When Shannon Voelkel received a diagnosis in 2016 of diffuse B-cell non-Hodgkin’s lymphoma (DLBCL) at age 23, she was treated in the pediatric unit along with infants and young children.
During her 6-month chemotherapy regimen, Voelkel said it was strange and discomforting not seeing any other young adults around her.
“I could not relate to anyone during that time. I was an in-patient on the hospital’s ninth floor, and I took laps around the hall hoping to see someone my age,” she said. “I’d scout out younger people, but there was no one.”
It wasn’t until her third round of chemo that Voelkel found another young adult woman with the same diagnosis.
“It was a game-changer,” Voelkel told Healthline. “I overloaded her the first time I met her. I was the veteran-if-not-seasoned patient and I shared with her all that I had already learned. We supported each other.”
Voelkel said that for adolescents and young adults, a cancer diagnosis is arguably even harder than it is for a child or for an older adult.
“You’re just getting your footing in the world and developing that foundation. A cancer diagnosis stops you in your tracks,” she said.
“You wonder what job you can take given how tired you are, how you’ll get back to school, how you’re going to navigate the dating world, how you’ll explain these things to friends and co-workers who have no idea what you are going through,” she added.
The unique needs of adolescents and young adults like Voelkel who have cancer diagnoses extend far beyond psychosocial needs.
But are adolescent and young adult cancer patients still falling through the cracks?
A new study from the American Cancer Society examining cancer in adolescents and young adult patients ages 15 to 39 concludes that, in the United States, nearly 90,000 cases and more than 9,000 cancer deaths will occur in 2020 in this age group.
The study concluded that overall cancer rates increased in all young adult age groups between 2007 and 2016.
This was largely driven by thyroid cancer, which rose by approximately 3 percent annually among those ages 20 to 39 and 4 percent among those ages 15 to 19.
Incidence also increased in most age groups for several cancers linked to obesity, including kidney (3 percent annually across all age groups), uterine corpus (3 percent in the group ages 20 to 39), and colorectum (about 1 percent in the group ages 20 to 39).
Rates declined for melanoma in the group ages 15 to 29 (4 to 6 percent annually) but remained stable among those ages 30 to 39.
Young adults and adolescents have a higher risk of progression and death from their original cancer, according to researchers.
Compared to those with cancer in older groups, this younger age group has a higher risk of long-term and late effects, including infertility, sexual dysfunction, cardiovascular disease, and other future cancers.
The report cites increasing evidence that tumors in adolescents and young adults are molecularly distinct from those in younger or older populations, suggesting differences in both cause and treatment options.
In addition, studies have shown that compared to childhood cancer survivors, young adults and adolescents have a higher risk of progression and death from their original cancer.
Kimberly D. Miller, MPH, an American Cancer Society epidemiologist and author of the study, told Healthline that while there has been progress over the past decade in the scientific understanding of cancer in adolescents and young adults, several research gaps in causes, basic biology, treatment, and survivorship remain.
“The bottom line is that more adolescents and young adults are being diagnosed with cancer, despite new efforts focused on this historically under-represented age group,” she said.
Significantly, she explained, when adolescents and young adults are in a space dedicated to people of their age group, studies have shown that this dramatically improves outcomes and survival.
The study reported that cancer incidence rates are similar by gender in teens ages 15 to 19.
However, rates for women are 30 percent higher in young adults ages 20 to 29 and nearly double in those 30 to 39, primarily because of the substantially higher incidence of breast and thyroid cancers and skin melanoma in women.
The study states that thyroid cancer incidence rates among women in their 20s are more than five times higher than those among men.
Although lung cancer is rare in young adults, the study showed that rates among women in their 30s are higher than those among men despite lower smoking prevalence in women. Research on this is ongoing.
The report points out that while overall survival rates are similar to children’s rates, the statistics mask poor survival rates in some rare cancers that affect young adults.
“Racial disparities for several cancers are largest in this age group in part because [young adults and adolescents] are particularly financially vulnerable,” Miller said. “Specifically, health insurance coverage among [young adults, adolescents] in their late 20s and 30s is lower than that among other age groups.”
The study also found that 5-year survival for all cancer types combined is lower in communities of color, especially individuals who are non-Hispanic Black (75 percent) compared with those who are non-Hispanic White (88 percent).
The study noted that these disparities are not only driven by differences in timeliness and quality of diagnosis and treatment as a result of inequities in insurance status and access to care, but also by differences in tumor characteristics, such as estrogen receptor status for female breast cancer.
Survivors are also at higher risk of long-term effects such as infertility, sexual dysfunction, heart disease, and other cancers later in life.
Declining mortality rates for blood cancers, such as lymphoma and leukemia, in young adults and teens in the United States point toward progress in effective treatment for these cancers in recent decades.
This progress, though, has lagged behind that for children for some cancers, especially in the older age groups, the study concluded.
Further progress in reducing cancer morbidity and mortality among teens and young adults could be addressed through increasing clinical trial enrollment, more research on causes, and greater attention given to symptoms and signs of cancer, Miller said.
Further monitoring of population-based trends for cancers for which mortality rates are increasing is warranted, Miller added.
She noted that teens and young adults with cancer are still often lumped with either younger children or older adults, but neither group matches up with them.
“It wasn’t until the mid-2000s that we finally began to really look at this. There is still very limited research on [adolescents and young adults] compared to childhood cancer,” Miller said.
“There is good news in that mortality rates in [adolescents and young adults] have rapidly declined over the last decade for several cancers, including melanoma and both Hodgkin’s and non-Hodgkin’s lymphoma,” she added.
“But we still need to consider that several disparities for [this age group] compared to other age groups persist. For example, progress against acute lymphocytic leukemia in [adolescents and young adults] lags behind that for children, in part because [this cancer] tends to be more aggressive in [adolescents and young adults].”
There are new resources for adolescents and young adults with cancer, including an increasing number of dedicated studies on the needs of this age group as well as more and better advocacy organizations working to improve outcomes.
Adolescents and young adults are finally getting their own spaces in hospitals, their own clinical trials, their own research, and their own nonprofit support organizations, said Miller.
In response to the challenges that young people with cancer and health professional face, for example, Dr. Archie Bleyer, a pediatric oncologist at the Oregon Health & Science University, joined other experts and advocacy groups to establish a COVID website for adolescents and young adults to provide additional guidance and support.
Other organizations for teens and young adults with cancer include:
Miller noted that Teen Cancer America, a nonprofit organization in the United States, has been a strong ally with the American Cancer Society in advocating for adolescents and young adults.
“Some of my study’s co-authors are integrated with the Teen Cancer America community. They’ve reached out to us to provide comments and leadership and asked that we inform them when we come out with something,” said Miller.
“Teen Cancer America is a close-knit, effective group. It’s wonderful to have their support,” said Miller.
She noted that the organization’s roots can be traced to the United Kingdom, where Roger Daltrey and Pete Townshend of the rock band The Who co-founded Teenage Cancer Trust 30 years ago.
After more than a decade of success developing spaces in United Kingdom cancer hospitals for teens and young adults, Miller said, Daltrey brought the idea to the United States and created Teen Cancer America.
He did it with the help of Simon Davies, who led the U.K. group and is now Teen Cancer America’s executive director, and with the assistance of Rebecca Rothstein, the organization’s chairwoman.
The first hospital unit using Teen Cancer America’s advocacy blueprint opened in the Ronald Reagan UCLA Medical Center in November 2012.
Teen Cancer America now has 42 cancer hospital partners in the United States and more than 60 other hospitals have reached out for guidance on how to develop cancer programs and spaces for teens and young adults.
“This is something I’ve been passionate about for 30 years,” Daltrey told Healthline. “When I saw the suffering teen and young adult cancer patients go through, the isolation they feel when they are placed in wards with young children or really old adults, it was like a light bulb went on in my head.”
Daltrey said the American Cancer Society’s new report supports Teen Cancer America’s mission to provide every young person with cancer in the United States access to specialized programs and facilities.
Davies added that the report confirms his organization’s view that grouping adolescents with children as well as young adults with the elderly during cancer treatment has masked the diversity and complexity of their cancers.
“This study is evidence that our programs which combine pediatric and adult specialist teams are the way forward,” he told Healthline.
“[Adolescents and young adults] have a right to expect dedicated health facilities and programs. In all other aspects of society they are recognized, so why is the health system the only institution that fails to do so?” Davies said.
Davies said his organization’s goal is to provide a model for programs in every U.S. hospital as well as provide free professional guidance and ongoing support.
After Voelkel was treated for her lymphoma and went back into remission, she joined Duke Cancer Institute’s teen and young adult cancer program, which last year received a $400,000 boost from Teen Cancer America and First Citizens Bank.
When Sarah Sterner received a brain cancer diagnosis at age 15, she was just 6 weeks into her sophomore year of high school.
Sterner suffered a grand mal seizure. The initial scans in the emergency room came back clean, but her family was still concerned.
“My dad said we needed to get an MRI. He said something just isn’t right,” Sterner told Healthline. “And he was right. It came back as cancer, which wasn’t even on my radar.”
Sterner, a drummer and music lover, was uncomfortable being treated in the children’s ward. It made her feel even more isolated than she felt when she was first diagnosed.
She said she loves kids but was uncomfortable.
“People at that age are focused on figuring out our identity and social life and peer relationships,” said Sterner, who is married, lives in an Atlanta suburb, and works as a middle school science and social studies teacher.
She said it was Daltrey who convinced her that she should fight for cancer patients in her age group.
“On one of the online forums for The Who, my dad’s favorite band, Roger found about my cancer and that I was a Who fan,” Sterner explained.
“I was diagnosed in September 2009 and my dad had tickets to see Roger’s solo show in Nashville in October 2009. My dad thought it would be cool if we could say hi to Roger after the show,” she said.
“My dad is more of an extrovert than I am. I was mortified. I told him that you just don’t ask people for stuff like that, he’ll think we are weird stalkers,” Sterner said.
But Daltrey had a far different reaction.
“When Roger found out about me, he said he would love to meet me. He gave us backstage passes, and we have been in touch with each other ever since,” she said. “He is the kindest person, a salt-of-the-earth guy. What you see is what you get. He’s a genuinely kind and good man.”
This wasn’t just a one-time meeting. It has become an enduring friendship.
“It’s been 11 years, and we are still friends,” Sterner said. “When you look at someone with a passion like Roger’s, it reminds you that as teens and young adults, we don’t have to accept things as they are. When you see a problem in the world, it is OK to get fired up and work to make things better.”
Sterner, who still loves rock and roll, says her experiences as an adolescent cancer patient — good and bad — have given her certain insights about life that she now passes down to her students.
“I think I have a pretty good understanding of the psychology of that age group,” she said, “and the issues they have to deal with in their life.”