their providers will be frustrated with them for falling behind on screenings should remember that the providers, too, have been affected this past year.
“The pandemic has impacted everyone,” explained Walker. “And providers tend to be understanding and sympathetic regarding apprehension and are not in judgement of delays due to calibrating risk.” Hearing about COVID policies that a practice is following may also be a help. “The patient should ask a provider about the pandemic precautions and policies in their office,” Walker pointed out. “Most health systems have invested significant resources on safety practices for patients and continue to reduce volume in scheduling and waiting areas.”
In considering the prediction that more caregiving will be needed down the road, Walker looks at societal changes we’ve already seen. “This is a potentially challenging situation for several reasons,” she noted. “The economic impact of unemployment is resulting in financial hardship. And many people, women predominantly, have left the workforce this past year to manage the needs of home-educating children or caring for ill family members. As women are more often primary caregivers, the potential secondary wave of demand for this could further negatively impact their job status and financial stability.”
Ideally, she said, our social safety net will adjust for these changing needs: “Hopefully we will see private and public systems continue to support those in [caregiving] roles—by continuing flexibility for working at home, and by the expansion of social programming, financial subsidies for family-based caregivers, and medical leave.”
What can we do, at this time, to help loved ones whose anxiety about renewing their necessary screenings is so strong that they can’t face making the appointments?
“The best way to encourage is to partner, be patient, and plan small steps to larger goals,” said Walker. “Partnering starts with listening and validating their concerns, while focusing on what one can do in the present. Showing support can include creative approaches, and technology can sometimes help. For example, you could virtually attend a person’s in-person physician visit—with the permission of the patient and provider—so the patient feels supported and so you have the chance to ask clarifying questions and note instructions.”
If you’re local and can spare the time, consider attending the appointment in person —“or offer to accompany the person before and after the visit, bookending the experience with positive interactions,” Walker stated by way of example.
Breaking the process into steps can help too: “Create with the person a list of tasks, with the smallest and easiest first, building to the toughest—knowing that confidence can develop with each interaction. It’s important to be sure the person feels empowered in the process, especially when they feel a loss of control.”
Preparing for all possibilities
What if, in catching up with screenings, a loved one does receive a later-stage diagnosis? Where should we start, in mobilizing to face the illness?
“I think it is important that we validate the varied layers of vulnerability and loss people have experienced this past year—with the pandemic, with social unrest, and more—and acknowledge that a new diagnosis is likely to amplify these feelings, while not dwelling on regret around delays,” explained Walker. “A caregiver should access formal and informal support, for both themselves and the patient.”
“One positive of the pandemic,” Walker added, “has been the growth in virtual support services. Behavioral-health guidance is regularly being provided via tele-health, and there are legislative efforts to make this a permanent offering. This can be beneficial in managing logistics that, in the past, were limiting, like time and transportation.” Seek out a support group specific to the patient’s needs—such as for cancer recurrences or metastatic disease—and for caregiver needs, all of which can be offered virtually.
Don’t forget: Care for the helpers is important for the overall success of any caregiving arrangement. “Caregivers need to make sure they have healthy self-care practices in place,” said Walker, “as their needs are often minimized. And don’t try to ‘do it all’ yourself. Practice delegation.” Benjamin adds, “there are specialized organizations for caregivers. SHARE offers a group via Zoom—but we also refer people to organizations like Jack’s Caregiver Coalition,” which helps men in a caregiver role.
Christine Benjamin is the senior director of patient services and education at SHARE, a non-profit resource offering resources for women with breast, ovarian, or uterine cancer and their caregivers. “We are hoping that we will not see a greater number of people being diagnosed with later stages of cancer, but this is a possibility,” she previously told Survivor Net. “Because of delayed screening, this may also mean that people have to endure more aggressive treatment to achieve a good outcome.”
“Those for whom finances have played a part in delayed screening can contact SHARE to get connected with free screening services,” noted Benjamin.
Though SHARE focuses on resources related to three specific cancers, Benjamin notes that people in need of assistance with other types of screening can contact organizations such as the American Cancer Society and CancerCare for help. “And those who are diagnosed” with the cancers SHARE covers, she added, “can connect with us to get information and support, as can their caregivers.”
For people who do end up diagnosed with a more advanced cancer, Benjamin noted, “there is a lot of support available— helplines, online groups, virtual communities. There are also groups now that offer navigation services, which can help people access all the support, information, and medical care they need.” With support organizations like SHARE and similar groups, she explains, “people can speak one-on-one with trained peers or join a group to connect with other people living with advanced cancers.”
Benjamin is a strong believer in peer support: “There is no substitute for having access to others who have a similar diagnosis,” she said; and she recommends finding an organization that offers such connections. “Volunteers will go out of their way to let people know they are not alone,” she notes, “help them make sense of the diagnosis and treatment, and manage side effects, with the knowledge gained from living the experience themselves.”
Contributing: Pamela Rafalow Grossman, Shelby Black