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The Positive Gene Podcast - Ep #6: “5 Ways to Support Loved Ones Through Hereditary Cancer Choices"

Updated: Nov 21, 2023


The Positive Gene Podcast - Ep.6 Transcript


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




My BFF's that know me all too well! We've been through so much together, even some of these difficult conversations and I am so thankful for their love and support!

Hello everyone! Welcome back to another episode.


If you've ever felt trapped in a conversation about a medical decision you made, or if you've accidentally made someone feel that way, today's episode is for you. We're diving deep into the world of hereditary cancer mutations, the difficult decisions they often come with, and how to support or be supported during those tough conversations.


Picture this: You find out you have a hereditary cancer mutation, like BRCA1, and after much consideration, research, and medical consultation, you decide on preventative surgery. It's a deeply personal, well-thought-out choice, but then you get comments like "Are you sure?", "Isn't that extreme?", or the baffling "Why don't you just enjoy your life while you're healthy?"


Ivy (not her real name to protect her identity), a 50-year-old BRCA1 mutation carrier, shared her own experience in one of my support groups and has given permission to share her story. After deciding to undergo a double mastectomy, she started receiving unsolicited opinions from extended family members - from questioning the extremity of her choice to suggesting she should "wait until she actually gets sick."


I get it. Medical choices, especially ones as significant as a preventative or risk-reduction surgery, can be hard for outsiders (those without a hereditary cancer risk) to understand. But remember, these decisions aren't made lightly.


In fact, as I shared on a prior episode, I’ve faced my own experience with making the difficult decision to have a risk-reduction surgery. With my Lynch variant, MSH6, and a family history with reproductive cancer, I had up to a 49% increased risk for endometrial cancer and up to a 13% risk for ovarian cancer!


Okay, as someone already dealing with health anxiety for most of my life, the thought of carrying the weight of “what it” seemed too difficult to bear. So I decided to proceed with a prophylactic hysterectomy and bilateral salpingo-oophorectomy (aka hysterectomy + BSO), giving me peace of mind that I have significantly reduced my risk of getting a reproductive cancer in my lifetime.


It's crucial for friends and family to remember that while they may not fully grasp the intricacies of these decisions, their role is to offer unwavering support. Listening actively, educating themselves, and prioritizing kindness and respect can make a world of difference for someone navigating such challenging decisions.


So, how can we navigate these conversations, both as the person making the decision and the well-meaning friend or family member?


Today we will discuss five specific ways family and friends can offer support… Much of this is backed by the sentiments shared by FORCE and the American Cancer Society.

  1. Understand the Why.

  2. Listen More, Speak Less.

  3. Educate Yourself.

  4. Kindness Over Curiosity.

  5. Respect is Key.


1. Understand the Why: Before giving any opinion, it's essential to understand why someone might choose a preventative surgery. Hereditary mutations can significantly increase the risk of developing certain cancers, and for some, like Ivy, there's also the trauma of watching a loved one suffer so their “why” has emotional significance. Here are examples of ways you may need to show support:

  • Supporting through Devastating Family History: Recognize the emotional toll of watching loved ones suffer. Engage in genuine conversations to understand their fears and reasons better.

  • Supporting through a Prior Cancer Battle: Realize that survivors may not want to face that battle again. Listen to their experiences.

  • Supporting against the Anxiety: Empathize with the anxiety of living with a ticking time bomb. Show patience and be a sounding board for their concerns.

Supportive Response: “The weight of your family's health history must be so challenging. You're brave for considering all options for your health.”


2. Listen More, Speak Less: This one's simple but crucial. Sometimes, someone sharing their decision isn't looking for advice. They just want to be heard. As a listener, your role might just be to say, "I'm here for you.”

As Ivy shared, family's well-meaning comments often seeded doubt. It's essential to recognize the power of our words, especially when someone is already emotionally vulnerable. They’ve just been given the worst news and may simply need a sounding board. If you’re like me, you want to help someone with a solution but know that this is a decision they may need time to process.

In fact, my poor husband had to hear me “thinking out loud” for weeks as I contemplated my decision. Thankfully, after over 13 years of marriage, he knows how to respond (most of time) and gave me the assurance that whatever decision I made was going to be the right one.

So, what can you do when a friend or family member facing this risk wants to talk about their options?

  • For Family Health Discussions: Listen actively and without judgment when they discuss their health history and genetic testing results.

  • For Surgery Decisions: Offer emotional support, avoiding unsolicited advice.


Supportive Response: "I'm sorry you're facing this difficult decision. How can I help?" or "Tell me more about it, and I'm here to listen.”


3. Educate Yourself: If you're having trouble understanding why someone might opt for surgery, do some research. Organizations like FORCE at facingourrisk.org and the American Cancer Society at cancer.org offer valuable insights into hereditary cancer mutations and the choices that come with them.


The journey of hereditary mutations is intricate, from the initial discovery, the emotional weight, potential surgeries, and even the aftermath of these choices.


The choice between preventive surgery and constant surveillance is hard. Dr. Allison W. Kurian, MD (Professor of Medicine and of Epidemiology and Population Health at Stanford University Medical Center and a Cancer.Net Specialty Editor for Breast Cancer), states: “People who inherit a BRCA1 or BRCA2 mutation have the options of MRI-based breast screening or prophylactic mastectomy to manage their cancer risks. Both are effective strategies...” Understand that both paths come from thorough research and deep contemplation.


So, what can you do to help?

  • Learn about their Genetic Mutation: Use resources like FORCE to understand the specific mutation and its implications.

  • Understand the Medical Decisions: If surgery is a consideration for them, do a bit of research on the surgery to understand what I may entail and give you ideas of how you can best support them. This will lead to more informed conversations and avoids misconceptions.

Supportive Response: “I looked up some information on your surgery to better understand what you're going through. How can we navigate this together?”


4. Kindness Over Curiosity: It's okay to have questions, but always ask yourself if this coming from a place of genuine concern for their well-being, or is it just out of curiosity?


In my case, I’d already had friends questioning why I’d even done the genetic testing in the first place, now I was considering surgery that would put me straight into menopause? It was a lot of weight to bear and for the most part, my friends and family were very supportive but having the defend yourself can be frustrating or overwhelming on top of the newly discovered genetic results.

How can you help ensure you’re coming from a place of genuine concern?

  • Avoid Being Overly Opinionated: While everyone is entitled to an opinion, it's essential to gauge when it's appropriate to share, especially on personal matters.

  • Phrase Comments Positively: Constructive, positive feedback shows support and empathy.


Supportive Responses: "Good for you for putting your health first." or "That must've been a very difficult decision to make. I'm here to support you.”


5. Respect is Key: Medical decisions are deeply personal. Whether it's deciding to undergo surgery, its timing, or even coping with post-surgery recovery, remember the road each person walks is their own. You don't have to agree, but you do have to respect.


To circle back to Ivy's story, it’s clear that these decisions come after much thought. Such decisions might be affected by various factors, like financial implications, the emotional effect on young children, or the need for caretakers post-surgery. For me, I was impacted be each of these factors - I was unable to work for several weeks, which is difficult since I have my own marketing and communications business. I also have two school aged children - seeing their mom go from active and always on-the-go to suddenly unable to carry my youngest or unable to ride bikes together was very difficult for them.


A little respect, understanding, and courtesy can indeed go a long way when we’re faced with the potential impact of these decisions.


How can you be respectful of their choice?

  • Support their Choice, Even if You Disagree: Everyone's journey is personal, and what works for one might not work for another. We all cope or even have the need to feel in control in different ways, so…

  • Offer Practical Help: Sometimes, actions speak louder than words. Offering to assist during their surgery or recovery can be a gesture of support.

Supportive Responses: “Regardless of my personal beliefs, I respect your decision and am here to help in any way I can.”


To anyone out there, like Ivy, faced with these difficult choices - know that you are brave. As someone who’s been there - Please know your decisions come from a place of strength, research, and a deep understanding of your own body.


And to the friends and family, remember this: Everyone's journey is unique. Empathy, kindness, and respect go a long way in making tough paths a bit easier to walk. We can't fully comprehend each person's journey, but we can make it a little less lonely with support and understanding.


That's all for today, folks! Sending love and strength to everyone navigating these difficult conversations. Remember, we're all in this together.


For more resources on this topic, please visit facingourrisk.org and cancer.org. Until next time, stay informed, stay compassionate, and stay positive.


Links referenced in this episode:


Copyright © 2023, Sara Kavanaugh. All rights reserved.

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