07/07/08 - Cancer's Forgotten Generation

They're underrepresented in clinical trials and sometimes misdiagnosed. Their rates are rising. But as young adult patients mobilize, Hayley Mick finds, they're becoming 'the buzz in onco-town'

The biopsy on the bump inside Karalee Grant's nostril had come back cancerous, the doctor said.

Ms. Grant doubled over and wept. The 19-year-old from Winnipeg had spent a year popping Tylenol 3 and Claritin tablets for terrible headaches that doctors had attributed to allergies and sinus infections.

She had lobbied to have the test done. And yet, she had never expected to hear those words. "At 19, you think you're invincible," she said. "Cancer is for old people."

Since her rare sinus cancer was diagnosed two years ago, Ms. Grant has navigated the lonely rites of passage that are the hallmark of cancer's forgotten generation - the approximately 6,500 Canadians aged 15 to 39 diagnosed with cancer each year.

Too old to garner the widespread sympathy and support attached to pediatric cancers, and too disparate and disorganized to have their own ribbon campaign, the group is under-researched, experts say - vastly underrepresented in clinical trials, and in some cases misdiagnosed because they are thought to be too young to have cancer.

Rates of certain cancers in adults aged 20 to 44 mysteriously spiked in the two decades prior to 2006, including a 54-per-cent rise in testicular cancer and 156-per-cent increase in thyroid cancers in women, according to a comprehensive report from Cancer Care Ontario and the federal Public Health Agency of Canada.

Cancer incidence among young Canadian women is rising, according to a new federal report, while it has either stabilized or dropped in children and seniors of both sexes.

"These patients deserve better. I truly believe they are underserved," says Dr. Petr Kavan, the oncologist who heads the adolescent and young adult cancer program at McGill University, one of the only oncology centres in Canada that specializes in the age group.

Now some patients are rallying to reverse these trends. National organizations such as Young Adult Cancer Canada are pushing for more research. Websites such as imtooyoungforthis.org and planetcancer.com are offering the peer support that patients say is missing in oncology wards. And in the past three years, the number of official Canadian support groups has almost doubled to nine.

"We're the buzz in onco-town," says Matthew Zachary, 35, the Brooklyn-based creator of imtooyoungforthis.org, a 15-month-old site voted one of Time magazine's best websites for 2007, which is starting to make inroads in Canada.

Yet, isolation is still a major obstacle. At an age when most of her friends were focused on dating and careers, Ms. Grant was tethered to a chemo pole, grappling with infertility and planning her will.

"I was thinking about death and mortality," she said. "They weren't really ready to deal with that."

Mortality was the last thing on Darren Neuberger's mind heading into Labour Day weekend in 2003. The 34-year-old had started a new job measuring oil wells in northern Alberta. He was in the best shape of his life - except for a dry cough that had lingered for six months. He visited a walk-in clinic twice, but as he was 34 and seemingly healthy, they told him it was just a cold.

On Friday, after he'd played two baseball games and knocked back some beers, Mr. Neuberger's wife, Jalene, insisted he go to emergency for a chest X-ray.

Days later he was diagnosed with acute lymphocytic leukemia, a cancer of the blood and bone marrow that is the most common type of cancer in children and sometimes strikes adults. "I call it the longest long weekend of my life," Mr. Neuberger says.

Cancer in young adults is relatively rare: They constitute 2 to 9 per cent of all cases. About 42 per cent of all cancers are diagnosed in people over the age of 70. The types of cancers doctors see also vary with age: For example, the three most common cancers in young Canadian men are testicular, non-Hodgkin lymphoma and melanoma, compared with prostate, lung and colorectal in men older than 45.

Of $76-million spent on cancer research in 2006, less than 1 per cent went to studies focused on young adults with cancer, according to a study in the 2006 Report Card on Cancer in Canada written by Geoff Eaton, 32, the executive director of Young Adult Cancer Canada.

Clinical trials rarely include older teenagers and young adults, adds Thierry Muanza, a radiation oncologist and medical co-director of McGill's young adult cancer program. Roughly 80 per cent of child cancer patients participate in clinical trials or are treated according to a registered protocol established by a clinical trial, whereas for adolescents and young adults, the number is about 1 to 2 per cent, he said. (The figure for adults 40 and older is 20 per cent.)

There's also a paucity of data on the young adult crowd, Dr. Kavan says. While systems are in place for banking tissues from pediatric cancer patients, that system is lacking for young adults.

Hospitals also need to recognize that young adults have social needs that are not being met in most oncology wards. "They do not like a typical adult setting," he says. "They want to be surrounded ... by patients with similar age."

When non-Hodgkin lymphoma appeared for the second time in Renee Bennett's blood, the 35-year-old mother of two begged her nurses not to send her back to the oncology ward where she had been surrounded by elderly patients. But there was nowhere else to go.

"I was mad because if I had the ability to chat with someone my age, we might have something in common," said Ms. Bennett.

She searched online and found other young people "who get it" - a group based in St. John's called RealtimeCancer.org (renamed Young Adult Cancer Canada earlier this year). Last summer, Ms. Bennett attended its annual retreat for young people with cancer, in Quebec.

So did Ms. Grant. By that time she had lost friends, the strength to play hockey or wear shoes without ankle support, and the ability to bear children. She had undergone months of chemo, and a 17-hour operation to remove a hockey-puck-sized tumour behind her nose. She had been told she was cancer-free - and a year later learned the cancer had spread to both lungs. That was discovered after she went to emergency with what she thought was bronchitis. Doctors had been looking for signs of cancer returning, but only above her neck.

At camp, Ms. Grant says, it was a relief to meet other young people who knew what that type of compound trauma was like.

"It was almost like instant family," she said. "They weren't worried about who their next boyfriend is. They were worried about writing their wills."

It took Mr. Neuberger three years, more than 600 chemo treatments and "one all-inclusive trip to intensive care" to beat his cancer into remission. After his last hit of chemo, he and Jalene went to a fancy restaurant to celebrate.

"I had four beers," he said. "It was like, 'Ah, normal.' "

But the next morning, he was smacked with what many survivors say can be just as tough as beating cancer: life after cancer.

He was 39, unemployed and too weak to return to the oil fields. His sperm had been frozen, but having children seemed less desirable than it had before cancer. For three years, his wife had paid most of the bills.

"It was like, what do I do now?"

Mr. Neuberger, who now works in sales, recently launched the first Canadian branch of imtooyoungforthis.org. He also talks to school groups about prevention. But he and other activists know they have a long way to go before their rallying cry becomes loud enough to garner the same clout - and donor support - as other cancers such as breast, prostate and pediatric cancers.

"A lot of the young adults just want to get the fuck out of cancer," said Mr. Eaton, of Young Adult Cancer Canada. "You only have your 20s once, and if you're like me and you spent a lot of it in chemo, you feel like you missed out."

In April, Ms. Grant made the wrenching decision to stop treatment. Her prognosis isn't good, but she wants to lead a normal life - have a job, go on trips to see her new friends in Toronto this summer.

The cancer hasn't spread since she stopped treatment. She's staying positive. Every so often, she tries on a pair of heeled sandals that used to belong to her mother - until Ms. Grant, a huge shoe fan, stole them from her closet.

One day, she says, she'll have the strength to wear them out.