Daughter, Doctor, Patient

Summary

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Podcast Summary: Before We Go

Episode: Daughter, Doctor, Patient – November 19, 2024

Host: Dr. Shoshana Ungerleider
Producer: Podcast Nation

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Brief Overview

In this deeply personal and insightful episode, Dr. Shoshana Ungerleider shares her dual journey as a physician and a daughter when her father, Steven, is diagnosed with terminal cancer. Forced to confront both her family's intertwined medical risks (BRCA mutation) and her own vulnerability, Shoshana explains how navigating her father's care while making major preventative health decisions of her own leads to unexpected struggles, lessons, and moments of self-discovery. The conversation features anecdotes from her husband Ed, her sister Ariel, and menopause expert Dr. Mary Claire Haver, giving voice to the complexities of caregiving, boundaries, surgical menopause, and the gaps in health education for women.

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Key Discussion Points & Insights

San Francisco, Roots, and Community Care ([00:10]–[03:11])

• Ed’s Love for San Francisco:

  • Ed humorously professes his love for San Francisco's weather and the Golden Gate Bridge, even joking about pitching a 100-part podcast on the bridge ([00:15]).
  • During the pandemic, he hosted “sunset sets” – online DJ parties – to lift spirits, showing creativity and deep community ties ([00:36]).
  • "I love the Golden Gate Bridge. I love looking at it." – Ed ([00:27])
  • These sets included costumes, multiple cameras, and the now-famous “zucchini cam” ([01:27]).
  • "I went hard. I did it. I did not. Halfway. I went all the way." – Ed ([02:09])

• Sacrifice for Family:

  • Shoshana asks Ed to move from beloved San Francisco to Healdsburg to care for her father, setting up the episode's central challenge ([02:54]).
  • Ed’s reluctance is real: “We live in my favorite house on my favorite street … It was hard for me to reconcile your clarity of view … with how I felt about it.” ([04:01])

Caregiver Story: Love, Loss, and Shifting Roles ([03:12]–[07:25])

• The Move to Healdsburg:

  • Ed and Shoshana move repeatedly, staying in Airbnbs before settling in to support her father’s care ([03:22]).
  • Their friend Tracy offers a heartfelt perspective: “The number one thing Ed loves is you.” – Tracy ([04:43])

• Juggling Roles:

  • Shoshana describes the stress of being both a daughter and a doctor, foreshadowing her eventual need to set boundaries to protect her own health and emotional wellness.

Facing Genetic Risk & Medical Complexity ([07:25]–[12:03])

• BRCA Mutation and Hope:

  • The BRCA mutation in her father's cancer creates hope for new therapies, but also brings fear for Shoshana and her sister’s own health ([07:25]).

• Father–Daughter Dynamics:

  • Her father’s neediness as a patient is draining:
    • “He would call you to try to get a second opinion or maybe you were the third opinion.” – Ed ([07:31])
    • “He wanted to call me every day and tell me about his bowel movements.” – Shoshana ([08:22])
  • This leads to a boundary crisis, with Shoshana realizing that over-involvement confuses care and increases her stress.

• Drawing Boundaries:

  • Aunt Jeannie’s advice—to be a daughter, not a doctor—hits home:
    • “Jeannie was very clear that, like, it's inappropriate and it is okay for you to draw a boundary around him and his medical care … make the space or take the space to do what you need to do for you.” – Ed relaying Jeannie’s words ([10:11])

The Emotional Journey of Preventative Surgery ([12:03]–[19:32])

• Facing Surgery:

  • Despite feeling overwhelmed and guilty prioritizing herself, Shoshana decides on a laparoscopic hysterectomy and bilateral oophorectomy ([12:06]).
  • She shares voice memos of gratitude, anxiety and fear leading up to surgery – authentic moments about medical decision-making, patient vulnerability, and uncertainty.
    • “I feel so grateful that I can do something to lower my risk… but I just feel like it's a lot.” – Shoshana ([13:41])
    • “Waiting rooms just feel really heavy… I've talked to people in them as a doctor, but I haven't waited in one as a patient…” – Shoshana ([16:46])

• Surgical Menopause:

  • After surgery, Shoshana describes sudden surgical menopause, including debilitating hot flashes and night sweats.
    • “It meant that over just a week or two, my body had undergone a change that usually takes a decade or more.” – Shoshana ([17:12])
    • Humorous coping: "I would put ice packs, like, in the back of my pants." – Shoshana ([18:10])

• Normalizing Menopause:

  • Shoshana makes menopause visible, including anecdotes like asking a waiter for ice at a fancy dinner ([18:50]).

Sisterhood and Shared Experiences ([19:32]–[21:25])

• Ariel’s Story:
  • Ariel, Shoshana’s sister, shares her own experience with surgical menopause post-BRCA surgery.
    • “No one told me… I was gonna immediately turn into a psychopath of, like, crazy hot flashes and mood swings…” – Ariel ([19:33])
  • Ariel connects her menopausal grief with her sadness about their father's decline.

The Confusion Around Menopause Care ([21:25]–[32:14])

• Expert Insights: Dr. Mary Claire Haver

  • Dr. Haver, OB-GYN and menopause specialist, explains the drastic lack of education in medicine about menopause, validating Shoshana’s confusion ([22:09]–[24:58]).
    • “In medical school, I maybe got one hour, one lecture on menopause… in residency, maybe five or six hours out of a four-year curriculum…” – Dr. Haver ([24:24])
  • She addresses how surgical menopause brings higher risks and how HRT advice is inconsistent and often fear-based.
    • “You should be allowed a modern approach … a true buffet of your options…” – Dr. Haver ([23:27])
    • “Surgical menopause is so much more devastating than natural menopause…” – Dr. Haver ([21:35])

• Misconceptions from the Women’s Health Initiative (WHI):

  • Shoshana describes how the WHI led to HRT fear, media misrepresentation, and decades of confusion ([29:04]–[30:36]).
    • “The study’s results, based on older women, were incorrectly generalized to younger women starting HRT in their 50s…” – Shoshana ([29:45])

• Personal Resolution:

  • After much deliberation, Shoshana begins HRT and finds dramatic symptom relief ([30:36]).
  • “Within about 10 days, the hot flashes completely stopped. I felt totally normal.” – Shoshana ([30:36])
  • She reminds listeners to consult personal medical professionals for individualized advice.

Second Surgery & Unbreakable Caregiving Bonds ([32:14]–[36:44])

• Double Mastectomy Decision:

  • The breast surgery is significantly harder, emotionally and physically, especially with her father deteriorating ([31:16]–[32:14]).
    • “It felt really selfish… but while I was in the hospital, my dad had a problem I couldn’t delegate to someone else.” – Shoshana ([31:55])

• Family Crisis:

  • Shoshana, still in pain post-surgery, is thrust back into action when her father’s insurance denies his crucial cancer medication ([32:14]).
    • “You were on the phone screaming… you never cry… something very bad was going on.” – Ed ([32:14])
    • The urgency and helplessness are palpable as she mobilizes all connections, even contacting the CEO of the insurance company.
    • “I couldn’t escape the responsibility that I felt for my dad's well being.” – Shoshana ([33:14])

• Recovery Realities:

  • The practical and emotional challenges of healing (pain, movement limitations, surgical scars) are discussed openly ([34:00]–[36:32]).

Return to Strength and Forward Momentum ([36:32]–[37:08])

• Resilience Through Routine:

  • Shoshana’s relentless drive to regain her physical capability (jogging, exercise) and the power it gave her during an uncertain period.
    • “Maybe I should be glad that she waited four weeks.” – Ed ([36:32])

• Foreshadowing the Next Chapter:

  • The episode closes with her father’s worsening condition and the challenges ahead ([36:44]).
    • “I was about to need all that strength because my dad was about to get really, really sick.” – Shoshana ([36:44])

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Notable Quotes & Memorable Moments

| Timestamp | Quote | Speaker | |-----------|-----------------------------------------------------------------------------------------------------------------------------------|----------------------| | 00:27 | "I love the Golden Gate Bridge. I love looking at it." | Ed | | 02:09 | "I went hard. I did it. I did not. Halfway. I went all the way." | Ed | | 04:43 | "The number one thing Ed loves is you." | Tracy | | 08:22 | "He wanted to call me every day and tell me about his bowel movements." | Shoshana | | 10:11 | "It's inappropriate and it is okay for you to draw a boundary…you are his daughter and not his doctor." | Ed, relaying Jeannie | | 13:41 | "I feel so grateful that I can do something to lower my risk … but I just feel like it's a lot." | Shoshana | | 16:46 | "Waiting rooms just feel really heavy … I've talked to people in them as a doctor, but I haven't waited in one as a patient…" | Shoshana | | 17:12 | "…Over just a week or two, my body had undergone a change that usually takes a decade or more." | Shoshana | | 19:33 | "No one told me… I was gonna immediately turn into a psychopath of, like, crazy hot flashes and mood swings…" | Ariel | | 21:35 | "Surgical menopause is so much more devastating than natural menopause for so many women." | Dr. Haver | | 24:24 | "In medical school, I maybe got one hour, one lecture on menopause… in residency, maybe five or six hours out of a four-year curriculum." | Dr. Haver | | 29:45 | "The study’s results, based on older women, were incorrectly generalized to younger women starting HRT in their 50s…" | Shoshana | | 30:36 | "Within about 10 days, the hot flashes completely stopped. I felt totally normal." | Shoshana | | 32:14 | "You were on the phone screaming… you never cry… something very bad was going on." | Ed | | 33:14 | "I couldn’t escape the responsibility that I felt for my dad's well being." | Shoshana |

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Important Segment Timestamps

• San Francisco and Sunset Sets: [00:10]–[03:12]
• Moving to Healdsburg for Family Care: [03:12]–[04:35]
• Ed’s Perspective on Family Sacrifice: [04:36]–[07:25]
• Boundary-Setting in Caregiving: [07:31]–[12:03]
• Preparing for and Undergoing Preventative Surgery: [12:03]–[19:32]
• Ariel’s Experience and Comparing Notes on Menopause: [19:32]–[21:25]
• Medical Confusion: HRT, Expert Advice: [21:25]–[32:14]
• Double Mastectomy, Crisis During Recovery: [32:14]–[36:44]
• Physical and Emotional Recovery: [34:00]–[36:32]
• Looking Ahead, Father’s Decline: [36:44]–[37:08]

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Tone and Style

The conversation is warm, candid, and at times humorously self-deprecating, but remains direct and unflinching in facing medical and emotional hardships. The inclusion of real-time voice memos and family banter with Ed, as well as expert opinion, adds a feeling of intimacy but also authority.

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Final Thoughts

Daughter, Doctor, Patient offers an honest portrayal of how expert knowledge can’t always shield one from the pain and ambiguity of illness, caregiving, and personal vulnerability. It explores the deep intersections of family, identity, and medicine, brings forward the too-often overlooked perils of surgical menopause and the failures of women’s health education, and underlines the relentless, messy hope at the core of family caregiving.

Listeners walk away both better informed and genuinely moved, empowered to ask better questions, set boundaries, and seek the support they deserve at any stage of life.

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Transcript

[A]

What are the top three things you love about living in San Francisco?

[B]

I love the weather. Absolutely fantastic. That's number one. Number two, I love the Golden Gate Bridge. I would love to pitch a podcast on the Golden Gate Bridge right now to anyone that's interested. It has to be 100 parts because there's 100 things I love about it, and it has to be four hours each episode. I love the Golden Gate Bridge. I love looking at it.

[A]

Let's just say Ed loves a lot of things about the Golden Gate Bridge. His passion for the city runs deep, and it's an integral part of his identity. During the height of the pandemic, Ed showed his appreciation for our city and our lives by hosting online DJ dance parties. He called them his sunset sets.

[B]

Now, tell me, people, what do you do when your wife made a request and you bought that request? You downloaded that request, but then you forgot to load it onto the thumb drive? Tell me, people. I felt like people were scared and needed some release, and I just thought, like, I'm gonna set up cameras on our deck.

[A]

How many cameras, dear?

[B]

Well, it started with one, and then it escalated to probably six, you know.

[A]

Including a zucchini cam.

[B]

We did have a zucchini cam. I grew a zucchini, and I'd play every week. Thursday, sunset sets, and I played 100 in a row. But the zucchinis seemed good. That's actually the second zucchini. It was ready for harvest yesterday, but I left it in there.

[A]

These became a testament to Ed's connection with San Francisco.

[B]

Wear a mask. Stay home. Peace.

[A]

And were there costumes involved?

[B]

Were there costumes involved? I'm a crocodile today. Or an alligator, it's unclear. There were unicorns. There were dinosaurs.

[A]

You were an astronaut.

[B]

I went hard. I did it. I did not. Halfway. I went all the way. I'm still happy you're here. And if I'm able to bring you a little bit of joy, that that's the best gift. Oh, my God.

[A]

Our dear friend Tracy Wheeler was one of the many who joined us online.

[B]

He was dressed like a squirrel or something, bouncing around, playing this music. The sun is setting, you know, over the Golden Gate Bridge in the background.

[A]

I would tune in or sign in.

[C]

Or whatever you would say and just enjoy this moment. Many moments he gave us.

[A]

Given Ed's profound attachment to San Francisco, you can imagine what a monumental decision it was when I asked him to leave the city and move an hour and a half away to Healdsburg to help take care of my dad. So set the stage for that happening.

[B]

You should interview our therapist.

[A]

Let's start with something that we agreed on. Ed and I both knew that my dad was going to be very sick for quite some time.

[B]

It was very clear that your dad was going to need support and that we both wanted to support him. Driving back and forth an hour and a half each way or more with traffic was not going to be sustainable. So instantly got an Airbnb and then it became clear that this was going to be a hands on experience for a while. And we got, you know, through the course of several months, lived in several Airbnbs until you told me that you really wanted to move to Healdsburg and that you wanted to have a house.

[A]

And how did you feel about that decision?

[B]

Oh well, I did not want to move to Healdsburg. We live in my favorite house on my favorite street, in my favorite favorite neighborhood, in my favorite city. And it was hard for me to reconcile your clarity of view and your determination and the obvious path of what was going to happen with how I felt about it.

[A]

But our friend Tracy saw Ed's decision to move to Healdsburg and become a caretaker for my father in a different way.

[C]

I thought, of course, because the number.

[B]

One thing Ed loves is you.

[C]

I mean of course he did.

[A]

That's Ed. I will be forever grateful that Ed was willing to leave his favorite house on his favorite street, in his favorite neighborhood, in his favorite favorite city to help take care of my dad. Because I was already juggling being a doctor and a daughter. And soon I was going to become something else. I'm Dr. Shoshana Ungerleiter and this is Before We Go episode six doctor becomes patient fall is in full swing and it's the perfect time to refresh your kitchen with tools that make everyday cooking feel simple and satisf. One of my favorites is the Quince ceramic nonstick fry pan. It's perfect for pancakes on a crisp morning or easy one pan dinners after a chilly day and the cleanup. Truly a breeze. By partnering directly with ethical top tier factories and cutting out the middlemen, Quince delivers luxury quality cookware at half the price of similar brands. It's the kind of upgrade that feels smart, durable and effortless. Lately, I've been reaching for my ceramic nonstick fry pan almost every day. Making cozy fall breakfast and weeknight comfort meals has never felt easier. Keep it classic and cozy this fall with long lasting staples from quince. Go to quince.combeforewego for free shipping on your order and 365 day returns. That's Q-U-I-N-C-E.com beforewego to get free shipping and 365 day returns. Quince.com beforewego. After my father's genetic testing came back positive for a BRCA mutation, we had hope his long term prognosis had improved. Because of the BRCA mutation. There was this option for a new targeted therapy that was taken by mouth and didn't have the same kind of side effects as traditional chemotherapy. That sounded like a really good option, especially because it could increase his survival and give him good quality of life. But it also meant that he had to undergo the traditional IV chemotherapy that makes you really, really sick. So my dad called all the time, night and day. Do you remember any of those phone calls and what he was saying?

[B]

I mean, yeah, your dad was the kind of guy who wouldn't take no for an answer. And I don't mean that in like a good way. I mean that as in, like, you know, the doctors tell him something really serious that he needs to do, and if he didn't like it, he would call you to try to get a second opinion or maybe you were the third opinion. And there were many times that it was difficult for you because you could tell that he was not manipulating you, but was not giving you a genuine question. He called to try to get something that he wanted, and he was getting caught in really, like, minutiae. Yeah, he was. He was not happy.

[A]

He wanted to call me every day and tell me about his bowel movements. And I just was like, oh, man. Okay. It's not that I don't want to know this or can't help you. It's that you need to listen to what your doctor's telling you. You know, that was a hard line to draw for me because I very often, for the people that I love, try to be as helpful as I can be medically. And for him, the best thing was to stay out of that stuff, to let him speak directly with his wonderful team of doctors and nurses. Because when I would get involved, it would get more complicated or I would tell him something different than what his doctor had said. And so he. He would hang on to that instead of doing what he was told to do. It was very stressful, the whole thing. And figuring out that I really needed to set boundaries for myself, to focus on my own health, to prioritize what I needed to do. Not knowing his prognosis or how long he'd be around, it was the hardest lesson in boundaries. And Self care that I have ever faced. Aunt Jeannie and Uncle Bill came to visit. Can you set the scene? Where were we? What did we talk about? Aunt Jeannie is my dad's younger sister.

[B]

We went and had sushi. We sat outside. You started talking to Jeannie about your surgeries and your dad and what a tough patient he is, and me just.

[A]

Feeling overwhelmed by it all.

[B]

I don't think that's what you said. I think it was clear you were overwhelmed. But you, you know, you're a problem solver and your dad was presenting us with many different problems. And Jeannie, and I think, I mean, the most beautiful, direct, amazing way was just so clear that we can't solve this for your dad. You are his daughter and not his doctor. Jeannie was very clear that, like, it's inappropriate and it is okay for you to draw a boundary around him and his medical care and that you and I, but you are going through something that is incredibly intense and serious with your own health journey and that you should feel empowered to make the space or take the space to do what you need to do for you.

[A]

And how did things change after that, if at all?

[B]

I feel like before you had taken your space to do your day to day micro things, you had micro boundaries. You're like, I'm working out today. I don't care what's happening, I'm gonna work out today. But that after that, you really, I think, much faster than me. I mean, you were incredible in that you took this feedback on board, you agreed with it, and you instantly started living it. And I was kind of like, oh, oh, wow. Yeah, we should figure out how to do this. And you're like, we're doing it, we're doing it. Dad, I can't talk to you right now. Dad, you need to talk to your doctor about this. Dad, I am not your doctor.

[A]

Dad, I have to have surgery in.

[B]

Three weeks, so you better get ready.

[A]

Yeah. Despite everything that was going on with my dad's health and his bowel movements, I never wavered on my decision to have preventative surgery right away. Never having had surgery before, that was really big. That was like a hard thing to wrap my head around, but I could just feel it. I knew that this was the right thing for me and what I had to do. And I definitely felt guilty about this idea of focusing on myself when my dad was sick. But it just. There are a few things in my life where I've felt so resolute that I needed to do this. And this was. And this was one of them. The first procedure scheduled for September was a laparoscopic hysterectomy and salpingo oophorectomy, which would remove my uterus, ovaries and fallopian tubes. And laparoscopic just means that it's less invasive. They don't have to cut you open, which is basically how we do that surgery now. Less recovery time, less pain. As the day of my surgery approached, I decided to record some voice memos about how I was feeling in case I ever wanted to share this story. People keep asking me sort of how I feel about having surgery. And honestly, the feeling that comes to me the most is I feel grateful. I feel so grateful that I can do something to lower my risk of getting really, really bad cancer. I've seen young people with ovarian cancer, which is often caught very, very late and is almost universally fatal. I really. I really want to do everything I can to not have that happen to me. So that's why I'm having surgery. So the surgery is in five days, and I'm ready, I guess, but I just. Yeah, I just feel like it's a lot. There's so much to get done before surgery. I have no idea what my recovery is going to look like. And I have asked maybe 15 different people, people who've had the surgery before, doctors, people who know people who've had the surgery, and. And everybody's giving me totally different answers about what recovery is gonna be like, how long I'm gonna be out of work, away from exercise, kind of doing the things I wanna be doing. My surgery is tomorrow, like, 24 hours away. And for the first time, I'm feeling more nervous. I think before, I was just like, let's get this done. Has to be done. Now I'm just nervous. Not so much for the surgery itself, but more of, like, the uncertainty of how I'm going to feel afterwards. The ovaries, you know, have a pretty important function in the body. They secrete hormones. So what's it going to be like to not have that stuff on board? I have no idea. But when I think about that, it's just. The alternative is, like, so potentially, potentially so bad. I just gotta focus on that kind of. It's the night before surgery. I'm probably the most nervous that I've. I've been just because you just never know, right? There's millions of women that have come before me that have had this done, but there's always a risk of major complication, even death with surgery. Today is the day I'm here for my surgery, sitting in the waiting room, just waiting, waiting to be called back. Waiting rooms just feel really heavy. Like, heavy places. I've walked through a million of them and talked to people in them as a doctor, but I haven't waited in one as a patient for surgery before. I'm feeling nervous, but I'm ready. I'm ready to go. Didn't the surgeon, like, show us pictures of his dog or something on his phone? Yeah.

[B]

Well, it's just another day in the office.

[A]

Right, right, right.

[B]

I mean, it's just. Oh, yeah. And, like, you know, you met him a few times at that point, right? You knew him, and so, you know, he's just checking in. He's ready to go. Like, I remember being really impressed by your care team, and I remember, like, telling myself, like, this is gonna be okay.

[A]

And it was okay. It was actually a pretty easy surgery. You know, I was not feeling great for a couple of weeks, but pretty soon after, I was back to working out every day and back to my regular life and felt really good. But the surgery had removed my ovaries, and now without them, nearly all circulating estrogen had been removed from my body. It's called surgical menopause. And it meant that over just a week or two, my body had undergone a change that usually takes place gradually, over a decade or more. At first, I didn't notice much, and then a few weeks in, I started getting these hot flashes where the heat would just come from the inside kind of out of nowhere, and I would start sweating. They only lasted maybe a minute or two, but they were so distracting and coming, like, once or twice an hour. When I was home, I would put ice packs, like, in the back of my pants to try to cool me down while I was working. And then at night, it was pretty unbearable, just waking me up all the time with drenching sweats. In menopause, many women deal with hot flashes. So I tried to normalize what was happening to me. I felt like it was important for people to realize, and men, too, that this is what a lot of women go through. So I remember being at, like, a fancy dinner out with, like, 10 people and my husband and starting to have this hot flash and, like, talking about it. And then I actually asked the waiter to bring me, like, a cup of ice in this, like, fancy restaurant. He looked at me, and I was like, I'm having hot flashes. Can you just bring me some ice? And I literally just, like, put ice, like, on my neck, like, during dinner. And people kind of looked at me like, what is she doing? And I was just like, this is what it is. This is normal. And even though I was experiencing something that many people go through, it felt just overwhelming, especially with everything else that was going on. My sister Ariel felt it too.

[D]

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

[A]

For Ariel, sometimes those mood swings would happen at odd times.

[D]

I was with my son and I was like, tucking him into bed and we were talking about. I can't remember what we were talking about, but he's like, obsessed with babies. He's my eight year old boy, but he loves babies. Loves looking at baby videos of himself and his sister from when he was little. And he wanted to talk about where he came from in my tummy. And so in an eight year old, appropriate way, I talk to him about, babies don't grow in tummies. We actually have body parts called a uterus where the baby grows. And after that conversation, I just remember feeling this overwhelming sadness of like, my baby's first home is like in a bio bag somewhere in a dump. I don't know. I don't know what they do with your parts after they are surgically removed, but I just remember feeling super sad. And I also had crazy, raging menopausal hormones. And I think had I known that could potentially happen as a byproduct of the surgery, I probably would have thought about the timing and dad's illness a little differently. Because I think what I was going through after the surgery was insane. And so I was, you know, going through that grieving process of seeing dad kind of slipping away and going into hospice and not sleeping and just kind of being a train wreck of emotion like I couldn't regulate because I was going through menopause or had gone through an immediate menopause.

[A]

The symptoms of surgical menopause were such an issue for Ariel and me, and we both got really conflicting advice on what to do about. Turns out my sister and I aren't alone.

[C]

Surgical menopause is so much more devastating than natural menopause for so many women. And the health risks ensuing from that just don't seem to be being addressed.

[A]

You're listening to before we go. I'm Dr. Shoshana Ungerleiter. We'll be right back. I probably spoke to eight women's health specialists and got eight different answers. I wanted to figure out why, so I called yet another expert.

[C]

My Name is Mary Clair Haver, and I am a board certified OB GYN physician and I've chosen to focus my practice on the care of the menopausal woman.

[A]

So a big part of this podcast is sharing my experience, testing positive for the BRCA2 mutation and then following through with risk, reducing double mastectomy and surgery to remove my fallopian tubes and ovaries. And then after the surgery, Right. I was thrown into immediate surgical menopause. Yeah. And I got a lot of conflicting medical advice on hormone replacement and whether it was appropriate in my case. In talking to my surgeon, he said, you should absolutely avoid hormones. I thought, oh, well, okay, that makes sense because of the BRCA and everything I was taught. Then I talked to a few more people and they said, no, you absolutely have to go on hormones. You have to. Especially since you're having a mastectomy. You're going to have virtually no breast tissue left. Your risk of breast cancer is close to zero. Very, very close to zero. You need to protect your heart and your brain and your bones. As a woman's health expert, do you hear this sort of story a lot from people?

[C]

I mean, this is my world now, so all the time. You should be allowed a modern approach to this and a true, you know, buffet of your options so that you can make a decision that you feel like is gonna work best for your life. Because surgical menopause carries its own risks, and those are risks that you're willing to take on. So you don't get cancer based on your genetics. But, you know, most people in your situation are not being given a full picture. Okay, now these are the things we need to do to decrease your risk of heart disease and dementia and Alzheimer's and stroke.

[A]

And this lack of information and even misinformation is not just happening to people like Arielle and me who have experienced surgical menopause. Menopause will happen to every person who was born with ovaries. And Dr. Haver says many of them aren't getting the information they need from their doctors.

[C]

I just feel like it's under education when I myself now again, I trained many years ago, but I was a residency program director until 2018. So I know the curriculum up until then backwards and forwards. And guess what? It hasn't changed. And in medical school, I maybe got one hour, one lecture on menopause. Hot flashes, ovarian function declines, the end. Then in residency, I think maybe five or six hours out of a four year curriculum of lecture only. We had no clinic, no nuances we never discussed perimenopause. Like nothing.

[A]

Perimenopause is a transition when hormone levels fluctuate, leading to changes in menstrual cycles and commonly symptoms like hot flashes, sleep disturbances, and mood swings. It can happen as early as 10 years before a person's last period, which means for many people, it can begin in their early 40s.

[C]

And so when I hear someone being told, you can't be treated until you're a year after your period, we don't treat perimenopause. There's nothing we can do. Yada, yada, yada. It's simply a lack of education. This is a systemic failure of the medical system for females.

[A]

When most people think of menopause symptoms, some of which start in perimenopause, they think of hot flashes and night sweats, maybe heart palpitations. But those are just a few of the possible symptoms that can happen when hormone levels decrease.

[C]

Our skin, our bones, our eyes, our teeth, our hair, our kidneys, our gut, our stomach, Asthma. I mean, it's 70, 80 symptoms that are linked to hormone changes. And it's different for each one of us. So, you know, in medicine, we. Like a duck, it walks like a duck, it quacks like a duck, it's a duck. There's not a really great duck other than a duck with no period and hot flashes for menopause. But that's only a small percentage of the population who acts exactly like that.

[A]

And for some people, not everybody, but a lot of us, these symptoms can be debilitating. Yes. Yeah.

[C]

So. And it depends on the symptoms. So, for example, musculoskeletal syndrome of menopause happens to 80% of us. So that's arthralgias, joint pain, hip pain, back pain, frozen shoulder, you know, with no injury. But no one was assigning it to menopause. You're just getting older. This is what happens. And then when we look at hypertension, insulin resistance, triglycerides, all of those changes accelerate with no changes in diet and exercise. These are things that happen with aging alone. So this happens to men as well. But what makes us special is these cardiometabolic things accelerate through our menopause. I cannot tell you how many patients I see when watch their LDLs rise, you know, watch their specific markers for heart disease start to rise at a much faster rate, and they've done nothing different other than go through menopause.

[A]

It's wild to me how few people, and myself included, right. Weren't thinking about my bones, my Muscles, my heart health, my brain health, as it related to, you know, hormones. I. It just wasn't, like, on my radar. For me, the abrupt loss of estrogen, probably 10 years before it would have naturally happened, had its own set of issues. It put me at a higher risk for osteoporosis, heart disease, and dementia. This whole experience got me thinking about why we aren't doing a better job of caring for women in midlife and really addressing these issues that so many face. A lot of what we know about hormone replacement therapy comes from the Women's Health Initiative study, which started in the 1990s. It's called WHI for short. This was a massive undertaking, the largest randomized clinical trial in history involving only women. It studied health outcomes for 160,000 postmenopausal women with multiple arms, looking at the effects of hormone replacement, designed to assess whether hormone therapy, we call this hrt, could prevent diseases like heart disease, cancer, and fractures in postmenopausal women. This study had tremendous influence because of its size and because it was a randomized control trial, which is the gold standard approach that we have for answering questions in medicine. Now here's where things get interesting. This trial was stopped earlier than planned. Why? They found small but statistically significant increased risks of cardiac events, strokes, blood clots, and breast cancer. But here's the kicker. When I dug deeper, I discovered something really surprising. The results of the WHI were widely blown out of proportion, which led to unnecessary fear about hrt. The study was designed to evaluate HRT for disease prevention, not for managing menopause symptoms. But its findings were misinterpreted as a blanket warning against all hormone use. Media sensationalized the risks, focusing on relative increases in breast cancer and heart disease, without explaining that the absolute risks were quite low. And the study's results, based on older women with an average age of 63, were incorrectly generalized to younger women starting hrt in their 50s, for whom the risks are lower and the benefits often outweigh those concerns. The media made things worse, sensationalizing the findings without explaining the nuances. Later, research that clarified these issues got way less attention, so these misconceptions persisted. Even Today, more than 20 years later, misinformation continues to confuse the public and Doctors, despite the WHI's actual findings showing that HRT is still a valid option for menopausal symptom relief.

[C]

It's really easier for the medical system to say HRT is bad, don't take it, let's move on. You know, instead of having this nuanced conversation around, well, you're really low risk. Formulation matters. We have these newer drugs out. We know that you'll probably live a longer, healthier life with hormone therapy, you know, but let's look at your individual risk factors, and then you make a decision what you want for your body.

[A]

It took me a few months to decide what to do because I was getting conflicting expert opinions about this. But once I decided to go on hormones, within about 10 days, the hot flashes completely stopped. I felt totally normal. Now I want to make a medical disclaimer moment. I'm not saying that every woman at every age should go on hormone therapy. This is an individual discussion that you should have with your healthcare provider based on your specific circumstances. The surgery to remove my uterus, fallopian tubes, and ovaries was in September, and I scheduled my double mastectomy with reconstruction for December. The breast surgery was really hard. I really second guessed that one big time. It was just later, and my dad was a lot sicker, and the last thing I wanted to do was to have surgery and not be there if he was dying. I called, like, all of my doctor friends to ask their opinions on that, and everybody said, you need to focus on yourself. I definitely made the right decision, but that was a really, really hard one. Felt really selfish. I had worked so hard to set boundaries with my dad and his care. But while I was still in the hospital recovering from that surgery, my dad had a problem that I couldn't delegate to someone else.

[B]

I walked out of the room to, like, get food or something. Like, I didn't leave the hospital. I went and, like, got a candy bar or something and came back and you were on the phone screaming. And for those that don't know, Shoshana, she is not a screamer. Your dad's insurance had denied this medication that he needed. The thing we'd been doing all the chemo for. And you were, like, eight hours out of the operating room. I don't even remember because we're still in. You're still in the hospital. And I remember you crying when you hung up. And you never cry. I'm the crier. And you weren't like, full tears, but, like, if you know you the way that I do, something very bad was going on, and you were very upset.

[A]

Yeah.

[B]

We started workshopping it. So, like, we're literally there supposed to be thinking about you and your recovery. And it immediately is like DEFCON 5 for getting this medication for your dad.

[A]

That moment was a profound reminder of how intertwined Our roles as caregivers and individuals can be no matter how much effort we put into setting boundaries. And even in the midst of my own recovery, I couldn't escape the responsibility that I felt for my dad's well being.

[B]

And you're like on your phone calling people. You're messaging the CEO of the insurance.

[A]

Company on the who I happen to know. No, I texted him. He's my friend.

[B]

Yeah, but you were like, no holds barred. We are solving this problem. And that was like major crisis. On top of you being pretty sick. I mean, not sick, but like, you were in a lot of pain.

[A]

After having the other surgery and how hard pain medicine was on my GI system, I decided to not take any pain medicine, at least not opiates. So I relied on Top Tylenol and Advil, which was interesting. I stayed overnight in the hospital. I went home with big, huge incisions and bandages and drains. I wasn't expecting that. I was, but I wasn't. I kind of didn't take the time to think about any of that stuff.

[B]

There was also like an issue where there was like a segment on your breast that we weren't sure if it was going to be okay or not. We weren't sure if it was going to be healing correctly. And it was in an area that you couldn't see. So I was like constantly reporting to you on how it was looking. And I do not have technical knowledge to communicate this. There was just a lot of really inadequate conversations about breast healing and how surgical sites looked and me trying to explain to you and taking pictures and then deleting them off my phone so I wouldn't have random like surgery boobs on my phone. I mean, it was, it was crazy time. It was crazy.

[A]

Moving was really, really hard. Like, even just getting out of bed, I had to get this like, you know those craft o matic adjustable beds so that I could press a button and it could sit me up because I couldn't move. We really take those things for granted. It was about a month in, I showed up to the surgeon's office for one of my post op visits and I said, I want to start jogging. And I wasn't even really a runner before. I am like a workout freak. I exercise every day. It's like a huge part of my life. And when I can't move my body, when I can't sweat, it really messes with my mental health. He said, you know, if you can tolerate it, go for it. So I like strapped my chest down and got on the treadmill and just started going. And I was like, oh, this hurts, but I'm gonna keep going.

[B]

I just thought, you are so you all of the time, like, there's just. I'm married to Shoshana Ungerleiter, and this is who she is, and there's no need and there's no use in providing feedback. This is what's gonna happen. And maybe I should be glad that she waited four weeks.

[A]

Jogging made me stronger and more fit than I had been in years. And I was about to need all that strength because my dad was about to get really, really sick.

[B]

I remember telling him on the other side of chemo, like, there's hope, right? We have to do chemo to knock down the cancer. It's horrible. But that because you do have this mutation, there are therapies that really have given people years of good life and that if we can cross this bridge, that there is something on the other side that's worth going for.

[A]

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 Lacey Roberts. Original music by Edward Ayton. 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're looking for a provider that's been trained in menopause care, I recommend visiting Menopause.org to find someone in your area. And if you'd like to see photos and videos and connect with other Before We Go listeners, visit us on Instagram at beforewegopodcast.