Caring for your psychological needs as an adolescent or young adult cancer survivor

By Jessica Saenz

The burden of cancer is different for everyone, and life stages can play a role in how it affects people. For adolescents and young adults (AYAs) ages 15 to 39, cancer is a disruptor during a time when people are experiencing personal growth, taking on new responsibilities and becoming independent. This can take a toll on mental health, and the emotional and psychological distress of surviving cancer during these formative years can have long-term effects.

Kristine Donovan, Ph.D., a clinical psychologist and co-director of the Adolescent and Young Adult Cancer Program at Mayo Clinic, explains how cancer affects AYAs and how to cope.

Prioritize your basic needs.

When you experience a life-changing event like a cancer diagnosis, fundamental needs like sleep, nutrition and exercise can suffer. Cancer and cancer treatment side effects such as pain, nausea, poor appetite and fatigue can make meeting these needs challenging, ultimately affecting treatment response, mental well-being and quality of life.

If you are experiencing symptoms that make caring for yourself difficult, talk to your care team and ask about cancer-specific mental health support. "Patients have better outcomes when they work with a counselor or psychiatrist who routinely works with cancer patients," says Dr. Donovan. Counselors and mental health providers can help you decide the most effective treatment for your symptoms.

"Patients have better outcomes when they work with a counselor or psychiatrist who routinely works with cancer patients."

Kristine Donovan, Ph.D.

Dr. Donovan says talk therapy, such as cognitive behavioral therapy, and medication can be effective symptom-management tools. "If a patient is having challenges with appetite because of chemotherapy, a psychiatrist who works in onco-psychology or the cancer space might know how to tackle more than one symptom with one medication."

Communicate with caregivers, friends and family.

Understanding your needs and boundaries is an important part of preserving your mental health as a cancer patient and survivor, and Dr. Donovan says this exploration makes up much of her work with AYAs. "Helping patients communicate their needs can be helpful, especially for young adults who've had some growing independence from parents and family of origin, then they're hit with this diagnosis, and parents immediately want to protect and take care of them," she says.

Some people welcome support from family and friends but decide to keep parts of their cancer care and survivorship journey private. For example, you may not want your parents to have access to your health portal, but you would like them to accompany you to certain appointments. Voicing your level of comfort and preferences can help avoid frustration for you and those who support you.

Learn about the resources available to AYAs.

Individual counseling, cancer support groups, social workers, and financial and career assistance might be available through your cancer care team. AYA-specific resources can also help you navigate the challenges you face.

"If you're 45 or 55, you tend to have more reserves — whether it's financial resources, emotional resources, or a wider network of friends or family who can help you. Younger adults are less likely to have those resources to help support them through the process," says Dr. Donovan. AYA resources are often curated with this in mind.

"If you're 45 or 55, you tend to have more reserves — whether it's financial resources, emotional resources, or a wider network of friends or family who can help you. Younger adults are less likely to have those resources to help support them through the process."

Kristine Donovan, Ph.D.

Online resources are available through organizations specializing in AYA cancer survivorship, including:

• Checklist: Finding Help as a Parent with Cancer
• National LGBT Cancer Network Resource Library
• Returning to Work After Cancer Treatment
• Stupid Cancer Resource Guide
• Triage Cancer Military, Veterans & Cancer Resources
• Triage Cancer Toolkit for Navigating Finances After Cancer

Focus on what you can control.

During your cancer journey, you will encounter circumstances out of your control, which can lead to feeling powerless. Dr. Donovan says this is a common feeling among AYAs she works with, and it can have a negative impact on mental health and make navigating cancer care, relationships and daily life more difficult.

"As psychologists, sometimes we see patients right after diagnosis before their treatment plans are even in place," says Dr. Donovan. This is often when uncertainty and worry are at an all-time high.

Though you may not have control over your diagnosis or if your cancer will come back, Dr. Donovan says AYAs can cope and regain a sense of power by focusing on things they can control. "I tell them, 'Let's figure out what you can do between now and two weeks from now when you get your treatment plan,'" she says.

If you were just diagnosed with cancer and don't know what to do next, consider:

• Making a list of questions for your care team. Ask about resources they can offer you.
• Finding an ally, such as a friend or family member you can rely on for emotional support, company at appointments, advocacy or day-to-day help.
• Connecting with peers by joining a cancer support group with members who can offer guidance.
• Adopting habits to improve your sleep, and asking your healthcare professional for support if you continue to have trouble sleeping.
• Eating a well-balanced diet to nourish your body before treatment.
• Talking to a school counselor or your employer's human resources team to learn about medical leave policies and schedule flexibility.

Dr. Donovan says it's also important to do things you enjoy in periods before or between treatments. "If you have two weeks before surgery, for example, how do you want to spend that time? Maybe you can finish that work project if that's important to you — or maybe you just want to relax and spend those weeks with friends and family."

Understand that it's OK to grieve.

You may feel grief for many reasons, and they are all valid. Missed college experiences and career goals, prolonged family planning, and financial hurdles are just a few of the many possible effects of cancer.

"It's a life interrupted," says Dr. Donovan. "It's a big shift to go from being a full-time student, young parent or employee to a full-time cancer patient."

"It's a big shift to go from being a full-time student, young parent or employee to a full-time cancer patient."

Kristine Donovan, Ph.D.

Dr. Donovan shares how she observed this shift in her own family. "My brother died of cancer at 35. When he was really sick, he would go to my parents’ house and our mother would put him in a recliner while she took care of his two-year-old daughter. So things shifted. He went from being a successful broadcaster to just being able to hang out with his mom and youngest child," she says.

Dr. Donovan adds that acknowledging the grief and discomfort of cancer can sometimes allow you to begin to find meaningful connections again despite your diagnosis. "Your priorities shift; I've seen this in patients. Their world shrinks, but they're able to find meaning and purpose. In my brother's case, he continued to parent to the best of his ability," she says.

This loss of independence, in any capacity, can feel devastating. "The thing I've found to be most meaningful for patients is just acknowledging how sad it is and how hard it is," says Dr. Donovan. "There's nothing you can say to make that better, but we can give them permission and space to express and process these feelings."

Learn more

Learn more about adolescents and young adults with cancer.

Join the Adolescent and Young Adult (AYA) Cancer Support Group on Mayo Clinic Connect, an online community moderated by Mayo Clinic for patients and caregivers.

Join Mayo Clinic's online Young Adult Cancer Support Group based in Arizona.

Also, read these articles:

• Cancer and mental health: Coping with the burden of your diagnosis
• Finding balance: Tips for managing caregiving and self-care
• 7 steps to better nutrition habits for cancer survivors
• Sally Blackwell 'no longer on the sidelines' after life-changing surgery for rectal cancer

Read more stories from adolescent and young adult cancer patients and cancer experts at Mayo Clinic.