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

Georgia Hurst is a fierce patient advocate for those with Lynch syndrome.

"Look, if you had one shot or one opportunity, to seize everything you ever wanted in one moment — would you capture it or just let it slip?" These are lyrics from the song, "Lose Yourself," by Eminem.

This quote runs through your head in quiet, everyday moments — long before Lynch syndrome crashed into your life. It becomes a constant motivator as you raise your son, Nicholas. From the moment Nicholas is born, you feel a deep responsibility to make every moment count. You never take the ordinary for granted, especially after witnessing your brother Jimmy's battle with colorectal cancer.

You play this Eminem track while engaging in the most mundane activities, and it slowly becomes an integral part of your philosophy. This is your one shot — don't miss it. You may not know precisely what that means at the time, but it makes you a more present and conscious person and parent. It reminds you to listen closely, love fiercely, and prioritize the moments that truly matter.

Then Lynch syndrome arrives — and those lyrics, once motivating, become urgent. Suddenly, this is no longer metaphorical. It becomes literal: you have one shot.

You remember the moment in the genetic counselor's office when she says, "You have tested positive for Lynch syndrome,” and it will hit you like a lightning bolt and become a constant looming shadow in your life. You learn you have a significantly increased lifetime risk of several aggressive cancers. You know you'll need frequent screenings, regular colonoscopies and endoscopies, and, ultimately, prophylactic surgeries. You nod politely, but inside, you are incandescent with rage. Rage that this gene mutation stole your brother. Rage that it now demands precious pieces of your body as collateral. Rage that you have to make yourself sick and cut yourself open to stay well. But worse of all, rage about knowing your son may have this mutation, too.

You are angry about what you have to lose to gain your future. No one should choose between health and wholeness. Between peace of mind and hormonal hell.

But here's the thing: your anger doesn't paralyze you—it empowers you.

Because this isn't just about you — it's about Nicholas. You think of Eminem's line again: Would you capture it or just let it slip?

You choose colonoscopies and vigilant surveillance. You select a prophylactic hysterectomy and oophorectomy — knowing full well that losing your uterus and ovaries will profoundly change you, but also knowing that not removing your reproductive parts could cost you and Nicholas everything. And for all the grief that follows — the brutal plunge into surgical menopause, the loss of control, the identity shift — you hold onto one truth: This is the cost of showing up for your life, and you pay it willingly.

Your brother Jimmy doesn't get the chance to prevent his cancer. By the time he is diagnosed, it's too late. He dies in his thirties, leaving behind a baby who will never know him. His death lights a fire in you. You won't follow the same path if you can help it. You have tools Jimmy never had: knowledge, time, and choice. You take that one shot — and every follow-up scan and surgery since is done in his name, too. Your advocacy, your writing, and your vigilance are threads in the legacy Jimmy doesn't get to leave behind.

And the best part? You're still here. Cancer-free. Alive. Thriving.

All of these wonderful things with your son by your side.

There's a strange paradox with a diagnosis like this: it makes the world feel more dangerous and more beautiful at the same time. You begin seeing moments differently. Things others take for granted — ordinary dinners, walks, conversations — you see them in high definition. Lynch syndrome shifts your tectonic plates, but through the cracks, light comes in. And that light shines directly on your son.

From his earliest days, you nurture Nicholas's curiosity by taking him to explore the wonders of science and history side by side. You spend countless hours in museums and outdoors together—hiking trails, wandering parks, watching the stars — instilling in him a love of nature and a sense of awe for the universe. These experiences spark his imagination and guide him toward his passion for astrophysics.

He grows into a thoughtful, brilliant, compassionate young man. His mind operates on a grand scale, but his heart is deeply rooted. Your relationship with him is extraordinary—honest, funny, supportive, real. The kind of bond that comes from not wasting time, from facing mortality head-on and choosing to live anyway.

And when you watch him walk across the stage at his college graduation with a degree in physics, you don't just feel pride — you feel triumph. You make it to that moment — and not by accident. That moment is bought with pain, resilience, and a refusal to let this chance slip away.

When you are newly diagnosed, you think being strong means pushing through without flinching. Now, you know better. Strength is crying before a colonoscopy and endoscopy and going through with them anyway. Strength is having difficult conversations with your doctors, your family, and your future self. Strength lies in letting people in and showing others the door. Strength is being terrified of what might come and doing the next right thing anyway. You live years now without a cancer diagnosis — because of what you choose to do before cancer shows up. You embrace that one shot, even when it costs significant parts of yourself.

You become a fierce advocate and a voice for others navigating this path. You write the words you once needed to hear. You share Jimmy's story so others won't have to live it. You open the door for others to understand that inherited cancer syndromes aren't just risks—they are whole-life changes that demand courage every single day.

And you continue to parent the way you always have: with intention, presence, and deep, abiding love — because you know, more than most, that this life isn't guaranteed.

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Articles

A personal journey with Lynch syndrome highlights the transformative power of resilience and proactive healthcare. The narrative underscores the importance of seizing opportunities for preventive measures, driven by the memory of a loved one's battle with cancer. The protagonist's experience with genetic counseling and subsequent medical interventions illustrates the emotional and physical challenges faced. Despite the adversity, the story emphasizes empowerment through advocacy, education, and a commitment to living fully. The narrative also celebrates the profound impact of nurturing relationships and the legacy of courage and determination passed on to future generations.

Eminem’s lyric about having “one shot” stayed with me, and writing this letter to my newly diagnosed self, reminds me how that mindset saved my life.

Don’t Miss Your Shot: A Letter to My Newly Diagnosed Self

Next week, I’ll sit among a sea of proud families and watch my son, Nicholas, graduate from The University of Illinois with a degree in Physics. That moment will be filled with joy, gratitude, and reflection. This milestone isn’t just about Nicholas’s accomplishments — it represents something more profound. It’s the gift of life, the privilege of being here to witness it, and the chance to celebrate a moment that could have been taken from me. For that, I am eternally grateful.

As a Lynch syndrome previvor, I live with the knowledge that my body carries a genetic mutation that significantly increases my cancer risk. The same mutation took my brother Jimmy far too soon. Jimmy didn’t see his daughter’s first steps or hear her words. He never got to witness her milestones, let alone watch her graduate from college. His life, like so many others, was stolen by colorectal cancer tied to Lynch syndrome.

That loss changed everything. It became the reason I took aggressive steps to protect my future. I underwent a prophylactic hysterectomy and oophorectomy, knowing full well the emotional and physical toll it would take. I faced surgical menopause and grieved what I lost in the name of prevention — but I did it so I could stay. So I could be here in order to witness my son grow and thrive and cross this finish line.

As I sit in the crowd at his graduation, I’ll hold two truths: deep pride for Nicholas and quiet, reverent gratitude that I lived to see this moment — a moment that so many, including my brother, never had.

Nicholas has endured a lot in his young life. He lost his father during his first year of college — a heartbreak that reshaped everything. Then, last year, he lost his beloved Aunt Catherine — my best friend of thirty years and a second mother to him in every way. His grandfather faced prostate cancer three years ago and is now in remission. His grandmother is currently recovering from major pancreatic cancer surgery. Neither of them will be able to attend his graduation. It will be a painful absence — another weight on a heart already carrying too much.

And still, Nicholas never wavers. Through all the grief, uncertainty, and loss, he continues to show up. He puts one foot in front of the other and moves forward with quiet strength. He’s grown into a thoughtful, kind, and brilliant young man — and the resilience and grace he carries through it all leaves me deeply humbled.

This graduation isn’t just a personal victory for Nicholas — it’s a reminder of life’s fragility and the quiet strength it takes to keep going. As his mother and as a previvor, this moment means everything. It’s sacred.

Living as a previvor means walking a line between fear and hope, mourning what might have been while daring to dream about what still can be. It’s a constant, mostly invisible struggle. But when the reward comes — when you witness something your loved ones were denied — it’s holy ground.

As Nicholas walks across that stage, I’ll carry Jimmy with me. I think of him often, but especially now. His death was the turning point that propelled me to make difficult, life-preserving choices. I had the chance to act — he didn’t. I chose to remove healthy organs to reduce my cancer risks, all for the hope of being here — for this moment. To witness my son reach milestones my brother Jimmy never lived to see with his own child.

Nicholas’s graduation is more than a celebration of academic success. It’s a testament to love, endurance, and the fierce will to survive. It’s proof that even amid loss, resilience can flourish. Love can carry us through.

Taking preventative action — no matter how painful — made space for this moment — for life, for presence, for witnessing.

You did the hard emotional labor of healing while building your future, not just the coursework. Your graduation is a beacon of light for all of us.

For your Father. For Auntie Catherine. For Uncle Jimmy. For me. But most of all, for yourself.

What an honor it is to be your Mother. What a gift.

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A mother reflects on her son Nicholas's graduation, a moment filled with pride and gratitude, especially as a Lynch syndrome previvor. Her brother's early death from colorectal cancer motivated her to take preventive measures, allowing her to witness this milestone. Despite personal losses, Nicholas has shown resilience and strength. His graduation symbolizes not only academic success but also the fragility of life and the power of love and endurance. The mother's preventive actions have enabled her to be present for this significant moment, celebrating Nicholas's achievements and resilience.

As a Lynch syndrome previvor, I feel deep gratitude to witness my son’s graduation — a milestone my brother never lived to see with his own child.

Reflecting on my Son's Graduation as a Previvor

Georgia Hurst is a fierce patient advocate for those with Lynch syndrome. Catch up on all of Georgia's blogs

Spring has always been a season of renewal — a time to shed the old and invite in the new. I'm struck by how the world transforms from muted grays to the vibrant, living colors of blooming trees and flowers every year. It's a powerful reminder that change is possible, natural, and stunning. While we often focus on tidying up our homes during this season, we sometimes overlook the importance of spring cleaning our minds. For me, one of the most transformative ways to do that this year has been through a digital detox.

Lynch syndrome, the most common hereditary cancer syndrome, already comes with its emotional challenges. The annual medical appointments, test results, and ongoing health concerns can create a mental load that feels never-ending; but, in recent years, I've noticed that the broader world's uncertainty — politically, economically, and socially — has added another layer of stress that’s hard to escape. The political climate, economic predictions, and constant news cycle often feel like an overwhelming backdrop to my life and can increase one's anxiety — making it harder to find peace.

What I didn't realize, though, was how much the barrage of digital noise was contributing to my stress. The bombardment of notifications, news updates and social media opinions kept me alert, which only added to the mental clutter. This spring, I've made intentional choices to unplug, and I've found that stepping away from the digital world has been one of the most empowering ways to reclaim my peace.

One of the first things I did was set clear boundaries with my devices. I now put my phone on "Do Not Disturb" from 7 p.m. to 7 a.m. This simple action helps me disconnect from the stream of notifications and alerts that can easily pull me out of the present moment. Without the pressure to check my phone every few minutes, I've created space for restful sleep and peaceful evenings, free from the digital noise.

I've also removed myself from social media platforms that I found particularly negative or draining. These platforms, while designed to connect us, often fuel anxiety and comparison. Beyond the emotional toll, I realized how much time I was wasting scrolling —time I could've spent cooking dinner for my friends, taking a long walk along the lake with my dog, writing for CURE or my Substack, or doing something that leaves me feeling fulfilled. Social media can steal hours from our lives without us even realizing it. I am more intentional with my time — this in turn has made my days feel fuller and more meaningful.

In this age of instant information, it's easy to get caught in the whirlwind of sensationalized news. The dramatic headlines, breaking alerts and 24/7 coverage often create a sense of urgency that amplifies stress and anxiety. I've stopped listening to the news on the radio or TV and instead focused on reading about current events at a time of my choosing. Reading allows me to digest information at my own pace and without the emotional intensity of sensationalized broadcasts. It is a considerable relief to take a step back from the constant bombardment and to consume news in a way that feels more intentional and less overwhelming.

I've also become more mindful of the music I listen to and the books I read. These choices directly affect my mood and mental state. I lean into music that soothes and uplifts me, and I reach for books that nourish rather than drain me — stories that give me perspective or allow me to escape gently, not ones that leave me feeling heavy or anxious.

This awareness has helped me protect my inner peace. It's a form of self-care that often goes overlooked but can be incredibly powerful when practiced consistently.

One of the most challenging parts of life — especially when you're facing a chronic illness, carrying a genetic predisposition to cancer, or caring for loved ones battling a disease — is learning to live with uncertainty. The constant "what-ifs" can overwhelm you beyond measure, eroding your peace of mind. A dear friend recently shared an article with me about embracing the unknown. It centered on a letter written in 1903 by the poet Rainer Maria Rilke to a young writer. In his wisdom, Rilke urged him to "live the questions now," rather than anxiously chasing after answers.

I've also learned to be mindful of my conversations with friends recently. The current political climate can be emotionally exhausting, and I've found that constant dialogue around it only adds to the noise. I walk regularly with friends, and while we may briefly acknowledge the headlines, we don't linger in political debate. Instead, we discuss books, ideas, research, and music — conversations that feed our curiosity rather than drain our energy. This subtle but powerful shift protects my peace.

In a world that constantly pushes us to know more, do more, and plan for every outcome, Rilke's wisdom is a gentle invitation to breathe, accept uncertainty as part of life and allow ourselves to evolve. Rilke's philosophy aligns perfectly with my digital detox. By stepping away from the noise, I can better sit with my questions rather than letting fear or chaos drive my reactions.

Spring is a time of growth, but growth doesn't always come in the form of clarity or direction. Sometimes, it's about becoming comfortable with the unknown, trusting that with time and stillness, the answers will unfold on their own.

I've found space to be without the pressure to stay on top of every headline or political debate. I've spent more time outside, listening to birdsong instead of breaking news. I've had more uninterrupted conversations with people I care about. And I've rediscovered the joy of being bored, a feeling that used to signal restlessness but now feels like freedom.

Stillness has become my sanctuary, and I look forward to it every day. It's not about ignoring the challenges of the world; it's about finding the balance between staying informed and protecting your mental and emotional well-being.

If you're feeling the world's weight on your shoulders, I encourage you to try your version of digital spring cleaning. Start small: put your phone on "Do Not Disturb," take breaks from social media and read the news instead of watching it. Be mindful about the music you listen to, the books you read and what you discuss with others. Think about how much time you're giving away to screens, and what you might gain if you reclaimed some time for yourself, your family, or your community.

Permit yourself to step away from the noise, and to embrace not having all the answers.

This spring, live the questions. Clear your mental space. Make room for the quiet. And in that quiet, may you find peace, clarity, and the grace to move forward — imperfect but whole.

Spring symbolizes renewal, prompting a shift from digital noise to mental clarity. The stress of Lynch syndrome, compounded by global uncertainties, is exacerbated by constant digital engagement. A digital detox, including setting device boundaries and reducing social media use, fosters peace and intentional living. Mindful consumption of news, music, and literature enhances mental well-being. Embracing uncertainty, inspired by Rainer Maria Rilke's philosophy, encourages living with questions rather than seeking immediate answers. This approach balances staying informed with protecting mental health, promoting growth through stillness and acceptance.

Unplugging from digital noise helped me find peace, clarity and room for growth during a season of emotional and mental renewal.

A Digital Detox for the Soul with Lynch Syndrome

For as long as I can remember, living with Lynch syndrome meant a constant awareness of my body and the risks it carries. The threat of cancer, always looming, was something I lived with — something I knew was part of my reality. Every scan and scope felt like a reminder that life is fragile and unpredictable. But nothing, nothing prepared me for the kind of fragility that would be thrown into sharp focus when I lost Catherine.

Last July, I lost Catherine, my best friend of thirty years.

Catherine wasn't just someone I talked to every day — she was the person I spoke to multiple times a day. She was woven into the fabric of my life. Catherine taught me everything I know about cooking, plants and moving through the world with gentleness and grace. She was the first person I called with good, bad or when I had no news. We did the New York Times puzzles together every morning at 5 a.m., without fail, and made a concerted effort to eat together once a week.

Grief doesn't come with instructions. It doesn't follow a straight path or obey any schedule. Some days, it crashes in like a wave, overwhelming everything in its path. On other days, it hums quietly in the background, always waiting. I still reach for my phone to text or send her a silly meme, only to be hit by the stark reality that there's no one on the other end. The silence where her laughter used to fill the space is the loudest sound I know. It's like someone ripped out the soundtrack to my life, leaving me in the quiet, frantically searching for something that isn't there anymore.

Catherine used to tell me that no one made her laugh like I did. I carry that with me now, like a keepsake. I think of it when the days feel exceptionally long or lonely. I hear her voice often — sometimes guiding, teasing, always present. She's not here, but I still listen.

Spring returns to life everywhere I look and reminds me of her — tulips, cyclamens and hellebores. And with them, memories of her. She loved everything about this time of year — except the time change. She loved how the world woke up after winter, how color returned from the gray. I feel her in the sun's warmth and see her in the smallest blooms. She loved the rain. Catherine wants to know she's still part of the season she loved most.

Losing Catherine didn’t teach me something new about the fragility of life — it simply made it impossible to ignore. I've always known that life is fragile; loss has been a constant companion. But the day I found her, everything within me shifted. Seeing her body — lifeless, still, and unrecognizable — changed something deep within me. It was as if the ground beneath me cracked open, and the world I thought I understood was forever altered. At that moment, my Lynch syndrome diagnosis no longer felt like something distant or abstract — it became real, palpable and urgent. Her death forced me to face what I had always known but never entirely accepted: life is fragile, uncertain, heartbreakingly short, and life as you know it can change in an instant. Don't take life and those for granted. Do for them and tell them you love them every opportunity you get.

This spring, I'm learning to begin again. Not in a grand or performative way.

In a way that honors her and makes space for me. I water my plants. I go for walks. I still do the New York Times puzzles, now on my own, but I hear her in the clues — words like "rococo" or "cancan” or "lantana" bring her back in an instant. I build new rituals to keep myself grounded, especially when I feel like drifting.

Grief and healing aren't opposites. They happen together. Living with Lynch syndrome means living with constant awareness — of scans, scopes and risks I can't entirely outrun. But losing Catherine gave me a different kind of awareness. It reminded me that while I can't control what my genes carry, I can control how I care for myself, how I show up for this life and how I create meaning.

This season, I'm planting new life. My small balcony will be full of Greek oregano, petunias, and other bits I know she'd approve of. She believed in the healing power of plants. I do, too. She'd smile, knowing I was out there with my watering can, tending to my plants how she tended to those she loved.

I took this ominous pic the morning of her death before I found her.

I'm cooking more — not because I love it, but because she used to nag me to cook for myself more often. I could live off Greek yogurt and green smoothies if left to my devices. But now, making an authentic meal feels like a way to keep her close. It's an act of memory, of love, of self-care.

Spring is often described as a season of hope. But for those of us grieving, that hope can feel hard to hold. Renewal doesn't mean forgetting. It doesn't mean moving on. It means learning to let something new grow alongside the loss. It means letting the pain have its place — without letting it take up all the space.

I'm tending to my body with screenings and food that supports my gut and immune health. I'm tending to my spirit with sleep, music, crossword puzzles and laughter when it comes. I'm choosing joy — not because everything's OK, but because joy helps me survive when it's not.

I'm still grieving. I always will. But I'm still here. I'm still growing.

If you're in the middle of grief — whether from death, a diagnosis or something more challenging to name — I hope you'll allow yourself a new beginning — even the smallest one: a single flower on your windowsill, a moment in the sun, a deep breath that reminds you: you're alive.

Healing doesn't mean the pain disappears. It means we learn to carry it — while making room to keep living.

Catherine is, too — in every bloom, every breeze, every raindrop and every laugh that slips out unexpectedly. She may be gone, but she's not gone from me. We live on through the souls we touch. And hers is with me, always. She is missed every nanosecond of the day.

Living with Lynch syndrome involves constant awareness of cancer risks, but the loss of a close friend, Catherine, brought a new understanding of life's fragility. Grief is unpredictable, and healing involves creating new rituals and finding meaning in everyday activities. The author honors Catherine by engaging in activities they shared, like cooking and gardening, and by embracing the healing power of plants. Grief and healing coexist, and while the pain remains, the author chooses to live purposefully, finding joy and hope in small moments and new beginnings.

What is lovely never dies, but passes into other loveliness, Stardust or seafoam, flower or winged air. ― Thomas Bailey Aldrich

Georgia Hurst

Don’t Miss Your Shot: A Letter to My Newly Diagnosed Self

Reflecting on my Son's Graduation as a Previvor

A Digital Detox for the Soul with Lynch Syndrome

Spring Looks Different This Year

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