Georgia Hurst is a fierce patient advocate for those with Lynch syndrome. Her advocacy work has afforded her opportunities to write for medical journals, various websites, books and genetic testing companies, and collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter. 

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.

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.

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.

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.

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 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 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.

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

What I Wish I Was Told About Lynch Syndrome

The past three years have presented me with some formidable challenges. Within a year, I lost my beloved dog, bid farewell to my son as he ventured off to college, and lost my husband to COPD. Adding to the weight of grief, I also live with Lynch syndrome, the most common hereditary cancer syndrome that comes with its bevy of barriers. With a family medical history steeped in cancer, it's as if I carry a ticking time bomb on my back, each moment fraught with the looming threat of its detonation. Tick, tick, tick . . .

I thought of this quote from the book “Quit Like a Woman: The Radical Choice to Not Drink in a Culture Obsessed with Alcohol.”

“We are hyper-vigilant about everything we put into our body, everything we do to our body, and we are proud of this. We Instagram how proud we are of this, and we follow Goop and Well+Good, and we drop 40 bucks on an exercise class because there are healing crystals in the floor.

The global wellness economy is estimated to be worth $4 trillion.

We are on an endless and expensive quest for wellness and vitality and youth.

Faced with a cascade of hardships over the past few years, I knew 2024 had to mark a turning point — I needed to make a cataclysmic change in my life and adopt healthier habits to deal with stress. Thus, I embarked on Dry January, a tentative decision that proved to be the catalyst for a profound transformation.

Little did I know, when I first committed to Dry January, that it would extend far beyond its initial confines. Refraining from alcohol became more than just a month-long experiment; it evolved into a lifestyle choice driven by necessity and a deep understanding of its implications.

Abstinence from alcohol is particularly crucial for people with Lynch syndrome. Even in moderation, research shows that alcohol can significantly heighten the risk of certain cancers, including the already prevalent colorectal cancer associated with Lynch syndrome. By abstaining from alcohol, I am proactively mitigating this risk and placing my long-term health at the forefront.

The positive impact on my life has been undeniable. First and foremost, there has been a remarkable clarity of mind. Free from the fog of alcohol, my thoughts are sharper, I am more articulate and I feel more in tune with myself than ever before. This newfound understanding has boosted my productivity and improved my self-control and confidence.

As the tectonic plates of my life shifted beneath the surface, I found that the ripples of change extended far beyond my consciousness. With this clarity, I've also become less tolerant of people's BS. I've grown more discerning in my relationships, no longer willing to invest time and energy in superficial connections or tolerate toxic behaviors. Instead, I've focused on fostering more profound, meaningful connections with loved ones and forging new bonds based on authenticity and shared values. Even in the quiet moments of solitude, this shift has brought a profound sense of alignment with my purpose and a clarity of vision that guides me toward endeavors that genuinely matter.

Furthermore, shedding the habit of drinking has led to noticeable improvements in my well-being. I have experienced weight loss, heightened energy levels, better sleep, less overall anxiety (except for the occasional scanxiety) and a sense of vitality that's impossible to ignore. Finally, the compliments from friends and family about my appearance serve as a reassuring validation of the positive changes I have made.

My only regret is that I cannot help but wish I had embraced life sans liquor sooner. The sobering realization of the detrimental effects of alcohol on my health, particularly the increased cancer risk, is something I wish I had fully grasped earlier on. However, I am immensely grateful for the opportunity to prioritize my health and well-being now and in the future.

I have made a concerted effort to adopt healthier coping skills and habits, further enhancing my journey towards well-being. Instead of reaching for a drink to wind down at the end of the day, I now find solace in activities that nurture my mind, body and soul. Walking with my dog in nature, taking long baths, reading and writing have become staples in my nightly routine. They provide me with moments of tranquility and reflection, helping me clear my mind and rejuvenate my spirit.

Two books that I found extremely helpful during this process are James Clear's "Atomic Habits" and Holly Whitaker's "Quit Like a Woman." They offer practical guidance on cultivating healthier habits and navigating challenges with grace and determination.

Replacing old habits with nourishing activities reinforced my commitment to health and enriched my life in countless ways. Each positive, tiny action I take daily adds up and reminds me of the power of mindful choices and their transformative impact on my overall health and happiness.

Quitting drinking alcohol was so important for my well-being and also decreases the threat of developing certain cancers, especially with Lynch syndrome.

No Alcohol Means Improving My Well-Being, Especially With Lynch Syndrome 

On my morning walk today, I encountered a pileated woodpecker religiously hammering its beak against a tree. As I observed this diligent bird, I thought about my emotional state a month ago and couldn't help but laugh. Its persistent pecking reminded me of the anxiety I felt a month ago before my Lynch syndrome cancer screenings.

Scanxiety often resembles the futile act of repeatedly striking one's head against a tree, sans the woodpecker's remarkable physical adaptations. The bird's hyoid bone, tightly enveloping its skull with each peck, serves as a protective shield, protecting its delicate brain from harm.

As I watched the woodpecker's relentless endeavor, an analogy unfolded. Every strike of its beak resonated with the familiar rhythm of scanxiety—a ruthless, unyielding beat. For me, anxiety transcends fleeting worry or momentary discomfort; it's an enduring force that can feel as fruitless as pounding one's head against a solid surface.The woodpecker's behavior reflected the familiar feeling of futility that often accompanies anxiety, where despite tireless efforts, the desired outcome seems just out of reach.

Still, amidst this shared struggle, solace emerged as I contemplated the woodpecker's remarkable adaptation: its hyoid bone. This seemingly simple anatomical feature assumed profound significance as I pondered its role as a protective barrier for the woodpecker's brain. The hyoid functions as a guardian with each peck, ensuring the bird's safety and wellbeing despite repeated head trauma.

Three weeks have elapsed since my return from Mayo. Since my last check-up a year ago, two benign polyps have surfaced—one in my stomach, the other in my duodenum. It is a firm reminder of the imperative and meticulous regular screenings — a necessary defense against Lynch syndrome's elusive nature.

To complicate matters, inflammation was discovered in my duodenum, and in turn, this has caused gastritis, potentially exacerbated by the daily aspirin intake aimed at preventing colorectal cancer. Navigating the management of one condition while inadvertently aggravating another one highlights the intricate balancing act inherent in life with Lynch syndrome— the juggling of priorities packed with potential consequences. I learned this lesson the hard way when I opted for the prophylactic removal of my ovaries to prevent ovarian cancer. Most medical decisions entail unsavory trade-offs.

Thinking of my family's medical history and the looming shadow of cancer, I'm reminded of the daunting prospect of facing similar health battles to my brothers. Preserving my physical integrity remains my priority, focusing on quality of life over mere longevity. The thought of undergoing treatments that might diminish my physical wellbeing is met with understandable hesitation.

I recounted the woodpecker encounter to my best friend this morning. She was well aware of my vulnerability and fragility before my scans, yet she laughed and remarked that I possess a spine of steel, unlike anyone else she knows. 

Following my morning stroll through the woods, I realized that akin to the woodpecker's protective adaptations and my moments of vulnerability, I possess an inner strength adept at confronting anxiety head-on. The woodpecker's presence evolved into a poignant symbol, serving as a reminder of resilience, fortitude amid vulnerability, and the importance of facing life's obstacles with determination and grace, even during the most challenging times.


While strolling through the woods, my eyes landed on a woodpecker, whose actions sparked a cancer analogy in my mind.

Woodpecker Wisdom Unfolds a Cancer Analogy 

Scanxiety is a term coined to describe the mix of fear, anxiety and stress associated with medical scans. This feeling is an authentic and often overwhelming experience for individuals facing Lynch syndrome, various other hereditary cancer syndromes, patients with cancer and survivors.

Lynch syndrome, the most common hereditary condition, predisposes individuals to multiple types of cancer, particularly colorectal and endometrial cancer. While regular screenings are crucial for early detection and intervention when cancer is most treatable, they also bring unique emotional challenges.

Lynch syndrome, a hereditary condition stemming from genetic mutations, significantly raises the risk of certain cancers, including colorectal and endometrial cancer. For me, this diagnosis has meant navigating a delicate balance between proactive screenings and the overwhelming anxiety that accompanies them.

I will soon make my annual pilgrimage to Mayo in Rochester, Minnesota, for the Lynch syndrome scans. For some reason or another, my scanxiety is worse than usual, and its manifestation at this point is complex and multifaceted. I'm consumed by fear and exhaustion of the unknown leading up to each scan and test. The possibility of receiving news about cancer feels like a heavy weight on my shoulders, dominating my thoughts and emotions. The waiting period is a relentless battle against "what ifs" and worst-case scenarios, each moment feeling like an eternity.

The anticipation of undergoing medical procedures only adds another layer of stress. The anxiety and discomfort during scans heighten my sense of vulnerability and helplessness. As someone who has witnessed the toll of cancer on my brothers, the death of my eldest brother firsthand triggers traumatic memories, intensifying the emotional turmoil.

Scanxiety this year has led to difficulty concentrating and disrupted sleep patterns. It can strain my relationships as loved ones grapple to understand and support the emotional rollercoaster I'm riding. Seeking support from understanding friends, my son, and other previvors has provided a lifeline of empathy and validation, reminding me that I'm not alone in this fight.

Expressing my emotions through writing has always been a therapeutic release for me. Mindfulness and relaxation techniques have become essential to my coping strategies, offering moments of calm amidst the storm. Taking warm baths and listening to soothing music, such as binaural beats, helps calm my mind. Reducing my coffee intake and enjoying more mushroom coffee seems to help reduce my anxiety a bit. Turning my phone off, taking naps, and engaging in activities that bring joy and fulfillment is a welcome distraction from the relentless cycle of worry and fear. It is essential during this time to list what is going well in my life and all that I am grateful for. Most importantly, I need to remind myself that I am in stellar medical hands.

Ultimately, living with scanxiety due to Lynch syndrome is about finding a delicate balance between vigilance and self-care. While the fear of cancer may never fully dissipate, I refuse to let it overshadow the beauty and potential of everyday life. By acknowledging and addressing my emotional needs, I'm learning to navigate the rollercoaster of anxiety with resilience and grace and looking forward to brighter days ahead.

When I have scanxiety, I try to reduce my anxiety by taking warm baths and writing.

Georgia Hurst

What I Wish I Was Told About Lynch Syndrome

No Alcohol Means Improving My Well-Being, Especially With Lynch Syndrome

Woodpecker Wisdom Unfolds a Cancer Analogy

How I Deal With Scanxiety

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