April 17, 2009

Researchers say there is 'lack of appreciation' in health community for challenges young cancer patients face in getting proper support

From Friday's Globe and Mail, April 17, 2009

The number of teenagers and young adults developing cancer is on the rise, and they face tough challenges getting proper diagnosis and treatment, according to a new report.

There are often delays in diagnosis - largely because doctors rarely consider that young adults could have cancer, the report says. Young people often don't feel comfortable in support groups designed for older adults, and often deal with devastating side effects of treatment such as infertility and substantially higher odds of cancer later in life.

"Young people need support from diagnosis to cure and beyond," said Ronald Barr, a professor of pediatrics at McMaster University in Hamilton, and chair of the adolescents and young adults committee at the Canadian Cancer Society.

The society's report - Cancer Statistics 2009 - says about 2,075 young people aged 15 to 29 will be diagnosed with cancer this year. About 325 cancer deaths are expected in this age group, which represents 1.5 per cent of total cancer deaths.

But the relatively small number of deaths doesn't reflect the huge impact the disease has on the young patients, their families and society, said Loraine Marrett, a senior scientist at Cancer Care Ontario and chair of the statistics steering committee at the cancer society. There is a "lack of appreciation" for the patterns of cancer in young people, she said, "and for the challenges they face fighting a deadly disease at a time when they should be studying, building careers and starting families."

Sommer Ellis was fresh out of high school and looking forward to her first day at the University of Western Ontario when she was diagnosed with cancer in 2004. It was only because her mother tends to worry that she went to the doctor complaining of swollen glands, she said.

"I didn't think cancer was even a possibility for me because I was so young," said Ms. Ellis, now 24. "Then the oncologist came in smiling with a bounce in her step and said, 'I have great news. You have Hodgkin's lymphoma.' I thought that was an oxymoron, but she explained that Hodgkin's was one of the best cancer diagnoses to have."

The hours of difficult, sickening chemotherapy began right away, yet Ms. Ellis resolved to go ahead with her studies, signing up for a full course load. She arrived at Western that September wearing a blond wig to hide her baldness. Every Friday morning she went to her biology lab, and every Friday afternoon to the cancer ward for more treatment. While her friends spent weekends recovering from long nights of drinking and dancing, she tried to recover from the chemicals being fed to her intravenously.

"It was life-altering, that whole year. It defined who I am," she said. "But I wanted to lead a normal life and refused to let it take over."

Ms. Ellis survived and went on to become an active volunteer with cancer charities. She now works in public relations in Toronto.

Shawn Sajkowski was 25 and had just landed a high-tech job when he was diagnosed with non-Hodgkin's lymphoma, the most common cancer diagnosis in young people.

Over the next six years, Mr. Sajkowski suffered through three relapses, 19 rounds of chemotherapy and an arduous stem-cell transplant. He missed 20 months of work, and his long-term relationship collapsed under the strain.

"I felt cheated," he said.

Lymphomas are one of the most commonly diagnosed types of cancer in young people, the report says. Among young women, thyroid cancer is the most frequently diagnosed, while among young men it is testicular cancer. However, leukemia accounts for the most cancer deaths in this age group, regardless of gender.

The overall incidence of cancer among young people has risen slowly but steadily over the past decade. That is due, in part, to better detection, but scientists simply do not know why testicular and thyroid cancer rates are climbing, said Heather Logan, senior director of cancer control policy at the Canadian Cancer Society.

The silver lining is that the death rate has declined: The five-year survival rate for young adults is 85 per cent, better than the rate for children (82 per cent) and older adults (62 per cent). Ms. Logan said young people need to be more aware of their bodies and take cancer prevention seriously. In particular, young men should be conscious of changes in their testicles that could be indicative of cancer, and young women should get regular Pap tests, consider getting the HPV vaccine and be aware of lumps in their breasts.

More generally, young people should make lifestyle choices to reduce their future cancer risk, including avoiding overexposure to the sun and tanning beds, not smoking, drinking alcohol in moderation, eating a healthy diet, being active, maintaining a healthy body weight and not engaging in risky sexual activity, she said.

An estimated 171,000 new cases of cancer will be diagnosed in Canada in 2009 - about one every three minutes, the report says. (This total excludes 75,100 non-melanoma skin cancers.) About 75,300 deaths from cancer are expected to occur this year - one every seven minutes.

The incidence of cancer is stable in men and up slightly in women, while the mortality rate is falling for both genders, Ms. Logan said.

The most common cancers are prostate in men (25,500 new cases in 2009) and breast cancer (22,700 cases in women and 180 in men). The biggest cancer killer is, by far, lung cancer, which will cause an estimated 20,500 deaths this year, followed by colorectal cancer at 9,100 deaths.