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The Positive Gene Podcast -
Episode #5 - “Reclaiming Control: Defining Empowerment...

Updated: Nov 21, 2023

...In the Wake of Hereditary Cancer Risk


The Positive Gene Podcast - Ep.5 Transcript


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




Introduction: Welcome to 'The Positive Gene Podcast.' I'm your host, Sara Kavanaugh. In this episode, we venture into a deeply personal topic: how does one define empowerment when faced with the knowledge of an increased hereditary cancer risk? The moment you learn about a genetic mutation that predisposes you to cancer can feel like the ground has shifted beneath you. It can be a mix of understanding past family health puzzles while grappling with the implications for your future. Yet, in this episode, we'll explore what empowerment truly means within this context and discuss actionable steps you can take to reclaim control and navigate life after such a revelation.


Important Note:

Always remember, I am not a medical professional. My experiences and insights stem from being a hereditary cancer previvor and advocate. Always consult with healthcare professionals regarding your health care decisions.

Also, I love receiving feedback on the show and I hope you’re value out of the episodes for far. If you haven’t already, please be sure to rate and review the podcast. It helps other previvors and survivors to find this resource that could be a game changer in helping us reshape the narrative of hereditary health.


Empowerment's Evolution:

Okay, on to our episode - Empowerment! Yes, I know it might sound cliché. But in the context of your health, it's about having agency—control—even when things seem uncertain. Again, I know the term can seem overused, but bear with me. Empowerment in this context means having a say, understanding, and making informed decisions about your health. It's about being the author of your health story.

For many, empowerment begins as a small seed, often sown by a realization that something isn’t quite right. For me, that seed was planted when I began reading comments on my online support groups. I saw countless individuals advocating for their health, urging others to seek second opinions, to dive deep into research, especially when intuition whispered that something was amiss. When I discovered my Lynch Syndrome and CHEK2 mutations, I was overwhelmed with uncertainty. To be candid, even my physician wasn't familiar with either mutation. But rather than being swamped by confusion, my natural inclination was to turn to research, to delve into the layers of these mutations and understand their implications. This isn’t a boast; it’s a testament to what active engagement can look like. It became a collaborative journey with my physician, navigating the uncharted territory of hereditary cancer mutations together. It's a vivid reminder that empowerment can often stem from our most vulnerable moments, pushing us to engage, learn, and ultimately take control.


Pillars of Empowerment:

Diving deeper, empowerment, as outlined by an eHealth ERA project, stands on four pillars: Information, Access, Engagement, and Agency. I’ve made a few modifications to fit our discussion…

  • Information + Awareness:

    • You will hear this phrase often in the context of hereditary cancer risks - “Knowledge is Power”: When we talk about hereditary cancer risk, we're not speaking about an immediate diagnosis but rather the increased likelihood or predisposition due to genetic mutations. Discovering you carry such a gene can evoke a range of emotions. For some, it's a revelation that answers family health mysteries, while for others, it can be a disorienting mix of fear and uncertainty. But with awareness comes the power of choice and the ability to take preventive actions.

    • When faced with a hereditary cancer risk, understanding is vital. Resources like FORCE, American Cancer Society or hospital system websites like the Mayo Clinic, and Johns Hopkins are gold mines. Equip yourself with knowledge, and build a strong foundation for your health decisions. After my own diagnosis, these resources helped me tremendously.

  • Access:

    • This is two-fold: connection to vital resources and affordability…

      • Connecting to Vital Resources: The digital age has blessed us with a plethora of information, but it's vital to ensure what we consume is accurate and relevant. Utilizing the resources such as those mentioned previously, as well as those provided on prior podcasts is key.

      • But access goes beyond this. It's equally important to acknowledge the disparities in access. 42 million Americans currently lack broadband access, making it challenging for them to understand their risk or find specialized care.

      • On the flip side, It's also about being able to afford tests and treatments and understanding your insurance coverage, if you have it. Every day that I am reading posts within my online support groups, I'm reminded of the heartbreaking reality that millions of Americans are grappling with – the challenge of accessing even the most basic healthcare. While many of us are blessed to have insurance or the means to afford tests, screenings, and surgeries, there's a significant portion of our population that's left in the dark, uncertain about their health, simply because they lack these resources.

      • And for our listeners outside the U.S., while every country has its unique healthcare challenges, the emotional strain of struggling to access necessary medical care is universally heart-wrenching. The pursuit of health shouldn't be a privilege – it's a fundamental human right.

      • For those struggling financially, resources like Medicare Rights Center or the Patient Advocate Foundation can be lifelines. I will provide links to these resources in the show notes.


  • Engagement and Advocacy

    • This means actively participating in your health journey. Being Your Own Best Advocate! Your journey with a hereditary cancer gene demands proactive engagement. This means speaking up when you sense discrepancies in your care. In fact, in my experience, numerous online support groups reveal a common thread: individuals must sometimes advocate for themselves when they feel their doctors might not be fully informed about their mutation. For instance, those with Lynch Syndrome might get varied screening recommendations; while research might suggest colonoscopies every 1-2 years, a less-informed doctor might advise 3-5. For women who've undergone hysterectomies, some practitioners might incorrectly assume no need for further exams. Yet, overlooking this can risk missing cancers like those on the vaginal cuff.

    • Knowledge, coupled with assertiveness, is pivotal. If something doesn't feel right, ask, challenge, and if necessary, seek a second opinion and don’t feel bad about it. It’s not just about receiving information but actively participating in your health story. It means having those in-depth chats with your medical team—your geneticist, your primary care doctor, specialists, and more. I keep a dedicated notebook, listing recommendations, specialist details, and breaking it down by organ type. Might sound like I'm planning a heist on my own body, but hey, it’s just how I roll!


  • Agency:

    • Here’s where empowerment truly shines. Agency is about taking control, making decisions with your medical team that resonate with you. Agency, as defined in a recent article, is the sense of control in life, the capacity to influence our thoughts, behaviors, and manage diverse situations. A significant factor here is understanding that we have much more power than we believe. As Albert Bandura, a renowned psychologist, pointed out, we aren’t merely products of our circumstances but producers of them. This means you have the power to influence how you respond to and manage your hereditary risks. It's not just about being informed but using that information to steer your health journey. I’ve covered examples of managing the risk in prior episodes but we will dive more into specific ways to manage your risk through medical and non-medical ways.

Spiritual & Community Support:

Now, this is not one of the core pillars from the eHealth ERA project but here's a perspective that's close to my heart - Spiritual & Community Support. This is about finding strength in unity and reflection. While everyone's spiritual journey is personal, research underscores the potential benefits of faith and spirituality in managing health challenges. Being part of a spiritual or religious community can provide solace and reduce stress. Moreover, practices like prayer and reflection can offer individuals a sense of command, better equipping them to handle anxiety or depression stemming from their health concerns. One a personal level, I shared my own experience on Episode 4 if you’d like to hear more on this topic.


Before we wrap up, let’s revisit the four pillar with a call to action for you to take away today:


  • Information & Awareness:

    • Dedicate time to learn more about your specific mutation and its implications from trusted sources like FORCE, the American Cancer Society, Mayo Clinic, and Johns Hopkins. YOUR ACTIONS: Spend 10 minutes daily reading up on relevant articles or journals or find relevant podcasts that speak to experiences, stories or the latest findings related to hereditary cancer.

  • Access:

    • Explore all available resources – be it online, within your community, or through medical institutions. YOUR ACTIONS: If you are struggling with access to broadband - try your local library and then advocate for more access in your community. Make a list of all the tools and resources available to you. If there's a financial barrier, explore organizations that can assist.

  • Engagement and Advocacy:

    • This involves active participation. Remember, your voice matters. Always ask questions, demand clarity, and advocate for your health. YOUR ACTION: Engage with your medical team, document recommendations, and stay organized. Maintain a health diary to keep track of appointments, recommendations, and even personal reflections.

  • Agency:

    • This is your sense of control. Remember, as Albert Bandura highlighted, we aren't just products of our circumstances but can actively shape them. YOUR ACTIONS: Reflect weekly on your health decisions. Celebrate your wins, no matter how small, and adjust strategies when needed.

Conclusion:

So, dear listeners, empowerment in the context of hereditary risks isn't a huge, solitary leap or grand gestures. It's embedded in our everyday choices, the deliberate steps we take to arm ourselves with knowledge, to actively engage with our health professionals, and to trust in our agency to make the best decisions for our wellbeing. It's about turning moments of vulnerability, like the discovery of a mutation or an unfamiliar medical term, into a collaborative journey of understanding and growth.


The path might indeed be winding and sometimes uphill, but with every informed choice, you're etching a journey that's genuinely your own. Resources, as we've discussed today, serve as guiding stars, with faith offering additional strength for many.


And as we close today, remember this: while the journey is uniquely yours, you're not treading this path alone. Each step you take is buoyed by the support of resources, loved ones, and an empathetic community that understands and respects your choices.


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


Links referenced in this episode:


References:

  • Jiang, F., Liu, Y., Hu, J., & Chen, X. (2022). “Understanding Health Empowerment." Journal of Medical Internet Research, 24(1), e27178.

  • Sindhu, T. Why patient empowerment matters. Wolters Kluwer. "Take Control of Your Life: The Concept of Agency and Its Four Helpers."

  • “Religion, Spirituality, and Health: The Research and Clinical Implications”, Harold G. Koenig - Published 16 Dec 2012 - https://www.hindawi.com/journals/isrn/2012/278730/#B2

  • “Science Says: Religion Is Good For Your Health”, Nicole F. Roberts, March 2019; https://www.forbes.com/sites/nicolefisher/2019/03/29/science-says-religion-is-good-for-your-health/?sh=3871b4d53a12

  • “Millions Of Americans Are Still Missing Out On Broadband Access And Leaving Money On The Table—Here’s Why”, Forbes, Natalie Campisi, March 2023; https://www.forbes.com/advisor/personal-finance/millions-lack-broadband-access


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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