What I Wish I Was Told About Lynch Syndrome


A Lynch syndrome diagnosis shook my world. Here is what I wish I was told from the get-go.

cartoon image of blogger and Lynch syndrome survivor/advocate, Georgia Hurst

When the news of having Lynch syndrome hit me, it completely shook my world. One moment I was living my best life, and the next I faced a reality filled with uncertainty and fear.

Looking back, there are some things I wish someone told me.

The Importance of Genetic Counseling

Genetic counselors play a role in navigating Lynch syndrome. They not only helped me comprehend my diagnosis, the associated risks and the available options for managing my health, but also provided emotional support and guidance on communicating this information to my loved ones. If you are in this situation, don't hesitate to contact a genetic counselor — they are there to assist you through this journey. They can also discuss the ethical, financial and life insurance issues surrounding genetic testing that many people do not know about before undergoing genetic testing.

Coping With the Initial Shock

The moment when my genetic counselor uttered those words, "You've tested positive for Lynch syndrome," shook me to my core and shifted my emotional tectonic plates. It felt like a blow, leaving me feeling numb, overwhelmed and adrift. I was struggling to make sense of it all.

I eventually learned that it’s normal to have such a reaction, and that it's essential to allow yourself to experience whatever emotions arise — fear, anger or confusion — it's all part of the process. With time, these strong emotions will become easier to handle as you navigate this experience.

Survivor's Guilt

The unexpected wave of survivor guilt hit me hard after my diagnosis. Thoughts of my brother's battle with colorectal cancer and my other brother currently fighting the same disease weighed heavily on me. Learning about my predisposition to cancer while witnessing their struggles took a toll on me emotionally. It felt unjust, and grappling with survivor guilt was a challenge. Acknowledging these feelings and seeking guidance from health professionals were positive, helpful steps for me.

Seeking Support During the Early Stages

I felt isolated and vulnerable. Connecting with a community of individuals who could relate to my situation made a difference in my journey. I also made a concerted effort to research other genetic cancer syndromes and began to draw parallels between them. Engaging with people facing similar genetic challenges, particularly within the BRCA community, provided invaluable support. Building connections with others who share your journey can offer solace and practical advice in times of need. I needed to understand that I wasn't alone on this journey.

Undergoing Prophylactic Surgeries Is a Choice With Lasting Effects

Due to my mutation and family medical history, my healthcare team suggested I consider the risk-reducing surgeries for my specific mutation — a bilateral salpingo-oophorectomy (removal of both ovaries and fallopian tubes) and hysterectomy (removal of the uterus). Making these decisions was profoundly personal and complex. It wasn't solely about reducing my cancer risks, but about considering the emotional and physical impacts, making it one of the most challenging choices I've ever had to make.

Through discussions with my team and seeking advice from others in similar situations, I made an informed decision with which I have since come to peace. However, opting for an oophorectomy before naturally reaching menopause does come with long-term health consequences — something no one discussed with me before taking prophylactic measures. Knowing what I know now, I may have delayed my surgeries or possibly opted for surveillance.

Informing Family Members of Lynch Syndrome

Lynch syndrome is hereditary; a parent with it has a 50/50 chance of passing it on to each of their children. Therefore, your relatives may be at risk, too. Upon receiving my diagnosis, my genetic counselor provided me with a letter to share with my relatives so they could undergo genetic testing and take measures if necessary. I realized that these conversations are crucial — this is vital information that may save their lives.

Getting involved in Advocacy Can Be Empowering

After receiving my diagnosis, I began to engage in advocacy work. It provided me with a sense of purpose and agency during a time when I often felt helpless. Sharing my journey, raising awareness and connecting with individuals who were going through struggles all played a crucial role in helping me come to terms with my diagnosis.

The Role of Epigenetics

The significance of epigenetics (the effect that outside factors and chemicals have on gene functions) cannot be overstated. While we may not control our predispositions, we can influence how our genes manifest themselves through our lifestyle choices. The management of Lynch syndrome relies heavily on factors such as diet, exercise and effective coping strategies. Embracing a balanced diet, staying physically active and incorporating stress-reducing practices like exercise and mindfulness have affected my overall health.

Knowledge Is Truly Powerful When It Is Actionable

When I first received my diagnosis, the abundance of information was overwhelming. However, educating myself about Lynch syndrome empowered me to make decisions regarding my health journey. Delving into literature and assembling the possible healthcare team within my means proved invaluable steps forward for me. By undergoing meticulous, frequent colonoscopies, considering aspirin as part of chemoprevention measures and taking proactive steps toward maintaining good health, I have regained control over my well-being while fostering confidence. These measures, in turn, have had an overarching effect and have altered my perception of living with Lynch syndrome.

The Worst Part of Having Lynch for Me

The most challenging part of dealing with Lynch syndrome for me is the uncertainty surrounding my son's health. The fear of him possibly inheriting the mutation gives me anxiety, especially since he hasn't been tested yet. If it were solely about me, I might have approached things differently — I may have postponed my prophylactic surgeries until after achieving menopause.

Medical Advancements

Since my diagnosis, the landscape of Lynch syndrome has significantly evolved over the past decade, with advancements in genetic testing, universal screening and predictive models improving early detection. Clinical trials for preventive and therapeutic vaccines are promising, and immunotherapy has shown tremendous promise in treating Lynch syndrome-related cancers. Enhanced understanding of Lynch syndrome-related gene mutations and cancer pathways has facilitated personalized treatments and better surveillance protocols.

Despite the challenges of Lynch syndrome, there are also moments of gratitude and strength that help me navigate this journey with resilience and hope. I didn’t have to face Lynch syndrome alone after realizing that support is always available. That support system, as well as staying ahead on check-ups and focusing on my wellbeing, guided my path after being diagnosed. As such, I was able to seek the best care possible and approach the journey with bravery empathy and, above all, grace and kindness toward myself. I hope that others with Lynch syndrome can find that too.

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