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The Positive Gene Podcast - Episode #7 - Rewriting Our Genetic Narratives:

Updated: Nov 21, 2023

Transformative Hope in the Face of Hereditary Cancer Risk


(Links mentioned in the episode are located at the bottom of the page)






Grandpa Joe and me on our front porch.  He loved taking pictures so it was rare to have a photo of him!

Introduction:

Welcome, friends; this is Sara Kavanaugh, and you've tuned into The Positive Gene Podcast. Today's episode takes us into another personal journey—one that begins with the somber realities of childhood but evolves into a testament to vigilance and hope.



As an 8-year-old, the concept of cancer was a stark reality in my life. My grandfather, who had already endured the ravages of throat and prostate cancer, came to live with us as he faced a new battle with colon cancer. Our home was filled with love, but the challenges of caring for someone so ill in a very modest, bustling household were immense. My mother (his daughter-in-law) did most of the care while she managed three kids (ages 8-15) and worked a part-time job at a nursing home. The early '80s offered few comforts for chemotherapy's harsh toll - the side effects were relentless and painful…and after over 40 years, the experience, sights, and sounds, left a profound impression on me—both of his resilience and the disease's punishing nature.



Witnessing his strength and frailty intertwined was etched into my young mind – a tale of what felt like an inevitable march toward an ending I could barely comprehend. Again, this was during a time when conversation about cancer was more hushed, the resources scarcer, and the community of support yet to be built. His journey ended when I was still grappling with the beginnings of my own, leaving us at the age of 78.



My mom, Mary Ann at my parents' 30th wedding anniversary party.

My mother's health was no less complex, marked by an ongoing series of health scares and medical interventions, thyroid cancer among them. Though it wasn't the ailment that claimed her, the constant cycle of doctors, and surgeries over 30 years, the specter of illness loomed large, filling my childhood and, ultimately, my adulthood, left me with health anxiety and unease about my mortality.




Despite this, the story I inherited is being rewritten now - with all of you at my side! With time, I've reshaped the narrative from one seemingly predetermined by genetics to one defined by proactive living and empowerment. On this podcast, I seek to share that transition to explore how we can carry the knowledge of hereditary cancer risk without being weighed down by it.

Today, we're talking about confronting the 'what if' and turning it into 'what can be done.’ We'll discuss the paradox of doing everything 'right' and still facing the unknown, the importance of proactive surveillance, and how to combat fear with informed empowerment. Most importantly, we'll share how to embrace life fully amidst these challenges.


So let's get started.


Today, we're diving deep into the complexity of our genetics and the emotional journey that accompanies the knowledge of our inherited cancer risks. It's about finding the balance between being informed and being overwhelmed. So I invite you to explore with me this delicate balance of understanding our hereditary cancer risk without being engulfed by what we often feel may be the "inevitable." It's like walking a tightrope between knowledge and fear, isn't it? So, how do we manage this? How do we embrace this knowledge without letting it cloud our horizons?


Let's start with the Mental and Emotional Weight of 'Inevitability':


I learned the term 'cancer fatalism' recently and how it echoes in the halls of clinics and the quiet moments of our deepest fears. It's that persistent whisper suggesting that a cancer diagnosis is the end of the road, a predetermined point on our family map. But here's a fact that might surprise you: 90% of cancers are not due to inherited mutations but arise during our lifetimes.(https://www.cancer.gov/about-cancer/causes-prevention/risk/myths). This means that the lifestyle choices we make, the environments we live in, and the screenings we attend all contribute significantly to our cancer narratives. You will hear more about this later in the episode.


For me, the fear is tangible, not only from my childhood narrative but now as a mom—it's the thought of my children facing their futures without me or that they've inherited my mutation. How do I cope? I will do ANYTHING in my power to stay ahead of my hereditary cancer syndrome diagnosis despite the discomforts or anxieties of screenings or, as I said before, that looming gray cloud that sometimes hangs over us when we think too long and hard about our mutations. I know they have the potential to not only address early symptoms but also knowing my mutations make a significant difference in how I would be treated.

See how I did that? I flipped that tangible fear from inevitability to empowerment - this helps me feel that I have an impact on improving my quality of life or even chances of survival should I develop cancer in my lifetime.


Next, there is this paradox of doing 'All the Right Things': You've heard the stories - My friend/family member did all the right things; how did they end up with cancer?

As shared on the American Cancer Society's website, "It is usually not possible to know exactly why one person develops cancer and another doesn't."… So, let's revisit the facts: Cancer is caused by harmful changes (mutations) in genes. Only about 5 to 10 percent of cancers are caused by harmful mutations that are inherited from a person's parents. In families with an inherited cancer-causing mutation, multiple family members will often develop the same type of cancer.


The remaining 90 to 95 percent of cancers are caused by mutations that happen during a person's lifetime as a natural result of aging and exposure to environmental factors, such as tobacco smoke and radiation. These cancers are called "non-hereditary" or "spontaneous" cancers. (https://www.cancer.gov/about-cancer/causes-prevention/risk/myths)


Although some risk factors can be avoided, others—such as growing older—cannot. Limiting your exposure to avoidable risk factors like alcohol, cancer-causing substances, chronic inflammation, poor diet, and sunlight may lower your risk of developing certain cancers. You can read more at cancer.org or see the NCI fact sheets on this subject as well. I will have a direct link to these resources in the show notes.


For those hopeful stories out there where diligence despite "doing all the right" things paid off, these stories of resilience shine a beacon on the importance of symptom awareness and being proactive. They don't just tell us about the unpredictability of cancer—it's a narrative of triumph over statistics, and it teaches each a valuable lesson.


It also acknowledges that while being informed and diligent about health is crucial, these actions are part of a larger, complex scenario where many factors influencing health outcomes are beyond individual control.


This leads us to why surveillance and proactive steps matter:


Thyroid nodule screening for remaining nodule on my right side (I had left side of my thyroid removed in February 2023)

In a recent Dana-Farber podcast, "Cancer Mythbusters," a podcast about the many myths and misconceptions in the world of cancer - Guest Dr. Huma Rana, clinical director of the Center for Cancer Genetics and Prevention at Dana-Farber shared insights on cancer surveillance and echoed the sentiment that while cancer can sometimes sneak past our preventive measures, early detection, and proactive steps are our strongest allies in this fight. As for screenings, they're our eyes in the fog of war, capable of detecting threats before they materialize fully (https://www.dana-farber.org/health-library/cancer-mythbusters-cancer-genetics-prevention)



So what does this look like for us "High-Risk Individuals," those of us carrying a hereditary cancer mutation?

  • Early Detection: Regular screening tests to catch cancer early.

  • Preventive Treatment: Use of medications or other methods to reduce cancer risk.

  • Prophylactic Surgery: Removal of tissue at high risk for developing cancer.

This also means there will be tailored guidelines / specific recommendations that exist for those with inherited gene mutations or cancer syndromes, differing from average-risk populations.


Again, since I am not a medical professional, I strongly encourage you to talk to your physician or consult with a cancer genetics specialist to personalize your plan if you haven't done this already. I also recommend you visit the FORCE website at www.facingourrisk.org for updated guidelines sorted by cancer type and gene mutation and remember to review your plan regularly with your healthcare providers, considering the latest research and your own preferences. See the show notes for details.


The conversations we have with our healthcare providers, the resources we access, and the communities we engage with, like cancer.org and FORCE (www.facingourrisk.org), are vital. They're not just tools; they're lifelines that offer us clarity, support, and empowerment, a sense of control.


And so, we find ourselves at the heart of today's topic—how do we rewrite our genetic narrative? Now that we've talked through the tools and thought processes, how do we combat fear and empower ourselves in the face of genetic risks? It starts with understanding that our genes are not our destiny - you've probably heard that before. They are a single thread in a complex world of risk factors, many of which we can influence through our actions.


The silver lining? This knowledge allows us to embrace life fully. It equips us to appreciate every moment and every breath and to live in a way that honors our health and our happiness. It's about enjoying the richness of life with the people we love, all while being informed and vigilant.


As our time together comes to a close, remember that while the presence of hereditary cancer in our family trees might cast a long shadow as mine did at the age of 8 years old, we have the power to shine a light in that darkness. We do this by staying informed, by taking proactive steps, and by supporting each other through every step of the journey.


Let's not allow the weight of what might be to anchor us away from what is—the joy, the love, and the life that's happening right now. So, take that knowledge, that empowerment, and use it to help you navigate the complexities of our hereditary health.


Thank you for sharing this space with me. Until next time, stay informed, stay empowered, and remember you have the strength to navigate your journey positively.


Links referenced in this episode:


Copyright © 2023, Sara Kavanaugh. All rights reserved.

All content on this blog, including text, images, and any other original works, unless otherwise noted, is the sole property of Sara Kavanaugh and is protected under international copyright laws. No part of this blog may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. For permission requests, write to the author at sara@sarakavanaugh.com.

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