Managing Primary Care of Patients After Cancer Treatment

The good news about cancer is that there are increasing numbers of people who are surviving after treatment, in some cases due to newer medicines and, in others, due to screening detecting the disease earlier.

As of January 1, about 18.6 million people in the US had a history of oncologic treatment, a figure expected to exceed 22 million by 2035, researchers at the American Cancer Society estimated in a new report. While the estimate excludes most in situ carcinoma and basal cell or squamous cell skin cancers, it still shows how primary care clinicians will likely face increasing demands to help patients manage the aftermath of their cancer treatment.

Some cancers appear to be showing up more in younger people, perhaps in part due to sedentary lifestyles and poor diet. Research found excess body weight may play a role in global increases seen in early-onset breast, pancreatic, colorectal, and kidney cancers.

And treatments for cancer have been undergoing radical changes. Older chemotherapies that stop fast-growing cells, such as cancerous ones, remain widely used, but many new kinds of drugs have been introduced, sometimes only with emerging data available on their safety and benefits.

These include immune checkpoint inhibitors, chimeric antigen receptor T-cell therapies, and new forms of monoclonal antibodies.

“It’s an exploding field” of treatments, said Kimberly S. Peairs, MD, the vice chair for clinical affairs at Johns Hopkins School of Medicine, Baltimore.

Yet there has not been much focus in US medicine in general on what happens when patients cycle back to being seen primarily by their primary care clinicians after treatment.

Peairs in 2015 founded the Primary Care for Cancer Survivors Program, which has served as a model for physicians elsewhere seeking to help bridge gaps that might otherwise happen in patient care.

For example, Ilana Yurkiewicz, MD, of Stanford University School of Medicine sought advice from Peairs when she sought to create a more unified approach to caring for patients who have had cancer treatments.

Yurkiewicz has worked closely with Natasha Steele, MD, a Stanford colleague who is a former lymphoma patient. In an interview with Medscape Medical News, Steele noted how patients can face a jarring change at the end of treatment. They transition from relying heavily on oncologists’ expertise during their life-threatening illness to needing to resume participation in managing aspects of their own care.

“During cancer treatment, patients have to put their lives in the hands of their oncologists and trust they are safe,” Steele said. “But survivorship is a paradigm shift where we’re really trying to empower patients with information and skills to manage some of their health risks longitudinally, and this can be challenging for a lot of reasons.”

For primary care clinicians, the changes in treatment and outcomes are allowing them to participate in one of the most rapidly advancing fields of medicine. For example, the National Comprehensive Cancer Network (NCCN) updated its guidelines 241 times last year. Clinicians in primary care can also rely on many tools like UptoDate and continuing medical education courses to aid with this challenge.

Physicians can help patients adjust to their “new normal” life after cancer treatment, Peairs said.

“We’re not asking primary care people to be oncologists,” she said.

Below are three tips for primary care clinicians based on interviews with physicians who have significant expertise in oncology and in the emerging field known as survivorship.

1. Try reaching your patients about steps to prevent recurrence or future cancers.

Primary care clinicians can help get important messages through to patients who may struggle to keep track of follow-up care, said Kathleen N. Mueller, MD, the system director for integrative medicine and cancer survivorship for Nuvance Health, a seven-hospital health system in Connecticut and southeastern New York. Muller also serves on the board of directors of the American Academy of Family Physicians.

“When you’re undergoing treatment for cancer, it’s really difficult to process information,” Mueller said. “It is an overwhelming diagnosis.”

In many cases, people did not suspect they had cancer before their diagnosis.

“Now, all of a sudden, they’re thinking about their mortality,” she said. “They may not get all the information that’s communicated to them. So they might miss the fact that they’re supposed to get, for example, a mammogram every 6 months with an MRI.”

A key to success with these talks about preventing recurrence is finding a way to make sure patients hear the message, such as by discussing different steps at different visits, said Crystal S. Denlinger, MD, the chief executive officer of NCCN.

“It’s less about having an exact knowledge and more about knowing where to go to get the knowledge you need,” Denlinger said. “You don’t need to tackle it all at every visit. During one visit, you could ask somebody about how physically active they are and then talk about the fact that physical activity can lower the rate of development of cancer, and for certain cancers, could actually lower the rate of recurrence.”

Another visit could be an opportunity to discuss nutrition.

“Maybe you ask them about their diet and how much processed food they’re eating, how many fruits and vegetables they’re eating,” Denlinger said. “You don’t have to tackle the whole mountain. Start with a few steps.”

Denlinger also said it’s important to acknowledge the good habits patients already have, such as getting enough physical activity.

2. Provide patients opportunities to discuss how they are feeling.

Steele said she works to provide a “safe space” where patients can talk about what they are going through.

“After cancer treatment, a lot of people don’t feel like the person they were before cancer,” Steele said, adding that this can be distressing for them.

“The way I approach this with my patients is I try to normalize the challenges and the trauma of cancer and give them the skills to figure out how to use parts of the experience in a meaningful way,” she said.

Primary care clinicians have a chief role in helping patients with concerns about recurrence and the challenges of managing life after cancer treatment, Denlinger said.

Anxiety is likely to crop up “in those quiet moments” after the most challenging phases of cancer treatment are done, Denlinger said.

After diagnosis, patients often shift into a “I’ve got to fight the cancer” mindset, needed to help them focus and get through treatments. The demands of cancer care, along with the attendant disruptions to home and family life, can provide some degree of distraction.

After treatment, patients disconnect with their constant oncology engagement, she said.

“Now they’re returning back to the life that they had before they had cancer,” Denlinger said. “This may be a time where primary care providers are an important resource to address some of this post-treatment anxiety, as they’re sort of processing all the things that they’ve been through. Fear of recurrence is real, and it needs to continue to be assessed.”

Peairs and her colleagues at Johns Hopkins published a 2020 paper about the first 4 years of the Johns Hopkins Primary Care for Cancer Survivors Program. This paper included results from a survey of patients that found many sought help with emotional needs. These included fear of recurrence, reported by 64.2%; the challenge of living with uncertainty, 62.5%; and managing difficult emotions: anger, anxiety, and depression (53.1%).

People may also have concerns about what their diagnosis means for their family members, Mueller said. For example, a woman diagnosed with breast cancer may be worried about her daughter’s risk. Family physicians often build relationships with their patients over many years, and in many cases, know something about their relatives, giving them insights that oncologists couldn’t be expected to have, Mueller said.

“It’s the longitudinal, consistent relationship that we have,” she said.

3. Be aware that a patient’s risk can change over time.

It’s important to check for changes in both your patients’ family history and the guidelines for screening, Denlinger said. For example, a history done several years ago may not reflect recent diagnoses of cancer in a patient’s family. There also are newer genetic tests, such as those for pancreatic cancer risks, that may be suitable for patients, she said.

Kerry Dooley Young is a freelance journalist based in Washington, DC. She has covered medical research and healthcare policy for more than 20 years.