My aunt recently died of stage 4 breast cancer. She was diagnosed in April at the age of 78 and passed just three weeks later. She had been living in a long-term care facility since 2020. At the time, she was admitted with a sore on the bottom of her foot and arthritis so bad that she could hardly walk. Her cancer was discovered incidentally six years later while at the hospital for a urinary tract infection.
She told my mom after the diagnosis that she had a lump but never sought medical attention. She had not been screened for breast cancer since entering the facility, and after she learned of her diagnosis, she blamed herself for not being screened and promptly gave up on living, according to my mom.
Something seemed off. How could it be that she was living in a facility that was charged with her care, yet there appeared to be no discussion about breast cancer screening and whether it was appropriate for her? And once she noticed a lump, how did it go unevaluated? Her tragic stage 4 diagnosis and rapid death seemed largely preventable to me and left me wondering whether screening guidelines should specifically address residents of long-term care facilities. Furthermore, I wondered whether health care providers need training around cancer screening specific to this population.
As a cancer epidemiologist, I deal in statistics — screening, incidence, and survival statistics. A diagnosis of stage 4 breast cancer is not very common. The National Cancer Institute’s Surveillance, Epidemiology, and End Results data, which collect cancer diagnosis and survival data from population-based cancer registries across the United States, indicate that only 6.4% of female patients 40 years and older were diagnosed at this late stage in 2022 and 2023. This percentage varies by age, with 8.1% of patients 75 and older being diagnosed at stage 4 versus 6.0% of those from 40 to 74 years old.
Guidelines for stopping breast cancer screening as we age vary by organization. The American Cancer Society recommends that “Screening should continue as long as a woman is in good health and is expected to live 10 years or longer.” The U.S. Preventive Services Task Force concludes “the current evidence is insufficient to assess the balance of benefits and harms of screening mammography in women 75 years or older.” The American College of Obstetricians and Gynecologists says that for women beyond 75, screening “should be based on a shared decision-making process” between the health care provider and the patient “that includes a discussion of the woman’s health status and longevity.”
Screening guideline change led to more colorectal cancers being detected early in younger adults
There are no major national cancer screening guidelines specifically written for older individuals living in long-term care facilities, a vulnerable group of patients at increased risk of cancer because of their advanced age. Older women have seldom been included in randomized trials that evaluate the benefits of mammography screening on morbidity and mortality. In reading literature on this topic, I came away feeling that substantial attention was devoted to the harms of screening residents of long-term care facilities, with much less attention to identifying those residents for whom screening may still provide meaningful benefit.
Although my aunt was non-ambulatory because of arthritis, she was not without vitality until just before she was hospitalized. She did not have obvious comorbidities that, to me, would indicate a less than 10-year life expectancy despite her non-ambulatory status. She could operate an electric wheelchair, which she had ordered for herself a few years back. She spent a lot of her time talking to friends on the phone and buying anti-aging products and jewelry from QVC. Last December, in what would prove to be my final conversation with her, she excitedly told me about the impact she was going to make as the newly elected “president” at the facility. I am not sure exactly what her responsibilities as president included, but she had big plans to help the staff better attend to the residents in her new role.
The situation with her breast cancer diagnosis seemed tragic. The palpable cancerous lump had been there for some time, and the pathology report indicated that it was estrogen receptor (ER)-positive. ER-positive cancers are slow-growing and can often be controlled with hormone therapy, even after they have spread. If caught earlier, before it had spread to her liver and bones, my aunt may have lived many more years with treatment.
Because of my research training, I know the importance of using evidence to develop clinical guidelines. Guidelines should be developed considering the risks and benefits of cancer screening for the individual. There are certainly risks to consider with screening at any age, but especially for those who are vulnerable, like my aunt living in a nursing facility. Harms include exposure to mammography radiation, physical pain, psychological stress, false positives leading to additional tests and anxiety, and overdiagnosis that can lead to unnecessary treatment and associated side effects.
However, there are also benefits to screening for at least some older adults that should be considered. One paper concluded, “Although the majority of this very old population may not benefit from preventative screening mammography, the population is heterogeneous, and unique cases warrant clinical judgement to identify individuals who may benefit.” Yet there is little guidance on how to identify which long-term care residents may still benefit from cancer screening.
In one study, researchers estimated the median life expectancy after being admitted to a long-term care facility at 2.2 years. However, it can be substantially longer for residents like my aunt whose need for long-term care stemmed from severe arthritis rather than a terminal illness. In the era of precision medicine, screening guidelines specific to this institutionalized population are needed. Some people living in long-term care facilities may have several years of quality life left, a life that they, their families, and their friends still value. It should be an intentional, shared decision-making process between the resident, caregiver, and their health care provider that considers the benefits and harms for that individual.
Improved guidelines alone will not solve the problem. Training for health care providers and long-term care teams is needed on how to have conversations about cancer screening with residents and families. Screening decisions should consider factors beyond age and disability status alone. A meaningful shared decision-making process between the health care provider and resident should consider what matters to the resident, with caregivers involved as appropriate. Would she want to undergo additional testing if something were found? Would she consider treatment? Does her overall health suggest that screening may still benefit her? Are practical barriers, such as transportation or arranging for care outside the facility, influencing the decision not to consider screening more than her own values or medical condition?
For long-term care residents, cancer screening decisions should be intentional, individualized to the patient, documented, and revisited regularly or when health status changes. No one should reach the end of their life blaming themselves for cancer being detected too late.
Kim Johnson, M.P.H., Ph.D., is a cancer epidemiologist and professor at Washington University in St. Louis in the Brown School of Social Work.
