In November 2007, Brandy Liíªn Worrall joined the ranks of the one in nine Canadian women diagnosed with breast cancer in their lifetime. But she hardly conformed to the typical image of the postmenopausal cancer patient.
A community organizer and MFA student in creative writing at UBC, Worrall was 31 years old and the mother of two young children: Mylo, now three, and Chloe, five. Obtaining her diagnosis was far from easy. Given her age and lack of a family history of cancer, Worrall says her doctor initially brushed aside her concerns.
“He said, ”˜Well, it can’t be breast cancer. You’re only 31; it’s probably hormonal,’ ” Worrall recalls in conversation at her East Van duplex as Mylo putters in his bedroom nearby. “Every time a young woman goes to get an annual physical, they teach her how to check for lumps and examine yourself”¦I kind of felt kind of like, ”˜What am I checking myself for if you’re not going to take me seriously?’ ”
Three months later, the lump was bigger and began to hurt. Worrall returned to the clinic and “fortunately, my family doctor wasn’t there,” she says. She saw a different physician in the clinic who referred her for an ultrasound, suspecting a cyst. It was cancer.
“I had three tumours, so it was locally advanced,” Worrall recounts. “I was angry, because I kept saying to myself, ”˜I don’t know what difference three months would have made.’”¦What would it have hurt to give me an ultrasound when I first went in?”
Worrall will never know what difference those three months would have made. Last April, after intensive chemotherapy and radiation to blast any microinvasion that might be occurring, she underwent a double mastectomy. Compounding the tragedy was the fact that days prior to her diagnosis, her husband, UBC professor of history Henry Yu, had lost his 42-year-old brother, a nonsmoker, to lung cancer. Worrall, like her brother-in-law, had joined a strange alternate world, one marked by isolation and scientific neglect.
The most recent statistics available from the Canadian Cancer Society paint a fairly optimistic scene regarding cancer mortality rates in general: they have declined slowly in men since peaking in 1988, and although lung cancer mortality rates are increasing in women, there has been a 20-percent decline in mortality rates in other cancers over the past 30 years. When it comes to breast cancer, the age-standardized mortality rate has fallen by more than 25 percent since 1986.
But when cancers among adolescents and young adults are examined separately, the numbers are far less optimistic. In August 2007, an article in the journal Science noted that survival rates for 15- to 39-year-olds have “been virtually frozen since about 1975”, and that breast, colon, bone, certain lymphomas, and Ewing’s sarcoma are all likelier to kill sufferers in this age group.
According to a study in the 2007 Report Card on Cancer in Canada written by Geoff Eaton, executive director of the Newfoundland- and Labrador-based Young Adult Cancer Canada, the five-year survival rate for those aged 30 to 35 actually declined by 0.18 percent between 1975 and 1997. For unknown reasons, some cancers are actually increasing among young adults: non-Hodgkins lymphoma in young women and testicular cancer in young men, along with cancers of the thyroid, lung, and brain in both sexes.
The most common cancers in women occur in the breast, cervix, and ovaries; in men, testicular cancer is most common, followed by non-Hodgkin’s lymphoma.
“Our survival rates have flat-lined,” says Eaton, a cancer survivor who, in 1998 at age 22, was diagnosed with leukemia. “We haven’t had a survival improvement for 30 years.”
The cause of cancer may be a mystery, but the reason for the lacklustre change in survival rates is abundantly clear, Eaton says. “Less than 0.1 percent of research in 2006 from eight major agencies was focused on the young-adult issue.”
According to Eaton’s study, in 2006 the Canadian Institutes of Health Research, the National Cancer Institute of Canada, and the Terry Fox Foundation invested a total of $76 million in research studies; only one project, worth $61,061, was focused on young adults with cancer: a proposal to study the preservation of fertility in female cancer survivors.
Joanne Stephen, a research and clinical practitioner with the B.C. Cancer Agency, acknowledges that young adults have remained largely off the radar screens of cancer researchers.
“They’re a neglected population,” she says. “When it comes to doing research and trying to understand the causes and the ways of treating cancer, there’s a focus on the largest populations. That’s where the money goes.”
In 2001, young adults aged 15 to 39 made up just 9.1 percent of the total incidence of cancer in Canada, compared with 89.9 percent of 40- to 69-year-olds. (Children aged 14 and under represented 1.1 percent of the total cancer incidence in 2002, but have also been the subject of many more clinical trials than young adults, with improved survival rates to match.)
In addition to lacking research money, young adults with cancer are often lacking in peer support. “Young adults [with cancer] are really needing to connect, to share information, share support, but they’re spread out all over the place and often will not find each other,” notes Stephen, who, in 2004, helped create The Young and the Breastless conference, out of which came the on-line support group BreastCancerNowWhat.ca.
Although support is growing in urban city centres, young adults in rural areas can find themselves adrift. For example, says Stephen, “If you’re a young person who gets cancer in Nanaimo, it’s very unlikely that there’s anybody that you know who you could talk to.”
Worrall says she hasn’t joined any support groups but she has reached out on-line, documenting her battle with cancer in a blog. As a busy mother of two young children, she says she has little extra time to spend on meeting other sufferers.
“I’ve been encouraged to go [to a B.C. Cancer Agency support group] but I can’t go because it’s between seven and nine, which is bedtime,” she sighs. She recently discovered another lump in her chest, and, at the time this article went to press, was awaiting the results of a biopsy.
If there’s one thing she could change about her cancer journey, she says, it would be to have been taken seriously at first. That experience is all too common, according to Eaton, who says that when asked what they would change, young adults with cancer “unanimously”¦give us two answers to that question: they would change the delay to the time of their diagnosis, and the other major thing is isolation.”
In sharing her story, Worrall hopes to bring greater awareness to cancers among young adults. “If more people speak out, perhaps more money will be directed toward research,” she says. “I am flabbergasted. I don’t understand why more money’s not going into looking at it.”