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.

I met Amy Byer Shainman, a passionate advocate for those with BRCA mutations, more than a decade ago during a Twitter chat. I was cracking jokes in the middle of a heavy conversation regarding surgical menopause and hot flashes when she messaged me right away -- she knew instantly that we were destined to be friends, and she was right. The rest was history.

Amy and I don't share the same mutation — she carries the BRCA1 mutation, and I have Lynch syndrome. On the surface, those look like two very different paths. But once we got to know each other, it was clear we shared a lot of the same terrain: risk-reducing surgeries, surgical menopause, the long-term side effects that nobody warns you about, and the emotional toll of being "healthy" while still living under the constant shadow of cancer.

Despite our genetic differences, we spoke the same language — the language of survival. I know many in the Lynch syndrome community share the frustration when BRCA receives more attention — more research, more visibility, and more funding. Angelina Jolie's public disclosure of her BRCA status only amplified that feeling. Who would be our Angelina, shining a light on Lynch syndrome, the most common hereditary cancer syndrome of all? I understand that anger.

But when I was diagnosed, I wanted to understand all hereditary cancer syndromes, not just Lynch. What struck me were the parallels amongst the syndromes -- the impossible choices, the gravity of generational trauma, the permanent physical changes, survivor's guilt, and the lingering fear that stays with you no matter how many surgeries you've endured. It became clear: we are all walking the same path, even if it has different names.

Amy understood that, too. She taught me a great deal about advocacy, and together we found ways to raise awareness about hereditary cancer syndromes. We believed in the same mission: no matter the mutation, every patient deserves to be heard, supported, and seen.

Not every community experience I had was so supportive. When I started writing about my oophorectomy, I received mixed feedback. Some people appreciated my honesty about the aftermath — the hormonal crash, the depression, the grief, and many other charming challenges. Others, though, complained. They worried that by speaking candidly about the aftermath of the oophorectomy, I might scare people away from having these life-saving surgeries. I wasn't trying to discourage anyone — I was telling my truth. Surgery saved my life, but it came with very real costs. I needed space to process that reality.

Amy never asked me to soften my words or tidy up my story. She knew that telling the whole truth about these procedures — the gratitude and the grief — mattered. She gave me room to be complicated, contradictory, and human. That kind of support is rare.

Beyond being a friend, Amy is an extraordinary advocate. She's known as "The BRCA Responder" on social media due to her tireless work in educating others about hereditary cancer risk. Her book, Resurrection Lily: The BRCA Gene, Hereditary Cancer, and Lifesaving Whispers from the Grandmother I Never Knew, is part memoir, part guidebook, and has helped countless people navigate the overwhelming world of genetic risk.

She has also produced influential films, including Pink & Blue: Colors of Hereditary Cancer and her latest project, Love, Danielle. These movies give a face and a voice to the hereditary cancer community, telling stories that medical journals can't capture. They show what it means to live this life — the decisions, the losses, and the resilience.

Amy is my muse every day -- not only because of what she's accomplished, but because of how she does it — with obscene quantities of empathy, honesty, and generosity. She is proof that advocacy isn't just about statistics or science; it's about humanity.

Over the years, Amy has become more than an advocate or even a friend — she's become family. The kind you choose. She has been the steady voice on the other end of the line, reminding me that I am not alone.

What I've learned from Amy is that real support isn't about pushing someone toward a particular decision or muting the more complex truths. Real support is about standing with someone, even when their story is complex to hear. It's about saying, "I see you. I hear you. And you don't have to go through this alone."

For me, Amy has been that person, and I will always be grateful.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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Articles

The narrative highlights the profound bond between two advocates for hereditary cancer syndromes, despite differing genetic mutations. It underscores the shared experiences of risk-reducing surgeries, emotional challenges, and the need for comprehensive advocacy. The story emphasizes the importance of honest dialogue about the complexities of living with hereditary cancer risks, and the role of empathy and support in advocacy. Amy Byer Shainman, a prominent figure in this field, exemplifies advocacy through her educational efforts, films, and writings, offering a voice to those navigating genetic cancer risks.

I share how my friendship with advocate Amy Byer Shainman helped me navigate hereditary cancer, showing that real support comes from empath and honesty.

Finding Support in Unexpected Places Through Hereditary Cancer Advocacy

"The ovaries don't just grow egg cells; they pump out a hormone cocktail that maintains the health of virtually every organ system, from the heart to the bones to the brain."

When I was first diagnosed with Lynch syndrome, I understood the urgency of removing my ovaries to reduce my cancer risk — but I didn't fully grasp the long-term consequences that would follow. I made a medically necessary, life-saving choice. What I didn't expect was how profoundly it would impact the rest of my body and how it would affect my aging.

Lynch syndrome increases the risk of several cancers — particularly colorectal, endometrial, and ovarian. For individuals with specific gene variants, such as MLH1, MSH2, or MSH6, the recommended protocol often includes a hysterectomy and oophorectomy before natural menopause, typically in the late 30s or early 40s. That's what I did. One surgery, and just like that, I was in menopause.

But surgical menopause isn't a slow transition. There's no gentle decline. It's an abrupt hormonal crash. One day you have estrogen, the next you don't. Estrogen does more than regulate reproduction — it protects your bones, joints, brain, heart, and emotional well-being. When it's gone, your body feels the loss everywhere.

Lately, I've been dealing with osteoarthritis in both my hands and knees — fairly typical as we age, but the flare-ups can be debilitating. I also live with familial hypercholesterolemia (FH), a genetic disorder I inherited from my mother that causes dangerously high cholesterol and significantly increases the risk of early heart disease. Because of FH, I've always had to be vigilant about my cardiovascular health.

The loss of estrogen only compounded the issue. Recently, I developed high blood pressure and atherosclerosis. The abrupt hormonal crash that followed my oophorectomy likely accelerated the progression of these conditions. Estrogen had been acting as a protective buffer — and once it was gone, my arteries began to suffer.

We're finally starting to see a broader conversation about menopause, thanks to advocates like Dr. Louise Newsom and Dr. Mary Claire Haver. They're breaking the silence around hormone health, educating the public, and empowering women to understand their symptoms — and their options. I'm grateful for their work — menopausal women need visibility, education, and support.

But too often, that conversation centers on natural menopause — on women in their 50s easing out of fertility over time. What about those of us who didn't have time? What about the women thrown into menopause overnight due to genetic risk? Where are our voices?

As a previvor, I made an impossible choice. I said goodbye to my hormones, my fertility, and perfectly healthy organs in the name of staying alive. But I wasn't prepared for the ripple effects — on my joints, my heart, my energy, my sense of self. No one told me that estrogen was protecting more than just my reproductive system.

These days, I manage chronic pain, heart disease, and inflammation. I move my body every day — not because I'm motivated or inspired, but because I need to. I walk, I stretch, I strength train. I eat anti-inflammatory foods. I hydrate. I rest when I need to. I take my medications and keep every specialist appointment. I treat my health like a full-time job.

And I care for my mental health just as intentionally. Living with a genetic condition and chronic illness is exhausting. It wears on your joy. I've learned to build stillness into my day. I surround myself with music, nature, and quiet. I permit myself to grieve the body I used to have — and permission to love the one I'm in now.

Doctors still love to say, "This is just part of aging." But I know better. This isn't just aging — this is what happens when protective hormones are taken away too soon. I don't regret my surgery. I would make the same decision again. But I want better care for the women who come after me. I want them to know the whole picture — the risk of cancer, yes, but also the risk of what happens after prevention.

We need more research. More nuanced care. A place in the menopause conversation that includes younger women who went through it surgically and suddenly. We exist. We matter.

Despite all of it — the pain, the plaque, the fatigue — I'm still here, still showing up, and still moving forward. I'm beginning to believe that this is what strength looks like. Not pretending things are fine, but finding ways to thrive anyway.

If you've had your ovaries removed and now feel like your body is falling apart, please hear this: it's not just in your head. And it's not "just aging." You deserve answers. You deserve care. Please talk to your doctor, and know that you're not alone.

The narrative highlights the profound impact of surgical menopause following oophorectomy in individuals with Lynch syndrome, emphasizing the abrupt hormonal changes and their extensive effects on overall health. The author shares personal experiences of managing chronic conditions like osteoarthritis, hypercholesterolemia, and cardiovascular issues exacerbated by the loss of estrogen. The piece advocates for increased awareness and research on the unique challenges faced by women undergoing early surgical menopause, urging for more comprehensive care and inclusion in menopause discussions to better support those affected.

After ovary removal to prevent cancer, the sudden loss of estrogen reshaped my health and life, showing the need for better care and awareness for women like me.

Preventing Ovarian Cancer: Living With Consequences

“Heaven is under our feet as well as over our heads.” — Henry David Thoreau

Living with Lynch syndrome means facing uncertainty with careful attention and a hopeful heart. In the midst of this, nature gently shows me that a sense of wonder and something greater surrounds us everywhere. Hiking beneath the trees, breathing in the cedar's aroma, and observing nature's gifts, I find calm and connection.

I walk the forest with my dog, and its trail becomes a metaphor for life itself. Sometimes the path is clear and straight; other times, it twists into unexpected turns. Deer dart across my way; a coyote trails silently behind; I spot mushrooms and stones cloaked in lush, mossy growth. Occasionally, I witness nature red in tooth and claw — a hawk swooping down to capture a bunny and feast before my eyes. Fallen trees often block the trail, turning the journey into an unpredictable obstacle course. The forest reminds me that life is full of surprises, both beautiful and challenging.

I especially love walking through the woods after a storm. The air is thick with petrichor — the earthy scent of rain meeting hot soil — and everything feels rinsed clean, raw, honest, and alive. Branches may be broken; puddles reflect the wounded canopy above; and fallen trees often lie across the path. Yet, even among the damage, there are signs of renewal. The ferns slowly unfurl; mushrooms break through the damp soil; and sunlight slips through the thinning clouds. It all feels familiar, like a reflection of my path: weathered by storms, changed in ways I didn't expect, but still growing. The forest doesn't dwell on what's broken, it leans into what's next, and that's where I find my hope.

I am in awe of the cathedral of trees around me. I feel tiny and insignificant yet deeply connected. It humbles me to realize I am just one small part of a vast, resilient ecosystem, one that adapts and renews itself with quiet strength. This resilience and constant adaptation inspire me.

Trees don't rush to grow, nor do they cling to old leaves or resist the coming seasons; they simply let them go when the time comes. They bend when the wind howls, yet somehow, they keep growing. There is something meditative and soothing in their quiet wisdom — a reminder that strength isn't always loud. Sometimes it simply stands tall, rooted and patient. Being in nature calls me to slow down, breathe deeply, and trust the cycles of growth and change unfolding both within me and around me.

The scent of cedar soothes my nerves and slows my breath, like an old friend quietly reassuring me that I am safe. Mushrooms and fungi fascinate me most. I notice the intricate network of fungi growing beneath the forest floor and on decaying logs. At first, I knew little; some mushrooms looked strange or colorful, others almost invisible unless I looked closely. But the more I learned, the more fascinated I became. Fungi play a crucial yet often overlooked role in the natural world.

Through vast underground mycelium networks, fungi connect trees, helping plants share nutrients and communicate with one another. They break down dead matter, recycling it into new life. Thriving by adapting to change, fungi quietly support the ecosystems in which they live. Mycelium links trees together, allowing them to share nutrients and even alert other organisms to danger; it is vital to the forest's health.

The forest teaches me that survival isn't always loud or visible. Strength often lies in adaptability, quiet support systems, and finding nourishment even in the darkest moments. I try to carry that wisdom with me, accepting change, tending to what's beneath the surface, and staying rooted while reaching for the light.

Science confirms that spending time in nature, breathing fresh air, soaking up sunlight, and immersing ourselves in green space is essential for well-being. Numerous studies show that ‘forest bathing’ lowers stress, boosts immune function, and lifts the spirit. For someone managing health challenges, these benefits can feel like a vital lifeline.

When life feels uncertain, I've found that nature has helped me feel grounded, as it is a space that humbles, heals, and never turns me away. The woods remind me, time and again, that change isn't something to fear; it can open the door to clarity. Like Thoreau, I walk among the trees and somehow come out standing a little taller.

Living with Lynch syndrome involves navigating uncertainty with mindfulness and hope. Nature offers solace and a sense of connection, as the forest becomes a metaphor for life's unpredictable journey. The resilience and adaptability of trees and fungi inspire a deeper understanding of strength and growth. Nature's quiet wisdom encourages slowing down, embracing change, and finding nourishment in challenging times. Scientific evidence supports the health benefits of spending time in nature, highlighting its role in reducing stress and enhancing well-being, especially for those facing health challenges.

Living with Lynch syndrome, nature’s quiet resilience teaches me to accept change, find calm, and stay rooted through life’s unexpected twists and storms.

Grounded in Nature: Finding Strength While Living 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.

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.

Georgia Hurst

Finding Support in Unexpected Places Through Hereditary Cancer Advocacy

Preventing Ovarian Cancer: Living With Consequences

Grounded in Nature: Finding Strength While Living with Lynch Syndrome

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

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