A Family Affair; Risk Assessment Program Marks 10 Years
Thirty-three-year-old Amy Dysart has more on her mind than most new young moms. Amy is aware that she and her one-year-old daughter Gillian face uncertain odds regarding their risk of some day developing breast cancer. Their risk is greater because Amy's mother, grandmother and great-grandmother died of breast cancer. But Amy has taken steps to control her destiny. She was the first person to join Fox Chase Cancer Center's Margaret Dyson Family Risk Assessment Program in 1991.
"Yes, I'm at a higher risk of getting cancer, but I'm certainly not destined to get it. And I'm certainly not destined to die of it," Dysart told a crowd of people at a Fox Chase ceremony marking the 10th anniversary of the Family Risk Assessment Program.
The Family Risk Assessment Program is a prevention and early detection program specifically for women with a family history of breast and/or ovarian cancer. When the program opened it was the first of its kind in the region and one of the first such programs in the nation. Today, ten years after Fox Chase's Mary B. Daly, M.D., Ph.D., founded the Family Risk Assessment Program, it is helping 3,286 women from 1,798 families. Dysart was the very first woman to enroll in the program. She calls herself "Patient Number One."
"I wear the title proudly," Dysart declared. "I became a member because I had been identified as having a higher risk of getting cancer than the average person. My mother, grandmother and great-grandmother all died of breast cancer-my mother at the age of 42, which is only nine years older than I am today. But I have an advantage that my mother didn't - the Family Risk Assessment Program. "My participation in the Fox Chase program over the years has absolutely changed the way I think about cancer," Dysart remarked. "When I first joined the program, I viewed cancer as a death sentence, because that's all I had ever known about the disease. There was no doubt in my mind that I'd get breast cancer one day...but I've learned that my thinking was wrong.
"Learning the facts and statistics about my risk of cancer has given me a much brighter outlook. I've learned how to do accurate breast self-exams and I know to get annual mammograms. My goal is to stop the disease before it even starts."
The Family Risk Assessment Program started simply with an idea-"the idea that one of the things we needed was an opportunity to help patients and families with increased risk of certain kinds of cancers," Fox Chase president Robert C. Young, MD, recalled during the Family Risk Assessment Program anniversary celebration.
A grant from a federal agency was out of the question because there was no data, no established structure and no demonstrated evidence to support for the approach Dr. Daly hoped to take. As a result, Fox Chase turned to private philanthropy. The Dyson Foundation of New York ultimately provided seed money to launch the program in 1991. That initial three-year grant of $900,000 was a memorial to Margaret M. Dyson, who died in December 1990 of ovarian cancer. She and Charles H. Dyson had established the charitable Foundation in 1957.
On its own demonstrated merits just three years after the program started, the Dyson Family Risk Assessment Program at Fox Chase had earned nearly $1 million in peer-reviewed grant support. Moreover, the program has served as a model for three additional Fox Chase risk-assessment programs for people at high risk of cancer: the Prostate Cancer Risk Assessment Program, the Gastrointestinal Tumor Risk Assessment Program and, new this year, the Familial Melanoma Risk Assessment Program.
"That's one of the greatest examples I've ever seen of the impact philanthropy can have in funding a new idea and creating a new program," Young noted. Barbara Rimer, DrPH, director of the National Cancer Institute's Division of Cancer Control and Population Science sent a congratulatory message to Family Risk Assessment Program staff and participants. She said in part that "the program is especially significant, because it represents the marriage of research and practice, and the intersection of basic, clinical and population sciences." Rimer, the former director of behavioral research at Fox Chase, added that this research "is helping us to better understand how to characterize, prevent, screen for and treat familial cancers. An important contribution has been the lessons about how to provide information to patients, family members and people who are or feel themselves to be at high risk of cancer.
"We will not make progress against cancer without the active engaged collaboration of patients and their scientific partners, partners in a journey along a trail that is not well-mapped," Rimer concluded. "This journey can bring both tears and triumph, but it is the only one that offers hope that this terrible disease will one day be conquered."
For her part, Amy Dysart believes "the most important gift that I've received through my participation is hope."
"Thanks to this Fox Chase program," Dysart explained, "I've met countless women who have courageously fought this disease and won. I've met doctors and nurses and counselors who have valiantly treated women with this disease and cured them. I've met others at high risk who have faced the threat of this disease and lessened it by taking an active role in their own cancer prevention. The strength and the courage of all these people have been such an inspiration to me and have given me a hope that I never had before. And that hope is especially important to me today because a year ago I became a mother myself, to a beautiful baby girl, Gillian. She is named in memory of my mother. When she was born, I made a vow to myself and to my husband and to her that I would do everything I could to arm myself against my risk of cancer, using the knowledge and the support and the practices that I've learned in the Family Risk Assessment Program."
If you would like to know more about Fox Chase Cancer Center's Family Risk Assessment Program, you may call 1-888-FOX CHASE. To enroll in the Family-Risk Assessment Program, women should be at least 18 years old, and have at least one first-degree relative-mother, sister or daughter - who has had either breast or ovarian cancer. Participants have individual education sessions and receive individual counseling from a genetic counselor.
Fox Chase Cancer Center, one of the nation's first comprehensive cancer centers designated by the National Cancer Institute in 1974, conducts basic and clinical research; programs of prevention, detection and treatment of cancer; and community outreach. For more information about Fox Chase activities, visit the Center's web site at www.fccc.edu or call 1-888-FOX CHASE.
Fox Chase Cancer Center, part of Temple University Health System, is one of the leading cancer research and treatment centers in the United States. Founded in 1904 in Philadelphia as one of the nation’s first cancer hospitals, Fox Chase also was among the first institutions to receive the National Cancer Institute’s prestigious comprehensive cancer center designation in 1974. Fox Chase researchers have won the highest awards in their fields, including two Nobel Prizes. Fox Chase physicians are routinely recognized in national rankings, and the Center’s nursing program has achieved Magnet status for excellence three consecutive times. Fox Chase conducts a broad array of nationally competitive basic, translational, and clinical research and oversees programs in cancer prevention, detection, survivorship, and community outreach. For more information, call 1-888-FOX-CHASE (1-888-369-2427).