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Teen, young adult cancer patients fall through the cracks: Can technology help?

"I had come home from a run and was sitting down on my couch to eat dinner, and I heard a gunshot go off inside my he...

Posted: Dec. 20, 2017 8:56 AM
Updated: Dec. 22, 2017 1:21 AM

"I had come home from a run and was sitting down on my couch to eat dinner, and I heard a gunshot go off inside my head," Sarah Stream says. On that October day in 2009, she was 15 years old and just six weeks into her sophomore year of high school.

Startled, she jumped. But in the next room, her father and his friends carried on as if nothing had happened.

They hadn't heard any gunshots. They hadn't heard a thing.

Minutes later, Stream had a grand mal seizure.

Her mother called 911. An ambulance took her to the hospital, where her X-ray and CT scan came back clean. But later that week, an MRI showed a small low-grade tumor in the left temporal lobe of her brain. "They called it a DNE2 tumor, which is usually benign," Stream says, her low voice racing at a fast clip, like someone perpetually trying to catch up.

So began her eight-month trek to the operating room. In summer 2010, her tumor was surgically removed. "It's been completely successful, and I've been free of seizures and cancer since," Stream says, noting that the pathology report indicated the tumor was unexpectedly malignant -- cancer.

"The prognosis is very good. My chances of recurrence are very low," says Stream, who appears untouched by life-threatening illness. To look at her, she's just another healthy, 23-year-old middle school teacher.

Overall, her ordeal was "very humbling," she says. In the months before surgery, she couldn't go to school because she was having seizures on a daily basis. The time leading up to the operation "was a nightmare of a cocktail of drugs."

"That was very isolating," she says. "Being a teenager. you already have issues with fitting in and finding your identity and then ..." Unusually, she does not finish her sentence. "When people are diagnosed with cancer ..." Again, Stream pauses.

"People just don't know what to do. They don't know what to say to you. They don't know how to support you," she says in a burst. "Unfortunately, I had several friends, who I considered very good friends at the time," she laughs. "They kind of just dropped off the face of the earth."

She doesn't blame them, believing they were protective, trying to avoid telling her "all the cool stuff" they did at school while she was stuck at home. In the era of social media, though, Stream knew all they were doing, whether they told her or not.

Social media was both a hardship and a help in her time of need. Facebook added to her isolation, increasing her FOMO: Fear of Missing Out. At the time, she was unaware of any teen support groups on the social media site.

But after reading a newspaper article about a teen with a brain tumor, she turned to Facebook to track him down and make contact. "He was nice enough to talk back to me," Stream says, marveling at how similar his ordeal was to her own.

"I didn't think people my age got cancer," she says, her pain obvious. "Or I thought, if they got it, they didn't survive, and they were dead." This connection she made on Facebook was living, posting proof that others were out there and that they had survived.

She made other important connections while a cancer patient, including an unusual advocate: Roger Daltrey, former lead singer of the legendary rock band The Who.

"The best mental therapist for a teenager with cancer is another teenager with cancer," Daltrey says. Perhaps he learned this from Stream, who says he inspired her.

The 'in-betweeners'

Since 1989, Daltrey has focused his philanthropic efforts on cancer patients the same age as the young people who, decades earlier, made him a rock god. He is a big supporter of the Teenage Cancer Trust in the United Kingdom and co-founded Teen Cancer America, which sponsored the recent Adolescent and Young Adult Cancer Conference.

In a pre-recorded message delivered via big screens at the Atlanta Hyatt, host hotel for the conference, Daltrey says that research is "sorely lacking" for patients between the ages of 15 and 39, while separate sections in health care facilities for this age group are badly needed as well.

Teens and young adults with cancer are a special group with special needs. They have different cancers than young children and older adults -- plus they have unique social preferences, Daltrey says. For example, one study found that adolescent and young adult patients ranked the opportunity to meet other young adult survivors higher than receiving support from family and friends.

Yet teen and young adult cancer patients also have unique strengths. "Digital natives," they are making connections in social media and inspiring new technologies that will help themselves -- and others -- heal.

Based on his experience over the past 29 years, Daltrey refers to teens and young adult cancer patients as "the in-betweeners: too old to be treated as children, too young to be treated as adults."

It's a sentiment shared by Dr. Paul Grundy, a professor of pediatrics and oncology at the University of Alberta.

'Knowledge gap'

Teen and young adult cancer patients may live a long time, so it's "important to pay more attention to the quality of their survival -- and not just to their survival," Grundy says.

In other words, long-term side effects from their treatments, such as infertility, need to be avoided if possible or, when unavoidable, must be managed. A weaker heart caused by chemotherapy is not the same for an elderly adult who has only a decade left to live as it might be for someone with decades to go.

According to Grundy, the inspiration for singling out this demographic for special care can be found in a graph of US data from the 1980s and 1990s, showing improvement in survival among different age groups.

"In children and older adults, there had been substantial improvement in survival, but where the least amount of improvement had occurred was in this gap between ages 15 and 39," said Grundy, who is also an expert in pediatric, adolescent and young adult oncology with the Canadian Partnership Against Cancer.

Why worse improvement in survival for those patients?

"First of all, they get different cancers [usually] than either older or younger patients," he said. And even when teen and young adult patients get more familiar cancers, like breast cancer, it's usually in a more aggressive form.

There's also "a knowledge gap," Grundy said. "Most clinical trials are either in children, or they're in adults."

Clinical studies, which test medications for safety, dosage and effectiveness, have shown that children can tolerate more intense doses of chemotherapy than adults, he explained. Since people older than 40 are 98% of all adult cancer patients, they make up the overwhelming majority of adult clinical trials.

This means oncologists may be unsure what dose to give a teen or young adult, Grundy says.

Beyond medical issues, this patient group faces other hardships.

Primary among them is financial toxicity, says Christabel Cheung, 41, an assistant professor at the University of Hawai'i-Myron B. Thompson School of Social Work.

Disrupted lives

Cheung was diagnosed at 32 with Hodgkin lymphoma. After treatment, the cancer returned and she was diagnosed again at age 34.

"Thirty years ago, I would probably just have died," she says. "So what's it going to be like for someone like me?" This is the great unknown for teen and young cancer patients. How will they age, and how will they manage -- both financially and physically -- the disabling effects of their cancer treatments?

"We still don't know all the implications of that," Cheung says. Now "five years out from aggressive cancer treatments," she was in pulmonary rehab and did other things to address side effects thereafter.

Her life changed dramatically during her treatment. The energy-sapping chemotherapy and radiation led her to give up a coveted though demanding job as a gerontologist and executive director of San Francisco Village, a nonprofit promoting aging in place.

"When you spend your youth studying aging and then suddenly one day realize you might not age -- what a waste of time, right?" Cheung says with a laugh. Though her original career was disrupted by cancer, she earned a Ph.D. in social work and continued along a new path.

Today, Cheung calls herself an "embodied researcher": essentially, a researcher who is also a cancer patient.

"I'm really interested in the financial toxicity of cancer in this age group," she said. Those who become cancer patients at a young age find their school and/or work lives disrupted. And, unlike the majority of people who develop cancer -- elderly people -- teen and young adult patients usually lack a reserve of cash to pay for their treatments and out-of-work time.

Like others her age, Cheung found solace online.

"The most helpful was the Leukemia Lymphoma Society's private discussion boards," she says. "I could post questions and get a ton of wrong answers from patients across the country."

The immediate response was what mattered, not the information. It was the fact that other people were going through cancer or had gone through cancer that was helpful.

By comparison, social media focused on "survivors," a term Cheung finds "problematic." "You don't need to be courageous. It's enough that you had cancer," she says. "You can be weak, and it's fine."

Social media is also "full of messaging about the importance of family support," she says. She had unstable or nonexistent relationships with her family during her cancer years (though she has reconnected since). "Seeing all the positive family interactions on social media was sometimes a bit too depressing for me," she says. "I got off Facebook for three years."

Whether or not social media is a positive resource for teens and young adult patients, other technologies in development will certainly fill the gap.

Chatbots

Tools developed by Hopelab, a social innovation company focused on health, include video games designed for young people: Re-Mission and Re-Mission2.

"They were able to put on superpowers and pick up weapons and blast away cancer cells," says Chris McCarthy, Hopelab's vice president of strategy and innovation. Hopelab proved, in published scientific studies, that doing this improved survival rates of players.

In his work developing a new technology, McCarthy found that one of the biggest challenges facing young cancer patients is adapting to their new normal.

Specifically, teens and young adult cancer patients struggle "to build a new post-cancer identity, but because of fatigue and other life hardships," they don't "have the wherewithal to pull that off," McCarthy says. Young cancer patients also expressed the need to share their wisdom within the community.

"These two insights started driving our work," he says. One result is Cancer Mindshift, a chatbot that delivers psychological interventions for adolescent and young adult cancer survivors who struggle with anxiety and depression. (If you've ever shopped online, you've had one pop up on your screen: "Do you need help?")

Health chatbots, unlike commercial ones, simulate human interaction but do not replace real therapy or real conversations, McCarthy explains.

Built on messaging platforms, chatbots are "ubiquitous," and patients who spend a considerable portion of time texting find them an easy way to go, he says.

Cancer Mindshift, which is still in development, "nudges" teens and young adults to take on bite-size activities to help them reintegrate into normal activities and forge stronger connections. What makes the Cancer Mindshift chatbot unique is explicit directives and a dose of reality in the form of video clips of young patients discussing their experiences.

"When you boost connection, purpose and control, you can decrease depression, anxiety, PTSD and fatigue," McCarthy says.

Stream, who had an anxiety attack shortly after her diagnosis and took medication for years, credits cognitive behavioral therapy with a lot of her recovery. She is married now and tries to be a resource for people and friends who have anxiety or depression.

Though therapy can be tough, "it works. It does work," Stream says. "I've been off of medication for a year and working really hard."

Teens and young adults have different, more aggressive cancers than young children and older adults

With fewer clinical trials focused on this age group, a "knowledge gap" also exists

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