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Advocates spearhead enrollment for cancer study
By Janice Youngwith
Fifty years ago, research funded by the American Cancer Society showed the link between cigarette smoking and lung cancer. Discovering that link took thousands of study participants from across the country and an intensive organizational effort of research scientists and volunteers.
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| Ovarian cancer survivor Jenny Gapinski enjoys a magical time in the Magic Kingdom with her husband and daughter. |
How to join CPS-3 study
CPS-3 enrollment will take place at selected American Cancer Society Relay For Life events across the nation this spring and will include a brief survey, signed informed consent, providing a waist measurement and small blood sample.
In addition to the ACS Relay For Life of GLMV that occurred in Mundelein in late May, those interested in joining the landmark study may register from 5-9 p.m. Friday, June 13, at the ACS Relay For Life of North Naperville/Lisle at Naper Settlement, 523 W. Webster St., Naperville.
In Illinois, study enrollment also is being conducted at events in Kankakee, Stephenson, Sangamon, Clinton, Knox and Champaign counties.
Visit www.cancer.org/cps3 or call (800) 604-5888 for information.
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Two northwest suburban volunteers, Jenny Gapinski and Kim Rohan, are at the helm of local efforts to enroll participants in the American Cancer Society's (ACS) next landmark study - Cancer Prevention Study 3 (CPS-3).
"Researchers will take a close look at lifestyle, environmental issues and genetic factors which may cause or prevent cancer and to ultimately eliminate cancer as a major health problem for this and future generations," says Gapinski, 41, a Lake Villa resident, speech pathologist and 16-year ovarian cancer survivor.
Gapinski, who organized initial CPS-3 enrollment efforts in May at the Relay For life of GLMV (Green Oaks-Mundelein-Libertyville-Vernon Hills) - one of eight statewide enrollment sites - says the ACS first began conducting long-term prospective follow up studies in the 1950s, with results playing a major role in understanding cancer prevention.
With an ultimate goal of enrolling 500,000 adults from various racial and ethnic backgrounds across the country, study participation is open to anyone ages 30-65 with no personal cancer history. The long-term CPS-3 study will query participants with periodic questionnaires in an effort to help researchers better understand new and emerging hypotheses related to cancer risk, cause and prevention.
"These studies and their findings have significantly contributed to tobacco-related research and to the understanding of obesity, diet, physical activity, hormone use, air pollution and various other exposures in relations to cancer and other diseases," says Rohan, an Edward Hospital nurse practitioner with more than 25 years experience in caring for oncology patients. Rohan will coordinate CPS-3 study enrollment at the June 13 Relay For Life of North Naperville/Lisle event.
The first Cancer Prevention Study (CPS-1) began in 1959 and included approximately one million men and women recruited by 68,000 volunteers in 25 states and was designed to address a wide range of exposures in addition to tobacco use. In 1982, researchers began CPS-II by recruiting 1.2 million subjects in all 50 states to examine environmental and lifestyle factors that could increase or decrease cancer risk.
A cohort nutrition study also took root, helping researchers gain a better understanding of how diet affects cancer risk.
Rohan said since inception, studies have:
• Established the link between smoking and lung cancer
• Shown the significant impact of being overweight or obese on risk for cancer occurrence or death
• Demonstrated the impact of hormones, physical activity, diet, various medications and vitamins on cancer risk
• Shown the impact of air pollution on heart and lung conditions and motivated the Environmental Protection Agency to propose more stringent limits on particulate air pollution
• Shown the link between aspirin use and reduced colon cancer risk
• Demonstrated a link between postmenopausal hormone replacement therapy and various gynecologic cancers like breast and ovarian cancer
• Supported a link between diabetes and cancers of the pancreas and colon
• Contributed to understanding how physical activity and lower risk for various cancers including breast, colon, and aggressive prostate cancer
"Enrollment in the CPS-3 study gives Relay For Life participants a firsthand look at research in action and an amazing chance to see their fundraising dollars at work in the fight against cancer," notes Rohan, who first learned of the study in 2006 during a ACS Celebration on The Hill event and whose younger sister, Katherine, was diagnosed with a brain tumor just last year.
"I've always been involved in the Relay For Life, but this year's Relay and the CPS-3 research study definitely have a huge personal significance given my sister's survivorship."
Volunteer organizer counts her blessings
As a 16-year cancer survivor, Gapinski says she is among the lucky ones. "I was diagnosed with stage 1 ovarian cancer as a 24-year-old newlywed," she recalls. "Nerve pain was what sent me to the doctor and I later learned it was tumor pressure causing that pain - a lucky thing for me since this cancer is known as a silent killer due to lack of pain and an often later diagnosis."
Gapinski says her initial shock faded into determination as complex testing and treatment ensued. "I was initially treated for cysts, five months later proceeded with the recommended surgery for endometriosis and later that same day awoke to see my doctor standing at bedside telling me I had cancer," she recalls. "It was surreal."
Tumor resection surgery, the discovery and removal of additional precancerous polyps and removal of surrounding tissues and organs including the appendix to prevent spread followed.
"Because my husband, Karl, and I were so young and desperately wanted a family, my doctors gave me one year to get pregnant and have a baby before additional surgery to remove the uterus and ovaries was scheduled."
High doses of infertility drugs and resulting blood levels were closely monitored through five in vitro fertilization cycles and three subsequent miscarriages. "It seems there were constant medical problems - drainage from cysts, medications - everything which required careful monitoring and frequent trips back and forth to my specialists in Madison, Wisconsin," she reports.
"The doctors treated my mind as well as physical aspects, simply by giving me the time I needed before calling it quits."
Every time pain recurred, Gapinski feared the worst.
"I had so many surgeries, including six laparoscopies to remove scar tissue," she says. "At age 29 I had a complete hysterectomy to remove the uterus, right ovary and cervix. The left ovary was left for hormone production and reducing the risk of breast cancer."
A year later, doctors removed that ovary, too, when left pain recurred.
"Once cancer is there, it never really leaves," explains Gapinski, who continues to report phantom pains where her ovaries once were. "Any twinge means thoughts of recurrence."
Fifteen years ago, she became involved in an infertility support group and bonded with women who shared similar infertility stories. One in particular, who has since become a close personal friend, shared more than the infertility experience, she also had faced cancer.
Both soon realized that while dealing with infertility issues, they had failed to think about the cancer diagnosis.
Gapinski joined the American Cancer Society Relay For Life event, walking the initial survivors lap in Libertyville eight years ago. "Every year since that time has been an opportunity to reaffirm life and survivorship, share vision and strength with others, and remember those lost to cancer."
Gapinski says she looks forward each year to sharing the survivor lap with friends and family, including her husband and the couple's 9-year-old daughter, Stephanie.
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