The Secret to Success: Eliciting a Thorough Cancer Family History
Ellen T. Matloff, MS, CGC is a certified genetic counselor and the president and CEO of My Gene Counsel, a company that provides updating, scalable digital genetic counseling for consumers and clinicians. Matloff founded the Yale Cancer Genetic Counseling program, served as its director and a faculty member at Yale School of Medicine for 18 years, and was a lead plaintiff in the SCOTUS BRCA gene patent case of 2013. She works closely with patient advocates in the areas of genetic counseling and testing, and direct-to-consumer (DTC) genetic testing, and is an expert in return of genetic test results and interpretation of genetic testing. Matloff serves as the Forbes.com contributor on genetic counseling, genetic testing, and digital health.
A thorough personal and family history is the key to determining which patients are candidates for genetic counseling and testing.
Ellen T. Matloff, MS, CGC
Cancer geneticists from around the globe will agree on one thing: A thorough personal and family history is the key to determining which patients are candidates for genetic counseling and testing. This information can unlock the secret of why a particular family has been afflicted with many cancer diagnoses, often at young ages. Having this information may make it possible for many other family members to finally know their own cancer risks, have the cancer surveillance they need, and reduce their risks of ever developing the cancers seen in the family. There is no greater gift to give a family.
Oncology nurses are perfectly poised to elicit a thorough cancer family history. They know their patients well, see them for multiple visits over an extended period of time, and often hear about their family members and fears that other loved ones will someday develop cancer.
These are the secrets to taking a thorough family history:
1) Collect information on 4 generations of relatives
- This includes at least brothers, sisters, parents, children, grandparents, aunts, uncles, and cousins. If the patient has information on more distantly related relatives, great! Take that information as well.
- Document how these relatives are related to your patient and each other. For example, is this a maternal or paternal aunt? A full sibling or half-sibling through the father? A pedigree is the easiest and most efficient way to capture this sometimes complicated information.
- For individuals who have not had cancer, document their current ages or ages/causes of death. In a family history of ovarian cancer, document whether unaffected family members have ever had their ovaries removed. In a family history of colon cancer, document colonoscopy findings (or lack thereof) on unaffected family members.
The family medical pedigree is one of the most valuable gifts a parent can leave for children and grandchildren.
2) Elicit information from the maternal and paternal sides of the family
Far too many patients (and providers) still believe that you can only inherit breast and ovarian cancer risk from your mother, or prostate cancer risk from your father. Both men and women can carry mutations in these genes, and we can all pass these mutations on to both sons and daughters.
3) Gather information about each person with cancer
Ask your patient to research for each family member with cancer:
- The primary site of the cancer
- Age of diagnosis
- Current age or age at death
- Pathology, when possible. This is becoming more and more important because different tumor pathology can lead to different genetic syndromes and risks. For example, lobular breast cancer can be seen in families with gastric cancer due to a CDH1 mutation. Triple-negative breast cancers indicate a higher risk of a BRCA mutation.
- Whether the person has had genetic testing. If yes, obtain a copy of those test results.
4) Inquire about related cancers and findings in the family
For example, in a family with multiple cases of breast cancer, be sure to ask if anyone has had ovarian, pancreatic, thyroid, or gastric cancer. In a family with a history of colon cancer, ask if anyone has had multiple polyposis, ovarian or uterine cancer, or sebaceous adenomas or carcinomas. Each of these findings can lead to a different genetic syndrome.
What about the patient who says she doesn’t know her family history? Advise the patient to do some research:
- Contact a family elder (eg, grandparent, great-aunt, or great-uncle) for information.
- Reach out to the cousins you haven’t spoken to in 20 years to get an update on their cancer history.
- Track down estranged relatives or relatives you’ve never met using Facebook and other social networking tools.
- Nail down a diagnosis by obtaining death certificates, which are public record.
- Request pathology reports on your own diagnosis, or on other family members with their signed permission (or that of next of kin).
More often than not, this research will yield a more useful family history.
This family medical pedigree is one of the most valuable gifts a parent can leave for children and grandchildren. A copy of this pedigree should go in a safe deposit box with other essential family documents and is an investment in the health of future generations.
The oncology nurse can make a huge difference by encouraging patients to do the research necessary to pull this family history together.
Ellen T. Matloff, MS, CGC, is a certified genetic counselor and director of Cancer Genetic Counseling at Yale Cancer Center, New Haven, Connecticut.