Safeguard Your Family Tree by Creating a Family Medical History
by Catherine Credeur, GSW, OSW-C
Cancer survivors often wonder whether their family members will also experience cancer. I have asked this question myself as a member of a family that has a long cancer history. I also hear this concern from survivors in my role as an oncology social worker. The good news is there are things you can do as a survivor to protect your family.
Educating your family members about your shared medical history is one way of defending them. A family medical history can help your descendants make important lifestyle changes and proactively utilize early detection procedures. These actions can help future generations avoid the challenges of cancer.
Call It What It Is
The first step in creating a family medical history is to be honest about naming the cancer. Most people did not openly discuss “private parts” when my paternal grandmother had uterine cancer in the 1950s. The word “cancer” was also taboo. I was just told that my grandmother had “female problems.”
It took the oldest granddaughter’s diagnosis of breast cancer for our family to openly discuss our medical history. The correct information about our grandmother’s medical history and our cousin’s illness prepared the rest of us to get specific medical advice. We were able to learn about our genetic risks, prevention behaviors, and early detection procedures.
If there were lifestyle factors that influenced your cancer risk, sharing that information openly teaches your family to make better decisions. My paternal grandfather didn’t know that his childhood sunburns could have lasting effects. He had frequent excisions of skin cancers in his late adulthood. My grandfather made sure that we understood his cancer resulted from excessive sun exposure. We were not allowed to play outside unless we wore a hat or sunscreen. Our grandfather’s teaching is the primary reason none of his grandchildren have experienced skin cancer.
The second step in creating a family cancer history is to gather information. Things that may not seem relevant now could be helpful as the role of genetics in cancer is clearer. Name your cancer by both its medical and lay terms (for example, non-small cell carcinoma of the lung and lung cancer). List your age at diagnosis, occupational and environmental exposures, and other risk factors you know. Ask your oncologist if your cancer has any known genetic links. Explain whether your cancer was identified by certain symptoms or through a routine screening test.
If there were lifestyle factors that influenced your cancer risk, sharing that information openly teaches your family to make better decisions.
If your oncologist believes that your cancer could have a genetic link, your family may benefit from genetic counseling. Genetic counseling involves an interview with a trained specialist to focus on familial disease patterns and includes genetic testing. The results of a genetic counseling assessment should be shared with your descendants. Your family can use this information in consultation with physicians to personalize their medical care. Options range from “watch more vigilantly and wait” to more aggressive prophylactic treatments. Genetic counseling helps tailor treatment discussions before cancer happens. Your cancer history could prevent your descendants from experiencing this challenge.
Create a family tree that includes this information for you and for any close relative known to have had cancer. Seeing certain cancers repeated in the extended family or first-degree relationships (parents, siblings, and children) is an indicator of genetic risk. Although we can’t control our genes, knowing family patterns may spur your descendants to be more vigilant about preventive care and early detection.
The final step in presenting a family medical history is to celebrate your cancer survivorship. This gives future gen- erations the hope that cancer is a treatable illness.
A survivor at the cancer treatment center where I work recently asked me for prevention and screening brochures. She planned to include the brochures in her family’s reunion welcome packets. The acknowledgement of the great- grandmother’s twenty-year anniversary as a cancer survivor was a major reunion event. The matriarch used her “anniversary party” to prepare her descendants to take charge of their health.
This great-grandmother is a good example of the role survivors can play in using their cancer experiences for the good of their families. What could be a shameful secret becomes a story that helps your loved ones survive. A family medical history gives your family a powerful tool to minimize their risks.
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Catherine Credeur is a certified oncology social worker at Louisiana State University Health Sciences Center–Shreveport in Shreveport, LA.
This article was originally published in Coping® with Cancer magazine, May/June 2011.