By guest bloggers:
Kari Mendelsohn-Victor, MPH
Clinical Research Project Manager, University of Michigan, School of Nursing
Deb Duquette, MS, CGC
Genomics Coordinator for Michigan Department of Community Health
Maria Katapodi, PhD, RN, FAAN
Associate Professor, University of Michigan, School of Nursing
It’s 1973. A woman, Nancy, is diagnosed with breast cancer at age 36. She has no family history of breast cancer, although she has few female relatives: just her mom, her mom’s sister who died young of other causes, and a two-year-old daughter. Her father died of pancreatic cancer five years earlier.
Flash forward to the year 2000. While Nancy has been cancer-free for nearly 30 years after a mastectomy, she is now diagnosed with ovarian cancer. Nancy considers genetic testing, but given the lack of family history, she decides against it.
Nancy’s daughter Kari, knowing she has an increased risk for cancer, spoke with her doctor who recommended that she begin screening for ovarian cancer at age 30 and begin screening for breast cancer with mammograms at age 35.
Jump to 2007. Kari is 35 and has her first mammogram. It doesn’t show breast cancer. But only a few months later, she wakes up one morning to find concerning changes in her breast: the skin is pink and warm, her nipple is inverted, and there is a large lump the size of a lemon. Kari is diagnosed with breast cancer and a mutation (change) in her BRCA1 gene.
This is a true story—Kari Mendelsohn-Victor’s own family history. This story shows key issues about the role of family ties in breast cancer monitoring and risk assessment. It raises important questions about health communication in families with histories of breast or ovarian cancer. Can family ties help improve breast cancer screening and monitoring? Do family members share important health information with each other? Do family members encourage each other to be screened for breast cancer as recommended?
To answer these questions, a team from the University of Michigan School of Nursing and the Michigan Department of Community Health, including guest bloggers Ms. Mendelsohn-Victor, Ms. Duquette, and Dr. Katapodi, studied young breast cancer survivors (women diagnosed with breast cancer when they were younger than 45 years old). Because these women were diagnosed at a young age, they have a higher risk of getting another cancer. Because families share many things, including genes, health behaviors, and environments, their relatives are also at higher risk. Women with a higher risk of getting breast cancer should talk to their doctors. Their doctors may recommend screening at an earlier age and more often than other women or consider medicines or surgeries that can lower breast cancer risk. Their doctors may refer them to genetic counseling and, possibly genetic testing, to find out if they carry a mutation associated with inherited cancers. Genetic counseling and testing help determine the best way to manage a woman’s breast cancer risk.
With the help of the Michigan Cancer Surveillance Program (a branch of the Michigan Department of Community Health), our team invited women in Michigan who got breast cancer when they were younger than 45 years old to participate in a new study. We sent them a survey to learn about their breast cancer screening practices and use of cancer genetic services, family history of cancer, and family communication and support. We also asked these young breast cancer survivors to invite their first- and second-degree female relatives who did not have cancer to join the study.
In addition to the survey, we sent brochures about breast cancer screening, low-cost screening, and cancer genetic services to each family member who agreed to participate in the study. To half of these families, we also sent a letter to each family member participating in the study personalized with answers from their survey and a booklet on how family communication and support may encourage other family members to get screened for breast cancer as recommended.
Now nine months later, we are collecting follow-up surveys so we can find out if getting the brochures increased the use of breast cancer screening tests and cancer genetic services, as well as to see if getting the personalized letter and booklet increased this even more. One participant has already called to say that the personalized letter and booklet had helped her talk about cancer genetic services with her doctor. She ended up testing negative.
We’d like to know your thoughts. Do you think improving family communication can also improve breast cancer screening and monitoring in families with a history of breast cancer?