Every time you see a new doctor, it comes up. What is your family’s medical history? Unless you are adopted, you probably know at least a little about the medical history of your nearest relatives, but not much about your more distant ancestors.
You may not know much about the history of cancer in your family because it used to be that cancer, especially women’s cancers, were not talked about. So when the doctor asks about family history, you remember that your mother had two sisters who died in their 40s, but no one ever told you why. Could their cause of death be relevant to you? Perhaps.
Mutations in the BRCA 1 and 2 genes are two mutations proven to be linked to breast cancer, but family patterns of breast cancer even when the mutations are not present suggest that family history is an important part of risk assessment for breast cancer.
If details about your medical history are missing, can you find out now? Family conversations, public records, and DNA testing might give you some clues.
Talk to your relatives
The easiest place to start is with your living relatives. Did your aunts have any children who could talk to you? Sometimes in-laws or cousins are more willing to talk than the closest family members. My husband’s mother would never talk about her father’s death. She had been orphaned at a young age and found it traumatic to discuss her parents. She was a child when he died, so maybe she didn’t know. Conversations with an uncle by marriage and some cousins helped my husband fill in gaps about what might have happened.
Let your relatives know that you are interested in your family’s medical history. Be willing to share what you know at family reunions and in holiday letters. You may be surprised at what you might learn.
Search public records
Someone may tell you that both your aunts had breast cancer even though it was hushed up at the time. But sometimes time and gossip have lessened the accuracy of family memories. In that case, you might want to check public records. My husband had to go to the county records office to get more information about his grandfather. This morning I was able to use an online data base to find the same information. I live in one of many states that now has death certificates online. Using the database, I found death certificates for two of my great-grandparents on my mother’s side. Death certificates always have a line for “cause of death,” and two of my great-grandparents have apoplexy listed as their cause of death.
My friend Nancy Poling, who is interested in genealogy, has worked with old records and cautions that terminology has changed and may be confusing. She has been learning more about her husband’s relative Elias. Poling says, “In many cases we cannot extrapolate anything from ‘cause of death’. Lifestyles have changed or vary. One of Elias’s sons from that first marriage died of a heart attack. What was his diet like? He worked as a spinner in a cotton mill. Was there something in the environment?” So remember that a relative’s disease might be from factors that wouldn’t affect you.
I know that apoplexy is an old-fashioned word for stroke, but keeping Nancy’s advice in mind, I looked up the historical meaning of apoplexy and learned that although it applies to strokes, especially cerebral hemorrhages, it also was used for any sort of sudden event that led to unconsciousness. I also know that these great-grandparents’ daughter had a stroke in her early 60s and that her daughter, my mother, died of a cerebral hemorrhage at age 91. So with a three-generation history of strokes behind me, I will be especially conscious of stroke awareness and prevention.
There are limitations to what you can learn from death certificates. Often death certificates include not just the immediate cause of death, but diseases that the person had earlier. Years ago my Aunt Pearl told me that she had breast cancer, but not how old she was when she was diagnosed. She lived to be 100 years old and died last year. I got curious about whether her death certificate would include any mention of her cancer. My cousin sent me a copy of the certificate, which did not mention cancer, probably because she had been healthy for so many years after her cancer, but perhaps the doctor didn’t even know about it.
Consider learning more from DNA
You may have seen the advertisements for learning about your ancestors through a DNA test. Most of them tell only your ethnic and geographical heritage, which probably would not be very helpful from a medical history point of view. One of the best-known is available through AncestryDNA. Judy G. Russell, a genealogy blogger, suggests that if your main interest is medical information, you should consider using 23 and me. This company offers a more extensive DNA test that can tell if you are a carrier for 35 inherited diseases, such as cystic fibrosis. These tests range in price from $99 to $199, but the companies do have sales from time to time.
Knowing where your family came from may help you because some illnesses are more concentrated in an ethnic group or region. For example, sickle cell anemia is mainly prevalent in people of African heritage. The BRCA 1 and 2 mutations are more frequent in Ashkenazi Jews and people from Iceland, and a DNA test could tell you if you have a genetic background from those groups. Of course, that still wouldn’t tell you if you have the BRCA mutation, but it might help you decide whether you want to have the test done to confirm its presence.
If you are adopted, this type of test might be your only way to find clues about your medical history. My friend Mary Smith has a dramatic story about how a DNA test helped her. She says, “When you are the product of a closed adoption, there’s always an awkward moment when the nurse/doctor asks you about family medical history and you say, ‘I don’t have any.’ Not ever knowing this information was really the only aspect of my adoption that bothered me.”
Smith’s DNA test showed that she has a mostly Hispanic genetic background, so her doctor makes sure to keep a close watch on her blood pressure and other health issues that are more prominent in the Hispanic community. Smith also did a search to see if she could find her birth mother, and she did.
“I took about two weeks to decide that I would contact her to ask about family history,” Smith says. “I did, she responded, and that’s when I found out about her breast cancer.”
Mary Smith’s experience is not typical, but most of the commercially available DNA kits have an option to let you contact people who share your ancestors. Conversations with these distant relatives might help you fill in some blanks in your medical history.
Even if many folks in your family have a particular health problem, it does not mean that you are doomed to inherit it. But knowing about family health problems can help you and your doctor intervene quickly if you do develop the problem. It can also spur you to take action when possible to prevent the illness.
For Further Reading:
Phyllis Johnson is an inflammatory breast cancer survivor who serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. She stays current on cancer information through attendance at conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. A retired teacher, she has been writing about cancer issues at HealthCentral since 2007.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.