Coming of Age with Cancer

A cancer diagnosis is devastating at any age, but those in their teens and early 20s have a distinct set of challenges.

“Young people are constantly going through a state of transition,” says Robin Voisine, MSW, MPH, LSW, an Adolescent and Young Adult Social Worker Navigator at Cleveland Clinic Cancer Institute. “They’re figuring out their identify, their relationships and their friendships. When you throw a cancer diagnosis into the mix, it can derail things. They might have to pause their college plans. And depending on the diagnosis, they may have to think about things like fertility, so all of a sudden they’re catapulted into making decisions 15 or 20 years before they otherwise would have.”

The emotional toll of cancer in patients at this young age is multifaceted. “These big steps like graduation or starting a job really define your experience at that age, and when those get interrupted it can have a tremendous impact,” explains Erin Rafter, PhD, a psycho-oncologist with Cleveland Clinic Cancer Institute and a member of the Young People with Cancer Leadership Council. “It’s also an age where people are working to find their own independence and when a cancer diagnosis occurs, it challenges that dynamic. Patients are faced with balancing the need for their parents’ help with wanting to be self-sufficient.”

“Mental health symptoms are higher in this population because so much of their formative experiences are disrupted,” explains Natalie Jacobowski, MD, a child and adolescent and adult psychiatrist with Cleveland Clinic Cancer Institute. “It’s a time when people are building their lives, and it can be very hard after treatment to feel like they’re behind their peers or their body isn’t ready to get back to what they want to do.”

Supporting cancer care teams

The Integrated Program for Young People with Cancer connects patients between the ages of 15-49 with the care and services that will be most impactful to their experience, outcomes and quality of life. Part of the program's scope is to connect patients to practitioners who have expertise in caring for young people. These professionals augment the cancer care team, providing crucial emotional and mental health support to young patients and their families.

In addition to utilizing these resources, oncologists, hematologists and other providers can employ the following practices when caring for young patients.

Understand what’s behind patient “adherence” issues. It’s understandable for a healthcare provider to be frustrated if a patient doesn’t show up for a scan or misses an appointment, but with teens or young adults, there’s often emotional distress at play. Recognizing this can help providers bring added compassion in these situations.

“People who are 15-26 still have a developing frontal lobe, which manages our decision-making function and our ability to regulate emotions,” explains Dr. Jacobowski. “When they have cancer, we’re asking that they have a forced maturity to deal with a life-threatening disease at a time when they’re just learning how to proactively communicate their needs and emotions to other people.

When they’re anxious or distressed, this often comes out in behaviors like avoidance or decreased adherence. If you’re seeking a lot of these patterns of avoidance, come up with a patient, I would encourage you to have a lower threshold to consider engaging other team members to further explore why this is happening and support them.”

Introduce social work at the time of diagnosis. Bringing in social work early on gives patients a way to have more in-depth dialogue about what they’re going through. These professionals are well versed in addressing acute barriers to care, from financial and employment issues to fertility preservation. Social workers can support the patient directly and can bring in extra layers of emotional support from psychology or psychiatry as needed.

Recognize where patients are developmentally. For younger patients, it’s not always obvious to them how to take an active role in their own care. “We learn over time how to advocate for ourselves. This can be an education process for our younger patients,” explains Dr. Rafter. “Modeling that behavior and encouraging them to talk through what’s going on in their lives can help them to have a voice and to speak up for their needs.”

Acknowledge their pain. Cancer can make anyone feel like they have no control, but this is especially so for those in their teens or early 20s who already don’t feel a lot of control over their lives. “Slowing down and putting into words how tough the situation is can go a long way,” explains Voisine. “Take that extra time to really understand where the person is in their life and how this is going to affect them.”

Normalize talking about sensitive topics. Young patients may not recognize that they can raise concerns about personal symptoms like having difficulty going to the bathroom or concerns around having sex. “I like the introductory model of other patients have told me, such as ‘other patients have told me they struggle with changes in intimacy or concerns about fertility, is that something that has impacted you?’” says Dr. Jacobowski. “This lets the patient know these topics are safe to talk about.”

Give patients one-on-one time. Often, it’s appropriate for loved ones to be in the room during a visit, but allow opportunities for patients to also talk one on one. This can help facilitate honest conversations about more sensitive matters.

“A patient is a lot less likely to broach a subject like sexual health when their parents are in the room,” says Dr. Rafter. Dr. Jacobowski adds, “One of the models we use in pediatrics is an opt-in process by saying to the patient “we regularly give teenagers a chance to meet with us one on one. Is that ok with you? This is a trauma-informed approach so that if they’re really nervous, we don’t force them if they’re not comfortable.”

One-on-one conversations also allow the space for the patient to be free about their feelings. “Parents have the instinct to protect their kids from scary things. Kids have the same instinct to protect their parents,” says Dr. Rafter. “This instinct comes from a good place but it can really shut down conversations and acknowledgement of needs. If we address those worries, then everybody in the family can get the support they need and hopefully continue functioning to the best of their ability. Opening up that communication chain that it's okay to have emotions with each other is really important.”

Normalize patients’ differences. There’s often societal pressure to be a ‘warrior’ through cancer. This may lead patients to believe they need to “tough it out” with symptoms. “Though well-intentioned, sometimes the message of the warrior cancer patient can undermine other people's experiences,” says Dr. Rafter. “When talking with our young patients, we start out by acknowledging both that they’re doing a great job getting through hard treatment – and that cancer is awful, emotionally and physically. We emphasize that ‘your experience is your experience, and our goal is to find what works for you.”

Consider extra support for some of the logistics of their care. Managing cancer can feel like a full-time job to any patient, and this is especially difficult for adolescents and emerging adults who are still building the life skills to manage a job. Dr. Jacobowski highlights, “they’re still building their executive functions skills, so it’s a large ask for them to all of a sudden manage an array of tasks like handling referrals, scheduling multiple appointments and refilling prescription.

Creating a little structure and scaffolding around tasks that are developmentally hard can help. This might involve having a nurse coordinator provide a bit of extra follow up, prioritizing one or two referrals to call and schedule and then adding the next tasks, or talking with the patient about ways we can help with prioritizing and completing these follow-up tasks.”

Talk about more than cancer. “Especially at an age when they’re forming their identity, people do not want to be known as a cancer patient,” says Dr. Jacobowski. “If your patient tells you about an important milestone that’s coming up, you might make yourself a sticky note to ask them about it during the next visit. Building that personal connection creates an opportunity to share. Those seemingly little things go a long way in a patient’s experience.”