From www.kbia.org
By Rebecca Smith
29-year-old Zach Heath was diagnosed with Stage 4 colon cancer on Christmas Eve last year. His response was to bury himself in his basement with a PlayStation 4 and Call of Duty.
“[I] just shot people in video games for about eight hours, and that was how I kind of released my frustration,” he says.
Adolescent and young adult (or AYA) cancers account for some five percent of all cancer diagnoses or roughly 70,000 each year. Facing cancer as a young adult comes with its own set of challenges, many of them psychosocial, and experts say support for this vulnerable age group is often lacking.
Take Zach. His family has a long history of cancer. But as an MBA student and active athlete, cancer was the furthest thing from his mind when he started experiencing intense abdominal pains and losing weight.
And his treatment—surgery that removed most of his colon and several rounds of chemotherapy—left him with questions about his future and hard decisions to make quickly. When he started chemo, at first nobody told him the treatment could affect his ability to have kids.
“We didn’t have a conversation about that until my second round of chemo,” he recalls. “My doctor said ‘Yeah. You’re probably fine.’ But still, ‘probably’ is not 100 percent.”
Dr. Barbara Gruner of Women’s and Children’s Hospital in Columbia, Missouri, works with adolescent and young adult cancer patients, and says many of them are blindsided by their diagnosis.
“They’re young. They’re strong. They’re in good health,” she said. “Then this comes out of left field and makes you question your identity. What do I have to look forward to? What is life going to be like?”
The National Cancer Institute states that these cancer patients often fall into a “no man’s land” between pediatric and adult oncology.
People in the AYA patient group are generally working toward establishing their adult identity, and a cancer diagnosis can alter those plans significantly. Cancer can result in lost independence. It can also mean delays in starting college, a career or a family. Cancer treatments can also lead to persistent questions about fertility and intimacy. Cancer can make people feel isolated and alone.
Matthew Zachary, a national advocate for AYA cancer patients, dealt with brain cancer himself during his senior year of college. He says the sense of isolation was overwhelming.
He recalls: “I went seven years not knowing I had a peer.”
Cancer derailed his life. He lost weight, his hair fell out; he became impotent and had difficulty eating. He says once he completed treatment, the doctors “kicked me out” and expected him to get back to life as if nothing had happened.
His answer to this lack of support was to start an online community, Stupid Cancer, in 2007. The site serves as a resource and community for people struggling with AYA cancers and life after cancer, essentially everything Matthew wished he had when he was dealing with cancer himself.
The popularity of Stupid Cancer – it has more than 330,000 Facebook likes – shows that many other young cancer patients are dealing with many of the same questions and sense of isolation Matthew was. And now the medical community is starting to give this patient population more attention.
Dr. Leonard Sender runs the AYA cancer program at the Children’s Hospital of Orange County and is the editor-in-chief of the Journal of Adolescent and Young Adult Oncology. He says doctors need to consider the specific needs of this group and offer more support services.
For example, he says, “every patient should be put into contact with Stupid Cancer and all of the other organizations that are out there.”
Sender adds support services need to be paired with additional research on cancer in young people. Otherwise, doctors are “failing the patient population.”
“[We] need to think about the disease a little differently… the number of years left if they survive is greater,” he says.
He points out that if someone survives cancer at 25 years old, as opposed to 70 years old, they could be facing 50 or more years with the lasting implications of their disease and treatment.
Improving treatment options and reducing lasting repercussions is a goal of the federally-backed Cancer MoonShot 2020. Sender works with the program and helps design clinical trials specifically for young people with cancer.
Zach Heath recently found out that he’s officially in remission, and is now trying to figure out how the long-term effects of his cancer and treatment – the removal of most of his colon, the fact he could relapse and chemo’s impact on his fertility – will affect dating and marriage.
“I’m 29 and a single guy now, and how do I have that conversation with somebody? Do I? Is that something I have to say on the first date?”
He also fears his health history could be a red flag for potential employers—he recently graduated with his MBA and is looking for a job.
“If you have somebody that has the exact same credentials, and you know one has had cancer and major health issues, and one hasn’t – which one are you going to hire?”
Zach was candid on social media, posting photos of his treatments and surgery on his blog – posts he now realizes could easily turn up in an online search.
For now, Zach is back at the CrossFit gym, working at a start-up and adjusting to life in remission. In the last few months, he’s also connected with Stupid Cancer and Matthew Zachary.
Matthew says when it comes to the needs of AYA cancer patients, he wants patients to advocate for themselves about what they need – whether it’s asking more questions about fertility and clinical trials or just reaching out to others who have dealt with the same thing.
Stupid Cancer also tries to work with young adult cancer patients to create communities – it already hosts get-togethers in different cities for AYA cancer patients and survivors, and has regional support groups throughout the country.
Zach says he’s spoken with Matthew and may go to a Stupid Cancer event in New York in September. He’s also working on turning his blog into a book to further share his experiences with cancer as a 29-year-old.
But most of all, Zach adds that he wants to put some distance between himself and the cancer patient label, and just get back to life – no matter what’s next.
“I don’t know what’s next. Hopefully the two start-ups I work for both do really well, and hopefully I stay cancer free,” Zach says. “Hopefully I can gain some weight back, and I don’t know, like I said, time is not infinite anymore. So why sit around when you can do something? There are only so many tomorrows.”
This story was produced by Side Effects Public Media, a reporting collaborative focused on public health.
