INDIANAPOLIS — In patients with low-risk cancers undergoing active surveillance, the medical field needs to help manage the anxiety caused by waiting, according to a recent study.
The viewpoint article published in JAMA Oncology presents the case for interventions designed to reduce the anxiety related to cancer monitoring. Study authors are affiliated with the VAMC in Indianapolis.1
“Many cancer patients, including those with low-risk diagnoses, experience significant anxiety,” David Haggstrom, MD, MAS, a physician-researcher with the Indianapolis VAMC, Regenstrief Institute and the Indiana University School of Medicine in Indianapolis, told U.S. Medicine. “In fact, over half of cancer patients report feeling distressed or worried, even when their prognosis is positive. With advancements in technology, we’re diagnosing more low-risk cancers, which some experts refer to as ‘overdiagnosis.’ However, once someone is told they have cancer, the emotional impact is real, regardless of the risk level. Doctors should recognize this and be ready to address the mental and emotional toll.”
The National Cancer Institute defines low-risk cancers as those that tend to grow slowly and for which delayed, or no, treatment doesn’t negatively impact outcomes. In clinical practice, efforts have been made to change the language describing cancers. For instance, low-risk neoplasms are referred to as tumors or nodules rather than cancers or carcinomas. Also, the conservative management of low-risk cancers is referred to as active surveillance, as opposed to watchful waiting, which implies a passive approach. However, the authors make the case that more needs to be done to lessen patient anxiety related to cancer monitoring.
Haggstrom recommended several ways to help patients manage the anxiety that comes with active surveillance of low-risk cancers.
“These include therapies that focus on emotional support, like cognitive behavioral therapy and acceptance and commitment therapy,” he said. “Additionally, we should create tools that help provide clear information, such as patient-decision aids or decision support tools for doctors. While these approaches carry minimal risk, we need more research to confirm how effective they are and how best to use them.”
No Active Treatment
Several malignant cancers are deemed appropriate for clinical observation and don’t require active medical or invasive surgical treatment unless changes in surveillance tests require further evaluation, biopsy or treatment. These cancers include localized prostate cancer, papillary thyroid cancer, lobular breast cancer in situ and indolent hematologic malignant neoplasms, the researchers pointed out.
“Prostate cancer is the most common cancer in men, and thyroid cancer is the leading cancer among people younger than 40,” Haggstrom noted. “These cancers have excellent survival rates—98% or higher at 5 years—but it’s crucial for healthcare providers to acknowledge the emotional impact a cancer diagnosis can have, even for low-risk cases. Addressing these feelings should be part of our care.”
“As a primary care physician at VA, I believe we need to be mindful of the concerns that even low-risk cancers can cause,” he advised. “It’s important for doctors to monitor cancer progression through regular tests, but just as important is offering support to help patients manage their anxiety and uncertainty about the future.”
The authors suggested that patients undergoing active surveillance for low-risk cancers can experience high levels of emotional distress and anxiety as they wait to see whether they will be among patients who enjoy a favorable outcome or among those who won’t. For patients, the waiting can be short term, such as the return of test results, or long term, which involves surveillance approaches. Long-term active surveillance for many slowly progressing cancers can include periodic laboratory tests or imaging with waiting periods in between, resulting in “scanxiety.”
When deciding to wait and observe, the investigators explained that it’s important for healthcare providers to share with patients the trade-offs between clinical benefit and harm. Waiting can be beneficial by avoiding the risks of unnecessary interventions, and the harms could involve a greater likelihood of cancer recurrence.
Still, uncertainty about diagnosis, prognosis or treatment can’t be eliminated, and the many negative effects of uncertainty, including feelings of vulnerability or fear and avoiding decision-making, need to be addressed. Psychological interventions that have been used for patients with anxiety disorders and among patients with more-advanced cancer could be modified for patients undergoing active surveillance. These approaches could help patients tolerate waiting for clinical findings, the researchers reported.
In patients with metastatic breast cancer, acceptance and commitment therapy has been tested to improve symptom interference with function. Also, cognitive behavioral therapy and supportive-expressive therapy have been tested in randomized clinical trials to improve psychological outcomes. Mindfulness meditation programs are among additional solutions to manage uncertainty and anxiety that have been associated with small to moderate reductions in several negative dimensions of psychological stress, according to the study.
In addition, decision aids could be valuable in helping patients manage the uncertainty created by pseudodisease or diagnoses that will never cause the patient any clinical issues. Clinical decision support tools could also educate physicians who don’t have a complete understanding of their patients’ prognoses or surveillance options, the investigators explained.
Haggstrom suggested that “healthcare should focus on the patient, but we also need to remember that it happens in intervals.”
“Between visits, patients live with the knowledge of their diagnosis and the uncertainty it brings,” he pointed out, “For those on active surveillance, the waiting can be the most difficult part, and it’s essential we don’t overlook this aspect of their experience.”
The study noted that primary care, the foundation of longitudinal health care, can be combined with mental health services to manage uncertainty over time. When appropriate, oncologists could consider low-cost practitioners to support less intensive, more holistic care.
- Haggstrom DA, Braafladt SM, Han PKJ. Active Surveillance for Low-Risk Cancer-The Waiting Is the Hardest Part. JAMA Oncol. 2024 Aug 15. doi: 10.1001/jamaoncol.2024.2667. Epub ahead of print. PMID: 39145971.
