Knowledge is Power

Summary

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.

---

Connect with Before We Go:
Join the conversation and see behind the scenes on Instagram @beforewegopodcast.

Transcript

[Dr. Shoshana Ungerleiter]

The summer of 2022 was a whirlwind. It started with my father's first call telling me about the mass in his pancreas. After a few weeks of testing, we were told that his cancer was stage four, which meant it had spread to his liver and would almost definitely kill him. We were given hope when we learned that his cancer was related to a BRCA2 mutation, meaning that new treatments might give him many months, if not years, of good life. But that also meant that my sister and I needed to get tested because we might also be at risk. It was a lot. Through all of this, I was doing my best to stay on top of my many jobs, including hosting a podcast for endwell. My friend and longtime endwell colleague Tracy Wheeler was the co host.

[Tracy Wheeler]

We were in a real recording studio in a very rural spot, which was incredibly beautiful to drive to. And I remember driving west, and it was a gorgeous day, and, you know, we didn't script it.

[Dr. Shoshana Ungerleiter]

Tracy and I sat down to record a conversation about everything that was going on with my dad and my own decision to get genetic testing. So Tracy and I have a special episode today that's actually really personal to me. It's about my father's recent diagnosis with stage 4 pancreatic cancer and what my family and I are learning in this process that I hope will maybe be helpful to other people.

[Tracy Wheeler]

And how's he doing?

[Dr. Shoshana Ungerleiter]

You know, every day is a little different. He is undergoing chemotherapy. He certainly has cancer and will for the rest of his life. And it's heavy physically and emotionally for him and the organization.

[Tracy Wheeler]

By the way, everybody. Covid was happening in the midst of all of this, you know, so there was also that. And how do you keep people safe? Can we even sit 18 inches across from each other and do a podcast at the same time? You're going to be going home and taking care of your dad. And, you know, I don't think we can forget that that was the other swirl.

[Dr. Shoshana Ungerleiter]

It was a good thing for him. It mean that he'd be eligible for this kind of treatment.

[Tracy Wheeler]

Wow. So brca. I mean, I've been reading about BRCA because it's so associated with ovarian cancer and breast cancer, and I have a friend with ovarian cancer, so I know about that, but I had no idea that it was these other cancers, too.

[Dr. Shoshana Ungerleiter]

I didn't either. So BRCA actually stands for breast cancer gene, brca, but it actually is associated with so many other cancers, including pancreatic, prostate cancer, even melanoma.

[Tracy Wheeler]

And those are some of the ones that run in your family.

[Dr. Shoshana Ungerleiter]

Yeah. Yeah, that's right.

[Tracy Wheeler]

And it was so real. And I think that on a, like, a visceral, deep level, that's when I really felt what you were going through as opposed to knowing it. Sort of a question for you as both a doctor and a daughter, which is, he must kind of be different from moment to moment as he grapples with all of this. Right. There's a moment when I asked you to think about how hard this must be for him, you know, as you lose your relationship to who you think you are. And you really took a moment and deeply considered that. I mean, I might be making that up, but it just. I know that's how I would be.

[Dr. Shoshana Ungerleiter]

Huh. I haven't really thought about it in that way. And maybe I need to. When he's having a tough day or he gets down on himself, I need to maybe cut him some slack and think about it in that way of identity. And who we are in this moment, in this day really changes with this kind of a situation, I think so.

[Tracy Wheeler]

I mean. I mean, I'm not telling you what to do with your father, but this is helpful.

[Dr. Shoshana Ungerleiter]

It was helpful. Conversations with Tracy almost always are, and.

[Tracy Wheeler]

I loved you for taking that beat and really thinking about it. It was really emotional.

[Dr. Shoshana Ungerleiter]

But I had another reason for wanting to talk about my story on the endwell podcast. I wanted to get the word out about genetic testing.

[Tracy Wheeler]

The surprise and shock and, I think, horror you felt when you realized that you had been medically trained and didn't know that BRCA is associated with so many other cancers, cancers that ran in your family and cancers that many, many, many families have in their families, and that if you didn't know this, it was suddenly a moral obligation for you to get that out there, and you were going to do it any way possible. That not telling people would have been a harm, you know, and that would have been a sin of omission.

[Dr. Shoshana Ungerleiter]

I'm Dr. Shoshana Ungerleiter, and this is Before We Go. Episode five, knowledge is power. The holidays are just around the corner, and let's face it, the colder weather, the heaters cranking up indoors, and all those festivities can leave our skin looking dull and feeling dry. That's why I've been so grateful for one skin. Their products are truly different. They go beyond the surface. This means healthier, more resilient skin. And let me tell you, my skin has never looked this vibrant, even in the middle of holiday prep chaos. What I love most is how well, their OS1 product works. I've been using it on my face and it's really helped me see a glow I didn't expect, like a boost of vitality from the inside out. My skin feels stronger and just healthier. And with over 6,300 five star reviews, I'm not the only one impressed by these results. Since I started using it, I really see and feel the difference. Oneskin is the world's first skin longevity company. One Skin addresses skin health at the molecular level, targeting the root causes of aging so skin behaves, feels and appears younger. It's time to get started with your new face, eye and body routine at a discounted rate today. Get 15% off with code before we go at oneskin co. That's 15% off oneskin co with code before we go. After your purchase, they'll ask where you heard about them. Please support our show and tell them we sent you we only have one body, one skin and only you can choose to make it better. Age Healthy with one Skin hey there, it's Shoshana. I'd love for you to join me for this year's EndWell forum on November 22nd. It's streaming live and it's free to register. EndWell is a one of a kind gathering that's all about inspiration, connection and finding new ways to live fully, even in the face of life's biggest challenges. This isn't just an event about end of life, it's about affirming what matters most and how we all live. You'll hear from actors, artists, authors, healthcare innovators and spiritual leaders all sharing heartfelt stories and perspectives that lift us up and invite us to rethink how we connect, love and leave a lasting impact. For those who join, this experience is often life changing. Past participants have left inspired with new ideas, deep connections, and a sense of purpose that they've carried back into their lives and communities. So if you're looking for something meaningful that reminds you what's possible, register now for the free [e-mail] I'd love for you to be a part of it. After I learned my dad was positive for a BRCA mutation, I felt that I needed to get tested. I was lucky to have someone I was able to call right away. My friend Dina, who's a genetic counselor, immediately like flipped into professional mode and said, well, absolutely. Let's get an appointment on the books and we will go over, you know, your comprehensive family history to find out what tests you really need to be looking at. Including brca.

[Deana Goldberg]

My name is Deana Goldberg. I'm a board certified genetic counselor. So I like to tell people that my job is to help people understand their risk for disease and how to get ahead of that risk. My focus is on cancer genetics, but there's also prenatal genetics, which is what most people think of when they think of genetic counseling. There's fertility genetics, there's pediatric genetics, neurology, psychiatric cardio. So there's all these different specialties that genetic counseling can be part of.

[Dr. Shoshana Ungerleiter]

And what initially drew you to it?

[Deana Goldberg]

I actually have a little sister with a chromosome abnormality and my parents are both doctors. Being a sibling of someone with special needs, especially someone with a genetic disorder, really got me interested from a really young age. And then as I got older, this path took me to genetic counseling.

[Dr. Shoshana Ungerleiter]

Deena believes that if someone wants to know what their genetics can tell them about their current and future health, then they should be able to get tested.

[Deana Goldberg]

Everyone's opinion in this field is going to differ, right? If you go by what insurance guidelines say and what some other medical professionals say, they may say that really it's only cost effective for people who have a family history.

[Dr. Shoshana Ungerleiter]

Right.

[Deana Goldberg]

Because if we think about the strain on the healthcare system, we don't really have the capability to see every single person at this point in time. But if you think about it from an individual level and the way that I think it's going, genetic testing is going for the future. I do think it's going to be even more integrated in care to where everybody will hopefully be offered it to really get ahead of their health risks.

[Dr. Shoshana Ungerleiter]

And Dena is also really passionate about getting the word out about genetic testing and counseling.

[Deana Goldberg]

It was mostly because I was so sick of people not understanding what opportunities were available to them, especially since a lot of them are life saving and life changing opportunities to do genetic testing. And people just don't know. I've had so many people tell me that they go to their doctors or like family members of my patients that went to their doctor and the doctor said, oh, you don't need this. And it's like, why? What do you think this is? It's so upsetting. So I always tell people on social media that you should be your own advocate.

[Dr. Shoshana Ungerleiter]

I am pretty shocked at how few physicians, even young physicians, people like me who have trained in the last 10 to 12 years, like, don't realize that genetic testing is so accessible so, you know, affordable and really actionable. There's, there's far too many people that for so Many reasons don't have access to testing. Who could benefit from it, either because of, you know, cost or lack of knowledge or something. I just feel like we have a responsibility to help.

[Deana Goldberg]

That's my ultimate hope, is that it becomes more equitable, because right now, unfortunately, it's not. There's a lot of disparities, and there are different groups that are much more likely to get to a genetic counselor. And sometimes it's perceived as a luxury service, and it's not, you know, it's available to everybody. It's covered for the most part, and if not, there's financial aid available. So I'm hoping that the future of genetic counseling involves a lot more access to genetic counselors and to genetic tests.

[Dr. Shoshana Ungerleiter]

Dina also happens to be Jewish and has done a lot of work to educate the Jewish community about genetic testing. BRCA and other genetic mutations are really prevalent among Ashkenazi Jews because of genetic bottlenecking and founder effects. Other groups of people, such as the black community and French Canadians, also tend to have higher rates of this genetic mutation. By the time I sat down with Deana to discuss genetic counseling, my father's test had already come back positive for a BRCA2 mutation. But that's not the only mutation that Deana recommended I get tested for. She tested me for a whole panel of cancer genes. I knew about genetic counseling, of course, had never had a consultation myself, and it is incredibly in depth.

[Deana Goldberg]

I knew that you were probably at 50% risk. And, you know, honestly, I also knew that you are somebody who has such a strong and powerful voice that whatever was going to happen, you were going to. I had an idea you were going to share your story, and it was going to help a lot of people. So that added an extra layer, not only because, you know, we're friends and I could help you, but because I knew that you were going to be somebody that was going to make a difference with whatever your story ended up being. So, you know, I was very happy to help you and your family.

[Dr. Shoshana Ungerleiter]

Dina reached out as soon as she got my results. I was actually at my husband's sister's wedding, her wedding weekend. We were traveling, and she was like, hey, maybe have your husband join you and we can talk through some of this. We sit down in front of the zoom in the hotel room. We have the computer on the coffee table. What do you remember Dina, the genetic counselor, saying? And what did we say?

[Ed]

Um, that call was the first time for me that it changed from being abstract bad news to you could get very sick and die.

[Dr. Shoshana Ungerleiter]

I remember Dina's voice being calm and clear. She said, your test came back positive for a BRCA2 mutation. And then she walked Ed and I through the data of what that diagnosis might mean for my future health.

[Ed]

I remember in the call it being like a parade of bad news, not horrible news. People have worse calls than this. But I came into it thinking about brca, and I know that the success rate in breast cancer, there is one. Right. And as we went through the presentation, it was like one thing after another of new things to be afraid about that I'd not been afraid about, and I was now suddenly, like, specifically afraid of them.

[Dr. Shoshana Ungerleiter]

I don't think I realized it at the time that you were so scared. And it totally makes sense. I was so relieved to have the information because it was actionable information, but I totally see where you were coming from.

[Ed]

Well, I am a very quantitative person, and your genetic counselor showed us very clear graphs and very clear data that I looked at and was just scared to death. Like, I knew in the abstract how this worked, but then to actually be like, here's where you are. Here's what your likelihood of getting this type of cancer is. Next slide. Here's your likelihood of getting this other type of cancer. Next slide. Another horrible cancer. And the numbers were not low, right? That was. Yeah, it was very intense.

[Dr. Shoshana Ungerleiter]

Dina says that when she's counseling a couple like Ed and I, it's not unusual for them to react differently.

[Deana Goldberg]

You know, there's so many ways to cope with bad news. And so I think that your coping strategy was just, like, get on top of it and to have information, and you understand more than most people that knowledge is power. Then I think that your husband may have had more, like, may have shown more emotion than you did, or at least anxiety.

[Dr. Shoshana Ungerleiter]

Yes. That's definitely on brand for Ed. Yeah.

[Deana Goldberg]

And that's actually really common, is when I give results, you know, to a couple, a lot of times that happens where the partner is more concerned than the actual person. And so there's a whole dynamic there, too, you know?

[Dr. Shoshana Ungerleiter]

Oh, yeah.

[Ed]

I knew this was your call. Like, it was for you, and you invited me to be on it. But there were so many places that I needed to ask questions, and I felt bad about that, but I also was just so. I was learning so much because BRCA wasn't just breast cancer.

[Dr. Shoshana Ungerleiter]

As soon as the call with Dina was over, I knew what I needed to do. I was shocked for about two minutes, and then I immediately just jumped into, like, what's next? How am I going to manage this? What am I going to do? How do I get the right team in place to figure this out? And I, because I had always thought that cancer would happen to me, I felt, I'm trying to think of the right word because it's not excited. I felt empowered that now I had information at my fingertips to be able to make decisions. I'm an action oriented person. So basically within 30 minutes, I had my surgery consultation scheduled. There was no question in my mind that I needed to have a preventative mastectomy to have my ovaries and fallopian tubes out. For me, the idea of just waiting to possibly get cancer, given those increased risks, just didn't work. And I just want to point out, you know, not everybody has to have surgery. These are options. There are ways to do screening for breast cancer more aggressively, doing MRIs more often, mammograms. Usually they do recommend having your ovaries and your fallopian tubes out after, you know, childbearing years. But my feeling was I knew I didn't want children. That was never part of our plan. And that for me to wait and just hope that I didn't get cancer, to me seemed crazy, crazy for me. Other people have other ways of thinking about that.

[Ed]

And I was not surprised at all that you were going to immediately start looking into what to do and you have a network of people to talk to. I knew you'd talk to those people. I did not realize that you were ready to go. Like you got the information and you're like, let's go now.

[Dr. Shoshana Ungerleiter]

Within a day or so, I had already spoken to the plastic surgeon who had come highly recommended to me who would do the reconstruction, the breast reconstruction. And then I'd spoken to the gynecologic oncologist who would do the preventative laparoscopic removal of my fallopian tubes and ovaries. And we got it scheduled. You're listening to before we go. I'm Dr. Shoshana Ungerleiter. We'll be right back. Botox Cosmetic adabatulinum toxin. A FDA approved for over 20 years.

[Tracy Wheeler]

So talk to your specialist to see.

[Dr. Shoshana Ungerleiter]

If Botox Cosmetic is right for you.

[Ed]

For full prescribing information, including boxed warning, visit botoxcosmetic.com or call 877-351-0300.

[Dr. Shoshana Ungerleiter]

Remember to ask for Botox Cosmetic by name. To see for yourself and learn more, visit botoxcosmetic.com that's botoxcosmetic.com this episode is brought to you By Allstate.

[Ed]

Some people just know they could save.

[Dr. Shoshana Ungerleiter]

Hundreds on car insurance by checking Allstate First. Like, you know, to check the date of the big game first before you accidentally buy tickets on your 20th wedding anniversary and have to spend the next 20 years of your mar making up for it. Yeah, checking first is smart. So check Allstate first for a quote that could save you hundreds. You're in good hands with Allstate Savings.

[Ed]

Vary terms apply.

[Dr. Shoshana Ungerleiter]

Allstate Fire and Casualty Insurance Company and Affiliates, Northbrook, Illinois. My sister Arielle also decided to get tested right away.

[Arielle]

I've always kind of been of the knowledge is power mindset. Like, you may choose to not do anything about it, but at least you'll know. So it never really crossed my mind to not get tested. And in fact, that whole I'd rather not know population, I didn't even know those people existed until I. Till I started talking to people about how easy it is to get tested. And, you know, you just spit in a tube and you FedEx it in, and it's inexpensive, and it allows you to have access to, like, more screening. And then those same people who didn't want to do the genetic tests were like, oh, yeah, I don't want to get screened for breast cancer either. Like, I'd just rather not know. I'm like, oh, okay, what is that? But I guess there's a lot of people out there like that.

[Dr. Shoshana Ungerleiter]

Arielle also got her results from Dina, but it was a much more emotional conversation than the one Dina had with Ed and me. For one, Arielle and I are two very different people. But also, she tested positive for two genetic mutations, BRCA2 and another one that runs in our family.

[Arielle]

We were on a zoom. And I could tell, like, just from the outset, and. And I had my husband on the zoom sitting next to me with, you know, sitting with us. And I'm glad I did, because I don't think I was. I don't think I was really prepared just given the fact that, like, there's no history of breast cancer in our family. So I just assume that, like, we didn't have it. But I remember just being really sad and kind of, like, overwhelmed with information.

[Dr. Shoshana Ungerleiter]

Yeah.

[Arielle]

But then it being kind of, like, pretty clear, you know, she just walked through my risk profiles for ovarian cancer, breast cancer, skin cancer, and the, you know, the different kind of percentages, and it was more of just kind of. It became a probability in a math game. And she said, look, you don't have to do anything with this information, it's just, you know, to help you. I had never had a mammogram, and she said, and also, you might want to consider, you know, the biggest concern is ovarian cancer, because you can't detect it super early.

[Dr. Shoshana Ungerleiter]

Ariel and I knew how scary a gynecological cancer diagnosis could be. Ten years earlier, our mother had had uterine cancer, which wasn't related to an inherited mutation. And we'd watched her go through surgery, chemo, and radiation. Thankfully, she was cured of her cancer, but the idea that it could come back in the future haunted all of us.

[Arielle]

She's like, I don't think you're going to die from breast cancer, but you certainly want to think about potentially your risk with ovarian cancer and think about, you know, if you want to have more kids or if you're definitely done having kids.

[Dr. Shoshana Ungerleiter]

And I looked.

[Arielle]

Tim and I looked at each other, and we had just come off this, like, crazy raft with our two. I mean, our two lovely kids. We were like, we're definitely not having more kids. We cannot. There is no more capacity in our lives for this nonsense. So we were like, no, no, we're good. We have two lovely kids, and we're, like, you know, kicking each other under the table. And so I think then I started thinking more seriously about ovarian cancer risk and, you know, whether I wanted proactive surgery to remove that risk.

[Dr. Shoshana Ungerleiter]

And while Arielle and I are two very different people, we both came to the same conclusion when it came to whether we would have preventative surgery.

[Arielle]

I ultimately decided, yes, I wanted to move forward with removing my ovaries, uterus, fallopian tubes. As I was sitting with the information and learning more about how minimally invasive the surgery would be, you know, not a crazy recovery, and that it would reduce my risk down to basically zero. And the flip side of that of feeling also like I had a ticking time bomb inside of me, it just felt like it was an obvious decision to arrive at.

[Dr. Shoshana Ungerleiter]

But unlike me, Arielle didn't immediately schedule a preventative double mastectomy.

[Arielle]

I have just a very different relationship with my breasts than I do with, like, organs that I don't see every day. And I've always had kind of a hesitation around getting implants. Like, the idea of implants, to me is never something that I wanted to do. So I really felt strongly that I wanted to do a double mastectomy and reconstruction with my own tissue, and that that would mean finding a plastic surgeon that I felt really comfortable with.

[Dr. Shoshana Ungerleiter]

And unlike me, Arielle didn't feel comfortable sharing the results of her genetic tests or the reason she was having surgery more publicly, at least not at first. Arielle was an elected official on the city council in Healdsburg, the small town where she and my father both lived. And she'd just learned the exciting news that she was being appointed mayor by her peers.

[Arielle]

And I was worried that going into my mayorship, that it would be perceived as a sign of weakness if I talked about having high risk for cancer, that the public might not have faith in me as a leader if my health was potentially going to be in jeopardy.

[Dr. Shoshana Ungerleiter]

And did that change at all for you?

[Arielle]

It did, because as soon as I started talking to people about early detection and testing and realizing how little information folks had, just the opportunity to educate and inform and having a platform to do that, I felt like was worth the risk of, you know, whatever the risk was, which I also found, felt, you know, eventually was kind of a little unfounded, but that it was important enough to talk about, and there's enough people in the world who really can reduce their risk if they're informed and have the ability to navigate through it. That it was. It was worth becoming an advocate about it.

[Dr. Shoshana Ungerleiter]

To no one's surprise, I immediately started talking about my diagnosis. I felt like I had to. I wrote an article for Newsweek, and Arielle and I were both featured in the Wall Street Journal. And then there was that podcast I recorded with Tracy.

[Tracy Wheeler]

What I witnessed was you, as always, really doing everything you could to understand everything about it and understand how this information that was so shocking to you as a physician, that pancreatic cancer is associated with the BRCA gene, you know, what could you do to help other people be better prepared and understand when this pops up in one family member?

[Dr. Shoshana Ungerleiter]

Yeah, I think for me to make sense of it, I had to, like, there had to be, like, a reason why I was going through it. And so for me, it was about trying to turn, you know, this experience into something that helps other people. I think I said this from the very beginning, but I'm just so grateful to have this mutation because now I know my risk. There's actual data and numbers associated with, you know, if I were to make this decision, what might my chances be of getting cancer and the fact that I could intervene and do something about it? You know, I think with my family history being so significant, full of cancer, I always just assumed that I would get some kind of cancer in my lifetime. So I was almost just waiting for something bad to happen to me, and because there are things you can do with a BRCA mutation to be able to mitigate that risk. I just found that to be obviously life changing and life saving. And had my dad not gotten pancreatic cancer, who knows if I would have been tested? But while there was a silver lining to all of this, the truth was that my dad was very ill and he was getting sicker. It was a little hard to think about having surgery at the time that my dad was getting so sick, but I could just feel it. I knew that this was the right thing for me and what I had to do. I scheduled my first surgery for September. Statistically speaking, the chances of me getting cancer in that year were pretty low, but still there. And I am not somebody that sits well with uncertainty. And as it turns out, my dad's illness didn't stop Arielle from pursuing treatment either. A month after I had preventative surgery to reduce my risk of ovarian cancer, she had hers.

[Arielle]

I didn't want to wait. I just, like. It just felt like he was on this course of treatment that was this, you know, roller coaster of, like, some weeks he would get treatment, some weeks he wouldn't. I met a surgeon that I liked, and I was interested in working with him, and we had a path forward, so we did it.

[Dr. Shoshana Ungerleiter]

But there was one thing that neither of us spent enough time considering. The ovaries produce important hormones. And bouncing back after surgery that took away almost all of the estrogen from our bodies wasn't as simple as we expected.

[Arielle]

No one told me that I was going to immediately turn into a psychopath of, like, crazy hot flashes and mood swings and night sweats and brain fog.

[Dr. Shoshana Ungerleiter]

And the medical community doesn't agree about using hormone therapy or HRT to manage those symptoms. As a women's health expert, do you hear this sort of story a lot from people?

[Arielle]

I mean, this is my world now. So all the time, it's really easier.

[Dr. Shoshana Ungerleiter]

For the medical system to say, hrt is bad.

[Arielle]

Don't take it.

[Dr. Shoshana Ungerleiter]

Instead of having this nuanced conversation around.

[Arielle]

Well, you're really low risk.

[Dr. Shoshana Ungerleiter]

Formulation matters. We have these newer drugs out. We know that you'll probably live a longer, healthier life with hormone therapy.

[Arielle]

But let's look at your individual risk factors, and then you make a decision what you want for your body.

[Dr. Shoshana Ungerleiter]

That's next time on Before We Go. Before We Go is a production of Podcast Nation and Me. Our production team includes Karen Given, Abby Williams, and Madison Britt. Our story editor is Lacy Roberts. Original music by Edward Aten. I'm Dr. Shoshana Ungerleiter, and if you like what you've heard, please tell a friend. You can also leave us a review on your favorite podcast app. It helps people who need us find the show. And if you'd like to see photos and videos and connect with other Before We Go listeners, visit us on Instagram at Before We Go Podcast.