Getting Back on Track
- Many in the U.S. have fallen behind on cancer screenings during the pandemic. SurvivorNet reporting shows that advanced-stage cancer diagnoses have increased because of delays in screening.
- Experts point out that anxiety about re-emergence from the pandemic is natural. Remember that doctors, too, have been affected by it in all ways and will be unlikely to judge their patients for having fallen behind with appointments.
- Patients and caregivers have many resources available to assist in management of a cancer diagnosis, including helplines and virtual communities.
A recent national study found that screenings for colorectal, breast and prostate cancer dropped off during the early pandemic months. They increased later in the year, but the overall numbers never caught up to those of the year before. The drop-off “translated to an estimated absolute deficit across the entire U.S. population in screening for 3.9 million women (breast), 3.8 million men and women (colorectal), and 1.6 million men (prostate), for a total deficit of 9.4 million in 2020 compared with 2019,” the report found. SurvivorNet canvassed major cancer centers across the United States, and our reporting shows that advanced-stage cancer diagnoses have increased because of delays in screening due to the COVID-19 pandemic.Read More
Meanwhile, a doctor I’m supposed to see regularly stopped taking my insurance a few months before the pandemic. Not wanting to fall too far behind with those appointments, I found a new practitioner and scheduled an appointment this past February, hoping for the best in terms of COVID protocol. The practitioner was fine—but the multi-practice facility was chaotic and crowded. Patients wandered in all directions in the common spaces; some had their masks around their necks. This kind of thing was exactly what I’d worried about. I vowed not to return to that facility until fully vaccinated; but a friend I told about the experience said I should not return at all.
That’s probably the right advice, but it means I have to take the time to find someone else with decent recommendations who takes my insurance—a process I’d hoped not to repeat so soon.
Expert advice for next steps
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 says. “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,” says 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 notes. “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 says. “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 says, 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,” Walker says. “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 (again, if granted permission)—“or offer to accompany the person before and after the visit, bookending the experience with positive interactions,” Walker says.
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,” Walker says. “A caregiver should access formal and informal support, for both themselves and the patient.”
“One positive of the pandemic,” Walker continues, “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.
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 says. “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,” Benjamin says.
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 adds, “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 notes, “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 says; 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.”
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,” Walker says, “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.