A family and their two dogs smiling on a couch.
Cancer survivor Iris Bugbee with her husband, Greg, daughter Mila, and corgis, Candi and Charli, at her home in Fuquay Varina in 2024. Bugbee participated in a clinical trial aimed at helping young adults battling cancer learn strategies to ease their post-treatment symptom burden through things like mindfulness and physical activity. Photo by Eamon Queeney/Duke University School of Medicine.

Helping Young Adults Move Forward after Cancer

Published

Being diagnosed with cancer and going through treatment isn’t easy for anyone. For people diagnosed as young adults (ages 18-39), the experience comes with some unique challenges.

“This is an age of transition,” said Caroline Dorfman, PhD, a clinical psychologist at the Duke Cancer Institute. People in this age group are often in the midst of reaching milestones such as graduation, landing a job, building a friend group, getting married, and having children, she said. “One of the things we hear from our patients,” she said, “is that the cancer diagnosis stops them in their tracks from being able to move forward on life milestones.” 

Even after treatment ends, life doesn’t suddenly switch back to normal. Physical symptoms like pain and fatigue can linger, and emotional distress is common during the post-treatment period. Multiple follow-up appointments can present financial and logistical difficulties as well as emotional reminders of cancer. 

“Sometimes they just want the cancer behind them and to get back to doing what matters to them,” Dorfman said. “The trouble is that when they are in the midst of treatment, they are just trying to get through it, and they don’t stop to process the experience.” 

That emotional processing often happens after the last chemo treatment or radiation session. 

To support young adults during this vulnerable period, Dorfman has designed a 10-week program that aims to give them the tools they need to navigate physical and emotional symptoms and learn how to successfully manage their new lives as cancer survivors.

A family and their two dogs smiling on a couch.
Cancer survivor Iris Bugbee with her husband, Greg, daughter Mila, and corgis, Candi and Charli, at her home in Fuquay Varina in 2024. Bugbee participated in a clinical trial aimed at helping young adults battling cancer learn strategies to ease their post-treatment symptom burden through things like mindfulness and physical activity. Photo by Eamon Queeney/Duke University School of Medicine.

Filling a Gap

In college, Dorfman decided she wanted to work at the intersection of psychology and oncology, partly because of her family history: her mother was diagnosed with breast cancer when Dorfman was in middle school. “It was interesting to me how different family members responded,” she said, “and to see how I navigated that, versus how my sister, my mom, and my aunts and uncles navigated it.” 

In graduate school, she began to focus on ways to support the emotional wellbeing of cancer patients. “Once we understand the problem,” she said, “what can we do to help improve the experience of our patients through behavioral interventions?” 

When she arrived at Duke as an intern in clinical psychology several years ago, she saw an unmet need among her patients: it became apparent that they could benefit from a structured system of post-treatment support tailored to their stage of life. 

So she decided to design and test a program to do that. 

Dorfman’s post-treatment curriculum, delivered over the course of 10 weeks, teaches skills and strategies that have been shown to reduce emotional distress, pain, fatigue, or all three, including relaxation and meditation, strategies to improve self-talk, home-based exercise, and values-based decision-making and goal-setting. The program also includes strategies for improved communication with family, friends, and medical professionals. 

“We can educate patients on how normal it is to have continued symptom burden and how normal it is to feel like they are not achieving goals in the way they would like,” she said. “And we can provide them with tools to help them move forward on the important goals they have for their lives while navigating symptoms like pain or fatigue.” 

The content is delivered via eight 90-minute virtual group sessions, supplemented by written material and a mobile app. 

Dorfman successfully secured a National Institutes of Health (NIH) grant for early-stage investigators in 2019 to pilot the program. Her mentors during the design and application phase were Kevin Oeffinger, MD, professor in the Department of Medicine, and Rebecca Shelby, PhD, associate professor in the Department of Psychiatry and Behavioral Sciences. 

Oeffinger, who has worked with young adult cancer survivors for 35 years, said that post-treatment symptoms in this group have been overlooked in the past. “Caroline is trying to fill that gap, both in her clinical program and her research program. What she is doing is incredibly important.”

Caroline Dorman, PhD / Clinical psychologist

Listening to Young Adult Cancer Survivors

Before designing the program, Dorfman interviewed young adult cancer survivors and cancer physicians to identify the most bothersome post-treatment symptoms, which were pain, fatigue, and emotional distress. 

During those interviews, she also solicited ideas from the young adults about what kind of support they would like. 

In addition to strategies for addressing their symptoms, young adults wanted information about how to communicate their needs to different groups, from people in their social networks to physicians. Unlike older adults, young people often haven’t seen peers go through cancer treatment and haven’t had a lot of experience asking for support or advocating for themselves in healthcare situations, or, in some cases, even going to the doctor by themselves. 

“Some of these young adults have not had a need for regular primary care prior to their cancer diagnosis,” Oeffinger said. “Now, having gone through cancer, all of sudden they have new short-term and long-term risks. They really need to get engaged with the health care system.”

In their day-to-day interactions with bosses, colleagues, and teachers, young adults wanted tips for how to ask for certain accommodations. 

Based on this input, Dorfman made sure her program included strategies for assertive communication – with family, peers, teachers, colleagues, and health care providers. 

“Sometimes people in their social network said things that were really unhelpful,” Dorfman said. “So we provided strategies for understanding who is in their social network and how to make requests to that network so they could get what they needed.” 

Based on this input, Dorfman made sure her program included strategies for assertive communication – with family, peers, teachers, colleagues, and health care providers. 

“Sometimes people in their social network said things that were really unhelpful,” Dorfman said. “So we provided strategies for understanding who is in their social network and how to make requests to that network so they could get what they needed.”

Kevin Oeffinger / Professor, Department of Medicine

Building on What Works

The pilot included 61 participants, and the results were encouraging. “We found really high satisfaction,” Dorfman said. “Folks enjoyed it and would recommend it to other people who also had cancer who were similarly aged.” 

Not only did participants like the program, but their symptoms became less burdensome. 

An important feature of Dorfman’s program is the delivery as a package of sessions, each of which builds on the one before. At the Duke Cancer Institute, young adult cancer survivors, like all cancer survivors, already have a wealth of supports in place, from support groups to individual counseling. But these resources are offered a la carte and on-demand; it’s up to each patient to pick and choose.

Dorfman’s program stands out because of its structure as a curriculum that covers a range of skills and topics over 10 weeks. “What’s unique is the packaging,” Dorfman said. “These strategies in this combination have not been evaluated before.” 

Now that the pilot has demonstrated promise and proved itself to be feasible, Dorfman has applied for and received a larger, five-year NIH grant to test the efficacy of the program with about 250 participants. Based on the pilot, Dorfman plans to tweak a few details — using individual instead of group sessions to increase flexibility in scheduling, reducing the number of sessions to six, and adding even more strategies to help participants gain confidence in being active participants in their ongoing medical care. 

If the program proves to be effective in this larger group of people, Dorfman hopes it will be used regularly as part of the Duke Cancer Patient Support Program — and beyond. 

The package, with its written materials and structured curriculum, could easily be shared with other institutions. 

Oeffinger expects that’s exactly what will happen. “This study has incredible potential,” he said, “both within the Duke community and wherever young adults are treated for cancer.” 

Meet a patient who partcipated in this trial.

For more information about the trial of the support program, patients can contact study coordinator Michael Willis, Michael.w.willis@duke.edu, or 919-681-8437.