Living With Lynch Syndrome and its Uncertainty


After being diagnosed with Lynch syndrome, uncertainty has become a constant companion of mine.

Georgia Hurst talks about how uncertainty has become a constant companion after being diagnosed with Lynch syndrome, a type of hereditary cancer syndrome.

We all live with uncertainty, and in turn, this can make life rather daunting; however, being diagnosed with a hereditary cancer syndrome, such as Lynch syndrome, brings on a unique set of challenges. Ever since I learned of my Lynch syndrome diagnosis, this particular uncertainty has become a constant companion. The knowledge that I have an increased risk of developing certain cancers added a layer of complexity to my life. Life profoundly changes after a Lynch syndrome diagnosis — it's no longer just about managing the present but anticipating and preparing for the possibility of a future with cancer.

Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer, is the most common hereditary cancer syndrome that increases the risk of various cancers. One of the significant aspects of Lynch syndrome is its hereditary nature. Individuals with Lynch syndrome have a 50% chance of passing the condition on to their children. This genetic component adds another layer of complexity to the uncertainty, as it involves not only personal health but also the well-being of our children. For me, this has been the most stressful part of living with Lynch syndrome, knowing my son could have the mutation, too.

I recognize the importance of proactive health care measures and have learned that regular screenings and surveillance become crucial elements in managing the uncertainty of Lynch syndrome. I could also say that I am significantly reducing my chances of developing colorectal cancer by adopting a daily aspirin regimen, coupled with my vigilant medical surveillance. These routine check-ups serve as a means to detect any potential issues early on, offering a sense of control and an occasional respite from the uncertainty in an otherwise unpredictable situation.

Living with Lynch syndrome also means making difficult decisions about preventive measures. My decision to undergo the recommended prophylactic surgeries to prevent specific cancers has come at a considerable cost while profoundly changing my life and affecting my overall well-being.

Initially, I felt alone and isolated after my diagnosis, but I have found a few support networks have played a pivotal role in my physical and emotional healing. Connecting with similar experiences provides me with a sense of community and understanding. Those that I have become close with who are afflicted with Lynch syndrome and BRCA have become a source of strength, turning uncertainty into a shared challenge that we face together.

Living with uncertainty is a universal experience, but Lynch syndrome adds a unique layer. However, I have learned to face the unknown with fearlessness and determination. It explores the highs and lows, the triumphs and challenges, and ultimately, the strength that arises from embracing uncertainty and turning it into a catalyst for positive changes.

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