By Heidi Schultz Adams

The nurse in nuclear medicine looked back and forth from me to my mother, confused. “I’m the patient,” I explained, not-so-patiently. It was the umpteenth time I had absolved my mother of cancer during the staging process following my diagnosis at age 26 with Ewing’s sarcoma, a rare bone cancer that typically occurs in children. But as the nurse led me off to my bone scan, I looked back at the waiting room and knew her confusion was warranted. Everyone in there had me by at least 20 years.

It was no surprise that people had a hard time believing I had cancer. I had always thought cancer was something that happened to old people. Or little kids. But not me; not in the prime years of my health.

In fact, I learned later that nearly 70,000 young adults in their 20s and 30s are diagnosed with cancer every year. According to data from the National Cancer Institute (NCI), cancer occurs in 15- to 29-year-olds nearly three times as often as in patients under age 15. Even more surprising, cancer is actually the third leading cause of death among 20- to 39-year-olds after accidents and homicide.

However, unaware of those statistics, I joined most people in believing that cancer doesn’t happen to young adults—one reason it took me two months to even darken a doctor’s door after my ankle started hurting. Seven months, four doctors, and one physical therapist later, the pain that jolted me awake every night was finally diagnosed as cancer. Seven months may seem like an inexcusably long time, but why would I—or anyone, for that matter—ever have suspected cancer? I played soccer twice a week, didn’t smoke, ate well, and didn’t do drugs. Besides the occasional hangover (a fairly reliable symptom of young adulthood), I was in disgustingly perfect health. Or so I thought.

The Not-So-Invincible Young Adult
“It’s the age of invincibility,” says Archie Bleyer, MD, chair of the Adolescent/Young Adult Initiative (A/YA), Children’s Oncology Group (COG), and professor of pediatrics, M. D. Anderson Cancer Center, Houston.

“So if you’re supposed to be healthy and you have early signs of cancer, well, it’s NOT cancer. Even if you admit that there’s a problem and it needs to be taken care of, as a young adult you frequently don’t have the time, money, or knowledge of where to go, who to ask, and how to negotiate this situation.” On top of that, warns Dr. Bleyer, “The physicians’ suspicions are often low, with symptoms attributed to physical exertion, fatigue, and stress.”

There are other reasons young adults may experience delayed diagnoses, says Dr. Bleyer. They may shrug off symptoms due to embarrassment, particularly if sexually sensitive areas such as the testicles or breasts are involved. They may give a limited or incomplete medical history. And they may not be receiving routine medical care due to economic constraints, lack of time, or, again, that dangerous feeling of invincibility.

Once a diagnosis is made, determining the appropriate treatment and finding the best care can still be tricky when it comes to young adults, who often straddle the line between adult and pediatric oncology. In which case, the question to ask is, “Who is the person who knows the most about my disease?” says Murray Brennan, MD, chairman of the Department of Surgery at Memorial Sloan-Kettering Cancer Center, New York. The cancers that typically affect young adults are rare, explains Dr. Brennan, citing bone and soft-tissue sarcomas and rare forms of leukemia and lymphoma. “So not only are they confronted by this enormous challenge without any preparation, but the best care is not always readily available because their doctor has probably never seen their type of cancer before—certainly not in young adults.”

Finding the best cancer care becomes even more of a challenge when you consider that even routine medical care can be a problem for young adults, who frequently lack health insurance. According to one study, young adults between 19 and 29 are twice as likely to be uninsured as children or older adults, accounting for more than a quarter of the nation’s 44 million uninsured.

Young adults are too old to be covered by their parents’ insurance or government programs for children, yet their careers may not be established enough for them to have a secure, full-time job with adequate health insurance. And even if they have “extra” money, they are less inclined to purchase individual insurance. The result, according to the study, is that young adults frequently forego preventive healthcare and may delay seeking treatment when sick—delays that can be devastating when it comes to cancer.

Life Interrupted
Cancer wasn’t just a detour for me. It was a head-on collision that changed every single thing in my life. After five glorious, nomadic years of living and working in London, Paris, and the Grand Canyon, I was now stuck in my parents’ spare bedroom for the foreseeable future. I had to quit my job, ask my parents for spending money, and get permission from my doctors to travel. And I certainly wasn’t dating.

Not that a cancer diagnosis isn’t terribly disruptive for everyone—it most certainly is. But for young adults, the impact of the disruption is magnified by where it falls on the curve of a lifetime.

Young adulthood is a stage of life that involves an enormous amount of becoming. It’s a time of life when we often make long-term decisions about employment, education, relationships, and family. At a time when I should have been asserting my independence and building a future, I was more dependent and less in control of my life than ever.

To make matters worse, because the young adult patient population is relatively small, many patients end up isolated and unable to find peers for critical emotional support. Although I was treated in Dallas, a major metropolitan area, it was nearly four months before I encountered another person close to my age. I tracked down John, a 20-year-old osteosarcoma patient, after I heard the distinctive sounds of the rock group U2 echoing through the hospital hallways.
It was an enormous release to find someone I could talk to about my experience. Although my “well” friends had been wonderfully supportive, it wasn’t the same as trading stories with someone in the same boat.

“A young adult patient’s friends frequently have a limited understanding of their illness,” says Ilyse Lesser, CSW, a social worker, therapist, and administrator of the Kristen Ann Carr Fund, which focuses on sarcoma research and young adult issues in New York City. “Older adults, who have more life experience of illness and death, can better relate to friends with cancer, but the young adult patient may feel caught in a no-man’s land. Their friends are moving forward with their lives and careers, while they may feel like they are, at best, standing still.”

Other issues may surface once treatment is over, according to Lesser. “Priorities may have shifted, so things that are important to their friends may no longer seem important to them: partying, hooking up, climbing the corporate ladder. Some young adults may find themselves dealing with a deep sense of loss—of innocence, time, energy—feeling like a 70-year-old in a 25-year-old’s body. This can be hard for their friends to understand. After all, how many young adults do you know who’ve had to face their own mortality?”

Finally on the Radar
Things are looking up for young adults. A recent and important step is that they are finally being identified and acknowledged as a separate group with distinct needs. “Progress is definitely being made,” says Doug Ulman, director of survivorship at the Lance Armstrong Foundation and founder of the Ulman Cancer Fund for Young Adults, one of the first support organizations for young adults. At 19, Ulman was diagnosed with chondrosarcoma, a cancer that usually occurs in the cartilage. Two years later, he faced melanoma.

“What’s really exciting is that the medical community is starting to address young adult issues,” Ulman says, “because it is the doctors who will drive the future of young adult cancer care.”

The A/YA of COG is a driving force behind the growing awareness. The initiative is a unique, NCI-sponsored collaboration between COG and several adult oncology cooperative groups. In just a few short years, they have developed eight task forces to work on everything from increasing young adult participation in clinical trials to addressing compliance issues.

“The goal of the A/YA Initiative is to achieve the same success for young adults as has been achieved for children and older adults,” says Dr. Bleyer. Although there has been steady overall reduction in national cancer mortality rates since 1975, NCI data show that young adults have continually lagged behind their older and younger counterparts. In 20- to 44-year-olds, the rate of improvement for five-year survival is less than half the average improvement for all ages. And in 25- to 34-year-olds, the data show no improvement at all in the past quarter-century.

Finding Friends
As the A/YA Initiative works within the medical community, complementary support initiatives for young adult patients are also springing up around the country. Some are organizations founded by young adult survivors who personally experienced a void in services. Others have appeared as national cancer support organizations that have begun to realize the unmet needs of young adults.

Now 35 years old, I am on the verge of leaving young adulthood. But only now can I clearly see the difference cancer made in my life: the new paths it opened and the way it changed how I approach situations, handle relationships, think of time.

And only now can I finally admit to a twinge of pleasure when people hear I had cancer and involuntarily respond, “But you’re so young.”

Editor’s note: Heidi Schultz Adams is the founder of Planet Cancer.