Breast and Colon Cancer Family Registries
For Families: Cancer Survivors: Community Representatives
One of the most valuable contributions to the Breast and Colon Cancer Family Registries are those from our community representatives. These representatives are cancer survivors who are members on the CFR steering committee and advise CFR researchers on behalf of the participant families. Their dedication to the CFR and other cancer organizations stem from their own experiences.
Gerda's Story
Contributed by the University of Melbourne, Australia
Gerda Evans and members of her family who have also had breast cancer.
From left to right: Maggie (cousin), Philippa (sister), Gerda, and Doone (sister)
|
In 1988 Gerda's sister Doone, then in her 40's, was diagnosed with breast cancer. The only family history that they were aware of at the time was an aunt on their father's side of the family who had been diagnosed with breast cancer at the age of 28. The health professional they spoke to at the time incorrectly discounted a possible genetic cause, by not understanding that family histories on both sides of the family are equally important when considering genetic factors. With two cases of breast cancer now in the family, Gerda and her sisters consulted a breast clinic. Gerda's breast cancer was diagnosed the following year as a result of careful monitoring of changes in her breast. Her sister Philippa and cousin Maggie were diagnosed with breast cancer shortly after. Once their treatment was over and they were well again, the family put their experience behind them and focused on the future. After 10 years of being cancer-free, however, Doone had a recurrence of breast cancer. This was treated, and several years have since passed and she is well. This was a wake-up call for the family, however, and Gerda realized that breast cancer was no longer something she could put to the back of her mind. It was now an important part of her life, and she would be wise to increase her awareness of this illness. Gerda became involved with the Breast Cancer Network Australia and is now the Victorian State Representative. She is now the Community Representative for both the Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer in Australia and the Breast Cancer Family Registry.
Pam's Story
Pam and her husband Harold
|
After her colon cancer diagnosis in 1993 at the age of 47 and the loss of a brother at the age of 46 and an uncle at the age of 48, Pam began to devote her time to volunteer work both as a patient advocate and working with individuals. Her knowledge of the significance of a strong family history of colon cancer led her other brother to have a colonoscopy in his early 40's. He had adenomatous polyps then and has had several removed subsequently, some of which were dysplastic and would have led to cancer without early detection. This strengthened her resolve to work in colorectal cancer advocacy.
In Pam's various activities as an advocate, her hope is to represent the needs and wishes of the patient community in her interactions with the groups and committees on which she serves. She also tries to assist patients, their loved ones, and the general population though her efforts in working with advocacy groups. These advocacy groups with which she serves provide a wide variety of services whose goal is to reduce the burden caused by this disease. Pam's efforts have been rewarded in many ways including the Above and Beyond, The Marshall Kragen Award she received in 2001 for serving the colorectal cancer community with distinction.
Pam was a founding member of the Colon Cancer Alliance (CCA) and served on its board and as a science advisor. She is currently active with the Colorectal Cancer Coalition (CCC) where she serves on the Patient Advisory Board. She is also an advisor to the Marti Nelson Cancer Foundation (MNCF), an agency that works to expand access to cancer therapy drugs prior to their approval by the FDA. Pam continues to serve on the patient advocacy committees of several of the Cancer Clinical Trials Cooperative Groups and is a member of the Patient Advocacy Board (PAB) of the Coalition of Cancer Cooperative Groups. Pam also works with many other groups including the Association of Cancer Online Resources, Inc., the Colorectal Cancer Advisory Group of the American Cancer Society, and the Program for the Assessment of Clinical Cancer Tests Strategy Group at the National Cancer Institute.
In addition to her committee participation, Pam has contributed to the development of publications both for the scientific research community and cancer patients. As a member of a review panel with the American Society of Clinical Oncology (ASCO), Pam assisted in the development of a medical journal article, American Society of Clinical Oncology recommendations on adjuvant chemotherapy for stage II colon cancer, which was published in the Journal of Clinical Oncology in August 2004. Pam also contributed to the production of a treatment guide for metastatic colon cancer and an ASCO Stage II colon cancer patient guide.
Sylvia's Story
Contributed by the Huntsman Cancer Institute, Utah
Sylvia Rickard
|
Sylvia Rickard never meant to become a breast cancer activist. In 1988, living in rural Idaho, she just wanted to know what the lump was in her breast. But getting a diagnosis turned out to be a harder job than she anticipated. "Although I had felt the lump, my husband had felt the lump, even two of my friends had felt the lump, it did not show up in mammograms, and the doctors were unwilling to do a biopsy," she explains. "More disturbing, however, was their attitude. I was told that because I was a young, Hispanic woman, chances were small that I had breast cancer. They told me not to worry; I was just imagining it. But I persisted." Four years later and scheduled for a hysterectomy, she convinced the surgeon to also perform a breast biopsy. The lump turned out to be cancer.
A lumpectomy and radiation removed the tumor, but Rickard says the experience taught her an important lesson: The only way to change how breast cancer patients are treated is for the patients themselves to take the lead. She joined the Idaho Breast Cancer Coalition determined to make a difference. "I found out that a lot of people were upset with their health care. They didn't feel that they were partners in their treatment. They wanted changes. They wanted women to be more a part of what was going on and to be given more information about what was happening." Rickard has worked hard ever since to achieve these goals, serving as an advocate for several organizations, including the National Breast Cancer Coalition, the American Cancer Society, and Redes En Accion, an organization that works to fight cancer among Hispanic populations. "My experience working at the grassroots level has been a real eye opener for me," she reports. "I've learned what can happen when one person acts."
Additional Materials
|
