Before We Go: Knowledge is Power

Podcast Nation | Host: Dr. Shoshana Ungerleider
Episode: "Knowledge is Power"

1. Introduction: A Family's Battle with Cancer

In the fifth episode of Before We Go, Dr. Shoshana Ungerleider shares her deeply personal journey following her father's diagnosis with stage four pancreatic cancer in the summer of 2022. The revelation that his cancer was linked to a BRCA2 mutation not only offered hope for effective treatment but also posed a genetic risk to Shoshana and her sister, Arielle.

Dr. Shoshana Ungerleiter [00:06]: "The summer of 2022 was a whirlwind... We were given hope when we learned that his cancer was related to a BRCA2 mutation... But that also meant that my sister and I needed to get tested because we might also be at risk."

2. Navigating the Diagnosis Amidst a Pandemic

Recording the episode with her co-host Tracy Wheeler amidst the COVID-19 pandemic added another layer of complexity. The constraints of social distancing and the emotional toll of the pandemic environment underscored the challenges Shoshana faced while balancing her professional responsibilities and her father's declining health.

Tracy Wheeler [02:01]: "Covid was happening in the midst of all of this... you know, we couldn't forget that that was the other swirl."

3. Understanding BRCA Mutations Beyond Breast and Ovarian Cancer

A significant portion of the episode delves into the broader implications of BRCA mutations. While commonly associated with breast and ovarian cancers, BRCA mutations also elevate the risk for pancreatic, prostate, and even melanoma cancers. This revelation was eye-opening for both Shoshana and Tracy, highlighting the pervasive impact of genetic factors beyond the commonly known associations.

Dr. Shoshana Ungerleiter [02:28]: "BRCA actually stands for breast cancer gene, but it is associated with so many other cancers, including pancreatic, prostate cancer, even melanoma."

4. The Role of Genetic Counseling: Insights from Deana Goldberg

Shoshana introduces Deana Goldberg, a board-certified genetic counselor, who plays a pivotal role in guiding her and her sister through the complexities of genetic testing. Deana emphasizes the importance of understanding one's genetic risks and advocates for broader access to genetic counseling services.

Deana Goldberg [09:15]: "Everyone's opinion in this field is going to differ... but if you think about it from an individual level... genetic testing is going for the future."

5. Personal Journeys: Shoshana and Arielle's Decisions

Both Shoshana and her sister Arielle decided to undergo genetic testing following their father's diagnosis. Their experiences highlight the emotional and practical considerations involved in making preventative health decisions.

• Shoshana's Proactive Approach: Shoshana immediately took actionable steps after receiving her positive BRCA2 result. Her decisive nature led her to schedule preventative surgeries swiftly, aiming to mitigate her cancer risks.

  Dr. Shoshana Ungerleiter [17:20]: "I felt empowered that now I had information at my fingertips to be able to make decisions."

• Arielle's Reflective Decision-Making: Arielle's journey was marked by a thorough consideration of her personal and professional life. Initially hesitant to share her results publicly due to her role in local government, she ultimately embraced advocacy to educate others about genetic testing.

  Arielle [26:44]: "It was worth becoming an advocate about it."

6. The Emotional Toll of Preventative Surgeries

Both sisters underwent surgeries to reduce their cancer risks, leading to significant physical and emotional changes. The removal of ovaries, fallopian tubes, and breasts necessitated not only physical recovery but also adjustments to their hormonal balances.

Arielle [30:29]: "No one told me that I was going to immediately turn into a psychopath with crazy hot flashes and mood swings."

Dr. Shoshana discusses the ongoing debate within the medical community regarding hormone replacement therapy (HRT) post-surgery, underscoring the need for personalized medical decisions.

Dr. Shoshana Ungerleiter [31:08]: "The medical system doesn't agree about using hormone therapy or HRT to manage those symptoms."

7. Advocacy and Raising Awareness

Turning a personal crisis into a mission, Shoshana and Arielle have become vocal advocates for genetic testing and early cancer detection. Their efforts include writing articles for prominent publications and participating in discussions to educate the public about the importance of genetic awareness.

Tracy Wheeler [27:44]: "What I witnessed was you, as always, really doing everything you could to understand... how you could help other people be better prepared."

Shoshana reflects on the silver linings of her father's diagnosis, noting that without it, she might never have pursued genetic testing herself.

Dr. Shoshana Ungerleiter [28:11]: "Had my dad not gotten pancreatic cancer, who knows if I would have been tested?"

8. Looking Ahead: Hope and Continued Advocacy

As the episode concludes, Shoshana hints at future discussions surrounding the management of hormone therapy post-surgery, promising a nuanced exploration of individual risk factors and treatment options.

Dr. Shoshana Ungerleiter [31:31]: "Let's look at your individual risk factors, and then you make a decision what you want for your body."

Conclusion

"Knowledge is Power" serves as a poignant exploration of how genetic information can shape personal health decisions and advocacy efforts. Through candid conversations and shared experiences, Dr. Shoshana Ungerleider and her sister Arielle illuminate the profound impact of genetic testing on individuals and families, ultimately fostering a broader conversation about mortality, prevention, and empowerment.

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