A race against time, a lack of funds Ellie Tesher Second of two parts SANDI PNIAUSKAS, diagnosed at 47 with ovarian cancer in 1999, is a patient advocate who knows time isn't on her side. She visits ovarian cancer patients in her Oshawa area, helped create a local gynecologic cancer support group within Hearth Place Cancer Centre, and keeps contact with an international patient network. She helped lobby provincial politicians for an increase in specialists; four more positions were promised. She took a course for health professionals at Durham College, though she had no prior health background, and ended up teaching nurses from a patient's perspective. Says Pam West, nurse practitioner and Durham teacher who's encouraged her to teach an advanced oncology class, "Sandi put a different face on the illness." That's precisely what's missing in the field of ovarian cancer. Science is promising, fundraising organizations are gaining some momentum. But for women with the disease, nothing has changed since Pniauskas' observation a year ago: "After all the attention, the surgery and the repeated cycle of chemotherapy treatments and maybe radiation, too, a woman is left on her own. It's like falling off a precipice, terrifying." It's little wonder Pniauskas and other survivors remain frustrated and fearful about grim statistics that say 75 per cent of them will die, on average, within 2 1/2 years of diagnosis. Pniauskas calls for public and medical awareness including a national program to teach oncology nurses about patient needs, alerting family doctors to earlier detection, and a seminar for survivors at gynecologic oncologists' annual meetings, such as those she attends in the United States. But most important to her and everyone involved, professionals and patients alike, is a designated ovarian cancer research foundation with ongoing funding. Says Dr. Barry Rosen, head of gynecologic oncology at the University of Toronto, "We have excellent researchers here (in Canada) but in a highly competitive marketplace, they're drawn to where the funding is." A recent U.S. study on 100 women came up with a potential breakthrough for an urgently needed screening test that would catch ovarian cancer early, a time frame when 90 per cent of women can be cured. Far bigger trials are needed of this predictive test, which looks at proteins in blood, but there is not one in Canada. Funds for specific research now compete with breast, prostate and other significant cancers. These have their own profile and supporters. The death rate for women with ovarian cancer, however, is much higher by comparison. There's little hope unless science finds preventive methods, screening tools, improved treatments. The time is ripe for collaboration between researchers and clinicians who treat patients. But they desperately need the support of politicians and funding agencies. In 1998, then-MP Patrick Boyer moved Ontario to donate $2 million, half to establish a chair in ovarian cancer research at the University of Ottawa in the name of his late wife Corinne Boyer, and half for national programs. At a May conference, scientist and Ottawa chair, Barbara Vanderhyden, and Dr. Joan Murphy, head of gynecologic oncology at the University Health Network, are bringing together research and medical specialists in the field. Funding agencies — the National Cancer Institute of Canada and the Canadian Institute of Health Research — as well as federal and provincial health ministers must heed their research priorities if women are to have a chance against this killer. Advocacy organizations also need resources. The National Ovarian Cancer Association (NOCA) supports a network of tissue banks for researchers, but they are only useful if enough people are drawn to studies. There's greater clout in numbers and NOCA recently started joint programs with the activist Ovarian Cancer Alliance based in British Columbia. Both groups need corporations and charitable foundations to support their fight. Says NOCA's Elisabeth Ross, "We still have a long way to go to get what's needed." She is urging pharmaceutical companies to speed up delivery of drugs in development for ovarian cancer patients. Ottawa's Vanderhyden is understandably enthused about the turning point in scientific developments. At her coming meeting, she intends to work out exactly what monies are needed for various targets in order to move forward. "We have the ideas. We need experiments, new clinical trials, something patients can benefit from." She's counting on Health Minister Anne McLellan to pay attention to the new possibilities. So are Canadian women and their families. I believe a national lobby boosted by the medical specialists involved as exists in the U.S. is essential now. Contact your MP and MPP to let them know your support. For information, NOCA's web site is http://www.ovariancanada.org, or phone 1-877-413-7970. March or April, 2002 -------------------------------------------------------------------------------- Ellie Tesher's column appears in The Star Tuesdays and Thursdays. She can be reached at etesher@thestar.ca. Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.