Social Worker Melody Griffith joined Mayo Clinic in 2016 to support the Lymphoma Care team in Arizona. She found herself working with many young adults with cancer. “I quickly realized that it is much different to have a cancer diagnosis as a young person than as an older person,” she says.
While the median age for a cancer diagnosis is 66, about 89,000 adolescents and young adults between the ages of 15 and 39 are diagnosed with cancer each year in the U.S., according to the National Cancer Institute.
The most frequently diagnosed cancers among this age group are primary bone cancer, Hodgkin’s lymphoma and testicular cancer, but incidence varies by age. Lymphoma and thyroid are most common among 15- to 24-year-olds, and breast and thyroid are most common among 25- to 39-year-olds.
Young adults with cancer and their unique needs
Hailey Crider was diagnosed with melanoma at 24 and again at 29. Now 32, and after a difficult journey with metastatic melanoma that brought her to Mayo Clinic for treatment, she has been cancer-free for more than two years.
“There’s this natural expectation that the older generation can get sick. It’s a lot tougher as a young adult to navigate through that because your peers don’t understand it,” says Crider. “I remember when I was first diagnosed. My dad was with me, and he said: ‘Kiddo, these are conversations we shouldn’t be having for a very, very long time. And when we do, they should be about me.'”
Adolescents and young adults with cancer don’t fit well in pediatric or adult cancer care. Their biology is distinct from that of other age groups, as are the outcomes of their cancer treatment, and their psychological and social needs. They may be students in high school or college. They may be living on their own for the first time and transitioning out of health insurance coverage through their parents. They may be thinking about starting families at a time when cancer and cancer treatment can affect fertility.
“Diagnosis is tough,” says Crider. “At that point, there are a lot of decisions you have to make, especially for women. Sometimes fertility is on the line, and there are conversations that you don’t really want to have, or you’re not prepared to have as an adult.”
Birth of a support group
Griffith knew her young adult patients needed more support to cope with these challenges. She recruited eight young adult patients as an impromptu advisory council, and together they decided to start a support group with two goals: build a community so no adolescent or young adult with cancer has to go through the experience alone, and raise awareness that cancer happens to young people, too. And that’s how the Young Adult Cancer Support Group based at Mayo Clinic in Arizona was born.
“What I hear a lot is, ‘My friends are trying to be supportive, and they’re great, but they just don’t get it.’ The support group is a safe place where they can say things that might be scary to their friends or family,” says Griffith.
The Young Adult Cancer Support Group meets once a month on the first Thursday of the month from 6 to 8 p.m. MST via Zoom. Everything said during group is confidential and no recording of the meeting is allowed. Group meetings are open to all young adults with cancer — not just Mayo Clinic patients.
“Sometimes we have as many as 25 people come. And sometimes we only have one person come. But if it makes a difference for one person, that’s a success to me,” Griffith says.
Griffith sometimes starts group meetings with a topic for discussion, such as fear of recurrence, or she might ask group members if there is a topic they’d like to discuss. She keeps meetings informal and lets the group guide the conversation.
“When I tell people about the group, I say ‘You don’t know necessarily what you need from group, and you don’t know necessarily what you’re going to give at group.’ And both of those are beneficial,” says Griffith.
Griffith shares information with the support group about the latest research on adolescent and young adult cancer and makes sure group members know about opportunities to participate in research. This population has lower enrollment in clinical trials compared to people diagnosed with cancer in childhood or adulthood.
“Typically, this age group is under studied,” says Griffith. “So, if I come across anything that needs the input of this age group, I share it with them, or we talk about it in group. I explain that they can help improve cancer care if they participate.”
A group leader who understands the needs of young adults with cancer
“Melody is a godsend,” Crider says. “She has a tendency to just kind of figure out when young folks are at Mayo.”
One day while Crider was at Mayo Clinic for treatment, her doctor told her she couldn’t leave because someone was coming to speak with her. It was Griffith, with an invitation to join the Young Adult Cancer Support Group.
“I’ve never had someone say so many things that were what I was feeling that I didn’t know I was feeling,” Crider says. “It was so reassuring because I had been going through diagnosis and treatment for six months and feeling really out of place within my own friend network. When she asked me about the support group, I was like, ‘Oh my gosh, yes, this is something I need to be a part of!'”
Crider has since found understanding, solace and guidance among members of the Young Adult Cancer Support Group. “They are there for you when a reoccurrence occurs, when you get unfavorable test results. They understand the roller coaster. It’s nice to have people that get it,” she says.
“I think a lot of people expect the group to be a stereotypical support group where you all sit around and talk about your feelings, and it’s kind of sad,” says Crider. “This group is not like that at all. We all have this unspoken bond in that we’ve all experienced something really terrible, and it makes it hard to relate to our own age groups.”
“It’s pretty irreverent sometimes. And sometimes the humor is kind of dark. That’s how they’re coping,” Griffith says. “We’ve had some hard times where we have lost group members, and we’ll have to talk about that. It’s sort of like putting a mirror in front of their face. They’re thinking, ‘Wow, that could have been me,’ or ‘Why wasn’t that me?’ We talk about those things. We don’t pretend everything’s fine.”
“They helped me figure out how to get back into the real world,” says Crider. “All my friends were getting married and having kids, and I was coming out of this weird fight where I didn’t even know if I’d come out at the end of it. It’s a very strange place to be. And I feel like the group has helped me with that transition. Because I don’t feel awkward talking to them. I don’t have to manufacture small talk. We all know what it’s like to go through something so life-altering.”
A longer road for young adults as cancer survivors
As of 2020, the number of adolescent and young adult cancer survivors in the U.S. was estimated at more than 633,000 and growing, according to the National Cancer Institute. These young cancer survivors are at risk of a range of health problems as late effects from their treatment, so Griffith is careful to tell group members that it is important to check in regularly with their oncologists and primary care providers about survivorship care.
To help young adults understand the importance of survivorship care, Griffith and her team are developing a survivorship course for young adult cancer survivors. Like the Young Adult Cancer Support Group, the course will be open to all young adults with cancer, not just Mayo Clinic patients.
“As a young adult entering survivorship, in theory, we have a much longer lifetime ahead of us to survive,” Crider says. “So, it’s something that we live with a lot longer than when you’re old and you’re diagnosed with cancer. You have years ahead of you — hopefully, 30, 40 or 50 years. It’s a lot more of life to figure out.”
This article originally appeared on the Mayo Clinic Cancer Center Blog.