Hereditary Cancer Risk Is Harder to Detect When Family History Crosses Borders

I grew up believing health was something you could control if you were disciplined enough. In my Chinese immigrant family, my father talked constantly about how fried food and Western fast food were the real culprits of disease. The message was simple: take care of your body correctly and you can avoid getting sick. There was another implication hidden inside this belief: if you become sick, maybe you failed to control what should have been controllable. 

But hereditary cancer risk does not work that way. 

My own experience with hereditary cancer started as an attempt to find something controllable during a very uncontrollable time. During the pandemic era, just as I was leaving graduate school and questioning the future, I decided to take a commercially available DNA test. I wasn’t looking into any specific health concerns at the time. I was just curious and hoping to get more information about my own ancestry. I didn’t expect that the test would flag an elevated cancer risk. 

After getting my results, I sought out genetic counseling which then led to clinical testing and, eventually, a comprehensive cancer panel through my healthcare provider. I learned that I carry an MSH2 mutation associated with Lynch syndrome, an inherited condition that raises the risk of colorectal, prostate, pancreatic and several other cancers. 

Going through this experience made me realize how incomplete my family’s medical story was. Suddenly, cancers that had always seemed like separate tragedies started looking more like a pattern. Family members diagnosed years apart, in different places, under different medical systems, had all been impacted by cancer. 

Hereditary cancer medicine depends heavily on family history. But, for immigrant families like mine, history is not always easy to gather. Relatives live in different countries, diagnoses happen in different languages, and files exist in different healthcare systems. Sometimes details are vague. Sometimes medical records are inaccessible. Some diseases, like cancer, are heavily stigmatized and no one in the family would like to talk about it unless asked explicitly. 

Culture is also a factor. In some immigrant communities, older generations do not want to burden younger family members. Illness is discussed privately, indirectly, or not at all. Language barriers, fragmented medical records, private family communication styles and unequal access to genetic services can all play a role, as well. 

In my own family, pieces of the story existed that I hadn’t been aware of. My mother later told me that an aunt died from colorectal cancer at 33. Another close relative had Lynch syndrome and also was diagnosed with colorectal cancer. My mother herself had undergone treatment for endometrial cancer years earlier, though she hadn’t told me. Nobody had ever assembled the whole picture. 

My father’s perspective on health shows another layer of complexity. Like my father, many men approach health like a personal optimization project or something that is within their control. Eat the right food, exercise more, and work harder. Push through discomfort and do not complain. 

I understand this mindset because I lived it. I thought good habits alone would be enough to keep me healthy. And I assumed discipline would determine most outcomes. But genetic testing forced me to think differently. Yes, good habits, such as exercising and eating healthy, matter for your health. But behavior is not the whole story. 

Genetic information is also a part of the story. But the information is not useful by itself. You still have to do something with it. Now, instead of guessing about risk, I know which cancers I need to watch for and which preventive steps matter for someone with my mutation. That includes regular screenings, closer medical follow-up, and preventive measures. 

Support is also important. After my diagnosis, my geneticist connected me with FORCE (Facing Our Risk of Cancer Empowered) where I found practical information about screenings and prevention and met other people, like me, who are trying to reconstruct a complicated family medical history. 
When I shared my diagnosis with relatives, several of them also decided to get tested. Some learned they, too, carried the mutation. They learned about the screening and prevention that would help them. To me, the real value of hereditary cancer medicine is having better data about your own life. 

There are a lot of conversations these days about technologies like precision medicine, personalized healthcare, and even preimplantation genetic testing that can prevent hereditary conditions from being passed to future generations. There are some other technologies to prevent tragedies for future generations, like in vitro fertilization and preimplantation genetic testing for monogenic disorders. There are other technologies that will serve as life extending technologies such as artificial intelligence and brain computer interface and consciousness uploading to the cloud. But this all assumes patients have complete family histories and clear medical communication across generations. Many immigrant families — and many men — don’t have that. The family history was never passed down. And without a diagnosis, without a genetic counselor, without someone in your corner who knows the system, these technologies remain out of reach. 

We can change that. 

Knowing about my hereditary cancer risk isn’t about control. It is about having information, sharing it honestly with my family members, and using it to take preventive actions. Taking proactive steps, like, for example, joining a clinical research trial will not only help the current generations of my family, but it could also protect future generations. 

Genes and family history are essential health information. But information only works if families can access it, understand it, talk about it, and act on it. 

About the Author: Yuzhe Ni is a Lynch syndrome previvor and a volunteer with FORCE.   

This post originally appeared on Patientworthy.