394. Testicular Pain and Stage 4 Breast Cancer

0:03Welcome to You Are Not Broken, the podcast that challenges everything we've been taught about midlife, hormones, and sexuality. I'm Dr. Kelly Casperson, board-certified urologist, author, and a leading voice in women's sexual and hormone health. Enjoy the show. Hey, everybody. Welcome back to the You Are Not Broken podcast. Today, we are talking with Dr. Susan Macdonald, who is another fellow female urologist. And I love interviewing female urologists because they're my people. Welcome to the show. Thank you so much for having me. I'm really thrilled to be here. I feel like we're a little aligned in our journeys and getting into urology because I didn't have anybody medical in my family.

0:38I didn't even know what a urologist was until probably first or second year of medical school, if even then. What was your journey into urology? Yeah, similar. I am the product of a teacher and a truck driver. And somehow I think I proclaimed when I was four that I wanted to be a surgeon. like most people of our generation I watched too much ER and fell in love with that but then shied away from that specialty and then I was in a lab at Emory applying to medical school and there was free pizza so I went to Grand Rounds and I had a great urology lecture and then there was like speed dating second year and they said oh god I said the funniest thing ever was the urology table but I didn't know what's called urology I was like hey hey I think I want to be maybe a genitourinary surgeon how do I get into that right like thinking you had to go general surgery and then and they were like yeah that's us and I was like oh okay so then they explained to me that those things were one in the same and that urology was in fact a surgical specialty and that is actually I think because it's ology people think neurology nephrology like people think urologists aren't surgeons but actually primarily they are surgeons and they train a sentence.

1:52So that got me into urology. And then beyond that, I specialized in male reconstruction, which a lot of people ask, like, why did you do that? And they said, it's sort of ironic now, but I had, I really didn't like to tell people that they had cancer. I did not like the moment where you change someone's life like instantaneously, but I did like high-fiving people when they could pee or have sex better. Like when somebody pees like they're 18 or they have sex with their life for the first time after 10 years. It's exciting and I get to be that doctor. Yeah, that's awesome. Urethroplasties are cool surgeries too.

2:28Okay. I mean, yes, you as another urologist would understand it's arts and crafts with people. It's right brain and left brain. It's the melding of those two things. And I have always loved that. I really love the technical challenge of those surgeries. And it's urethroplasty, that surgery alone, and particularly a cocardia urethroplasty, was the, hands down, the reason why I chose reconstruction. That's amazing. So urethroplasty, for people who don't know, like the urethra is a tube you pee through, it connects the bladder to the toilet, usually goes through the penis, and it can get scarred or strictured, like bad accidents and trauma can scar it.

3:04Remember a guy, you know, they get kicked by a horse in the groin and they get these awful urethral strictures. I always say it's everything that happens on America's Funniest Home Videos. Like when kids get, they slam down on a fence or a baseball bat right between the legs. Your urethra is shaped like a U as it goes under your pubic bone. So like right in between your legs, if it gets squished against the pubic bone, that's where most of the strictures happen. It's amazing to think, like to understand the anatomy on such a complex level and to be like, how did evolution figure out how to get this out of here?

3:39Mm-hmm. It's interesting. I know. It's super interesting because you're like, there's a lot of things that could go wrong, but it works most of the time. Yeah. To finish your thought, when we do the urethroplasty, the wild and cool thing that blows my patients' minds is that we take the inside of the cheek, which is stretchy and wet, and then we put it inside people's urethras. And the one I referenced is repairing the entire urethra. So you use both sides of the cheek, and then you patch it all the way. That's a big surgery. That's a big surgery. because they used to use hair-bearing skin, but then you'd get hair in your urethra.

4:12Right, and it would cause little stones and such. It doesn't work as well. Cheek is better. Okay, so you have the unique lens of being a urologist who actually cares about ball pain. I do. And we're going to talk about that because most stereotypically, most doctors, I would say, clinicians, do not care about chronic pelvic pain patients. Tell us how actually common that is because I don't think the average person thinks like that's yeah it's super common right so common but nobody talks about it i would say you know in medical terminology people estimate that it's about five percent of all urologic consultations so like our entire specialty that means one in 20 visits is motivated by testicle pain or some pain in the pelvic area and if i just say like you know when i started i had a generalist practice for two years before I shaped it into a subspecialty practice.

5:06And the amount of, I don't know, normal functioning 20 to 60 year olds who came in with some kind of testicle pain or some pain in their groin, high, really high. It's something that everybody needs to know how to do. And yet no one wants to. And I've thought a lot about that. And I think one reason is the stories are complex. So it takes longer. Two, our medical system does not incentivize things that are non-procedural. Three, we don't know what to do about it. Not very well. It's still like early stages. So then fourth, urologists are surgeons. Do you know why we always pick that? And I don't think America really knows this secret, but surgeons become surgeons because they're people who like a problem, a surgery, and a better patient, like a discrete solution.

5:57It's the kind of person who likes to work with their hands, the toilet's broken, they go get the part at Home Depot and they fix it and they feel like job well done. They do not like this no simmering chronic problem, multi-step, no, no, no. Yeah, no, no, no, no. And a lot of, especially chronic pain, we can talk about pathways and how pain kind of gets set up in the brain. Pain is sticky. Like it's sticky for a lot of people. It's not a light switch. I mean, distal ureteral stone, that's bad pain that you can fix in an instant. So satisfying as a urologist to take out kidney stones and fix pain.

6:34But pelvic pain, it's stickier. It's deeply frustrating. There's no scan to prove you have pain, right? Like something I tell my patients is, it's interesting, even on these testicle pain visits, people come to you with different desires. Some people want to know why it happened. Why were they normal? and then one day they woke up with pain that was unremitting and makes their quality of life very poor. They're not able to function. They can't go to work. They can't have sex, whatever it is. Why did that happen to them? That's what they want to know. They think some switch got anatomically, like something happened and we must be able to see it on a scan, which isn't the case.

7:16Other people are looking for a definitive treatment, which as you know, it's not a switch that can be flipped on and off. So it's not like we are like, oh, this happened and then we can fix it. And I can't prove it to anyone, right? Every time a patient comes in with pain, they want an imaging scan. And I understand that. They want to look for what's wrong. But the analogy I say is an ultrasound, a CAT scan, and an MRI are all pictures, just different types of pictures, right? And my dad owned a mechanic shop. And I say, if I pop the car on your hood that won't, or if I pop the hood on your car that won't start, right and i take a picture and i show you you're a mechanic can you tell me why that car won't start right like maybe the battery terminal is not hooked up and that's super obvious okay if you have a testicular mass that's super obvious fun fact for the masses though testicular cancer like a mass is typically painless almost always painless that's what will kill you testicular pain, what you feel is really annoying.

8:21It's not deadly. So it's like the greatest paradox. Anyway, we take all these pictures and they don't tell us what's wrong, right? Like to go back to the car, it could be the spark plug, the battery, it could be your alternator, could be the little key apparatus. You don't know anything along the way, but that picture is just a picture. It's not a functional study. You don't have a functional study for pain. Yeah, I always tell people, we get the pictures to make sure it's not a big tumor. But because it's normal, it doesn't mean your pain's not real. Because I think a lot of people get so dismissed of like, your labs are normal, your imaging is normal.

9:00And that's a good thing for doctors to say, because it means we looked and we didn't find the big boogeyman, but can come across as very dismissive to the patient. Well, I think there are doctors who are dismissive. I absolutely do. I used to think doctors were smart until I became one. And I was like, well, if I could be one, they're not that bright. Plus I've got my classmates, right? Like sometimes there's just a lack of common sense. And I don't mean like there are great doctors and they're not great doctors. It's a mix. But here's the thing. You and I got our start in these respective expertise areas because we had a bunch of patients who had problems and people were telling them like, it's okay, nothing's wrong, you're normal.

9:43And we knew that wasn't the case. And we knew there was something there. Just the data wasn't there. And so you and I just deep dived until we figured it out. Same thing. You know, these patients have usually seen five and six people before me. I think of it like the toddler toy. You know, there's a circle and a triangle and a square and doctors have to give you a diagnosis. So almost all of my patients get diagnosed with epidigital orchidus. That is a big long word guys for testicle infection. And then when they say, oh, I was told I have this, they say, I mean, take this with a grain of salt if you want to sleep at night, but go Google it and hit images.

10:23Is your testicle the size of a grapefruit and rock hard and super painful? No, it's not that. You know, like they have completely normal testicular exams, but they have pain. That's different. It's not an infection. I don't think this has been explored enough yet. I haven't seen a book on it. But the damage that's done, maybe that's a strong word, the damage that's done by needing to give somebody a label every single time you see them. Yes. Like, where's the analysis on this? Because see also interstitial cystitis. See also like normal grief that gets labeled as like a permanent mental health label.

11:03And I call it, this is what I call it. I call it heavy bricks in a backpack because people start walking around with heavy bricks in a backpack because some clinician with, you know, power and expertise gave them a brick because our job is to give you a brick at the end of the visit. Like that's how, that's how the houses are made. Right. And so they are carrying around all these heavy bricks, aka diagnoses that may or may not be true, but nobody's like, you're allowed to take out some bricks and put them down and put down the heavy if it no longer applies to you. And I just, I don't think that's being talked about very much.

11:43You have to have a diagnosis to bill. Let's, let's acknowledge that. So like to bill as a physician, I have to label you something. Truthfully, in my notes, I write sort of a differential. And I often say to patients, it's a little bit like house. Here's the four things I'm thinking about. And then I talk through, yes, I considered epididymal orchidus. Yes, I considered prostititis. Here's why not, right? And so I try to make the thinking that we learn to do a group activity with the patient out loud. So they're understanding what I'm considering and what I'm not considering. And then I usually write the top two or three in the note.

12:21and say, like, if this works, and I give them things to do, because we don't have tests, I say, if you try this, and this works, it's indicative of this diagnosis. If you try, you know, this other thing, and that works, it's indicative of this other diagnosis. And sort of our therapies also guide our diagnostic decision making. Yep. And I think, you know, now the whole ruse of it is I'm going to call it X so that insurance will pay for Y. Yes. So now people are doing that too. Yeah, of course. The way you can write things in a note and sculpt a note to make it... A common one in my is Viagra or Cialis.

12:58People wanted... Before Cialis went generic or was available generically, it was paid for if you had BPH. So it had an indication for urination if you had an enlarged prostate and erectile dysfunction. Of course, a lot of people had erectile dysfunction and they happened to be over 50. So you could write in the note that they, you know, if they had lower flow rates, that they had both, and then that would get paid for. But if they didn't, they didn't get paid for. So I don't know, insurance companies meddling and prior authorizations, you know, that's a whole rabbit hole. Oh, well, we're insurance companies, Blue Cross Blue Shield, a friend of mine who's a gynecologist, like this week posted that Blue Cross Blue Shield is requiring a prior authorization for vaginal estrogen cream on the basis of there's no evidence it's medically necessary, for which we have genital urinary syndrome and menopause guidelines that the AOA put out.

13:51Like the amount of bullshit that is happening now. And I think the other thing about the diagnoses is, number one, assuming we know everything that's going on with humans, is like, how many things do we have we just not discovered yet? I mean, I often say we're still letting, you know, bloodletting with leeches for a lot of medicine. But that's not the way the public conceptualizes it. The way that the public conceptualizes it is that we're in an era of functional MRI, brain imaging. When you think about what the public sees in the news, they see face transplants and stereotactic gamma knife surgery.

14:27It's sexy. Surgery with robots. It's all very technological. But a lot of it's marketed. It's a marketing of confidence. Of course it is. But disconcerting as a patient to go... Okay, so my patients might see five or six people who tell them it's epididymorchitis. They come to me and I say, no, it's not. I tell them, I ask them how they're pooping. They look at me mystified. It seems like it doesn't connect, right? I have to explain, well, if you hit your elbow, your pinky is going to burn and you know that. So I'm explaining another type of referred pain here. I promise you pooping does have to do with your testicles and I will tell you why but it sort of makes me look like the quack and I have to like roll it back and then at the end of all that they get a maybe of two diagnoses you know and I can understand why that feels really uncomfortable and also I'm like well I don't know if my treatments will work we're going to try them and it's just less definitive and that's not doesn't build confidence this podcast is sponsored by figs so much of what we talk about on this show is knowing that you deserve to feel confident and comfortable and that's true not just in your personal life but everything and as a health care professional i realized that the same standard should apply to the way I show up to work every day.

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17:54And when Quince asks where you heard about them, let them know it was You Are Not Broken. It's the best way to support the show. Yeah. Well, I learned, attending told me this in residency. He's like, the definition of an expert is somebody who knows they don't know. and the definition of an amateur is somebody who's very confident that they do know right and i see that in your field i see that my field you know people come to me because i know i know a lot about sex med and menopause and you know they'll ask some question about something i'll be like we don't know that you know and then they get upset because like oh my gosh i went to like the expert of the expert and it's like the expert of the expert knows all the holes in the in the field, right?

18:36Like you as a testicle pain expert, you know how understudied it is, how many questions we don't have answered, like you know, the gray of it. And then they go to the expert and you're like, maybe. Now, sometimes someone asks me something and I say, Oh my gosh, that's a great idea. Like, let me write that down. We should do that study. But of course, that's annoying, because they're like, well, why don't we have the answer already? Right? Yeah, totally. I mean, do you have a definitive day or timeline or thought of, you could have just dismissed these guys. Like all the other doctors dismissed them.

19:07Just like I could have dismissed my crying patient with the sexless marriage. And I didn't. I turned left instead of right. Do you remember, was there that patient? Was there the moment of curiosity? Like, why did you lean in instead of just doing what all the groups do, which is lean out on these people? I think there was a few steps, like little baby steps that I didn't know would be would lead to this and then one really big intentional step so the little steps were in fellowship aside from doing urethroplasties I learned to do a microsurgical denervation of the spermatic cord which is a mouthful to say using an operating microscope I learned to basically strip some structures off the spermatic cord that leaves the testicle not able to sense pain.

19:59You know, the data had already been out by like 10, 15 years at that point. It wasn't anything new, although people, not a lot of people were doing it. I would not have believed it had I not done it myself. So in fellowship, I saw people who had 10 years of pain, like seven out of 10 pain, taking Percocets. And we did this surgery and they were pain-free. You want to talk about people who cry and hug you? These people, I mean, I only did like 12 of them, but every single one was pain-free. There was one person who had some pain. And I said, you know, only 50%. And the studies, they define success as 50 % improvement or better.

20:39But I'm telling you, like what I saw was complete pain-free. So the person who was only 50 % better, I looked him dead in the eye. I said, okay knowing what you know would you do this again he was like oh yes and still in my practice i have people who are only 50 better and even those people are just over the moon with what it does for them and at least in my hands i'm very selective about who i pick it was revolutionary so so that got me thinking like oh my gosh why are we doing this for people more like why is this a well-kept secret why aren't more people talking about this people just sort of like were on the surgery side, I think really hesitant because you strip a lot of structures from the testicle.

21:19One of my colleagues once said, it's like leaving the testicle like on a tether, like a tether ball, because the original article describes stripping everything in the core down to one artery and three lymphatics. So it is like hanging by a thread. Yeah, yeah. It makes a lot of people very nervous. We've since learned to go to a more targeted approach, but I will tell you, I only changed to the targeted approach in the last few years. I was doing the one where you strip it all the way for a long time and it worked great. So that was the first step. Then I got into practice and it takes time to build a specialty practice.

21:52So I amassed these people. And it's sort of like a Venn diagram. So I did sex med. I did avoiding dysfunction. So people who weren't peeing well, and then I did testicle pain. And if you drew a Venn diagram And the middle of that Venn diagram would be pelvic floor dysfunction. So people will have the... You see a lot of it on the female side, but on the male side, there's the same hammock of muscles. There's just different things that run through them. And people get a lot of pain when they carry their tension in those muscles. And there was nothing written about it. In the early days, I literally told my patients, this is what you have.

22:29But if you Google it, it's going to be wall-to-wall vaginas. So be careful. and also they would get told to kegel which is the opposite kegeling tenses those muscles and we need yeah we needed them to relax their tone so then for three years i thought it was crazy because all of my patients had pelvic floor dysfunction and no one was talking about it there was very little written about it so i did what you did i did a deep dive and i kept asking questions and i kept reading and eventually you sort of put your bat light out and you say like I have this question. I'm doing this. And then you sort of meet your colleagues.

23:05You stumble upon the other people who don't take no for an answer, have a bunch of unhappy patients, and these patients who are being ignored. Like literally other attendings, I've heard attendings say, don't see those patients. Like don't do that because it's not, it's a 45-minute visit that's non-procedural. It's frustrating. Sometimes the patients are cagey and mean to their doctors. And you know why? Because they're in pain and no one's helping them. Of course they're angry. Of course they're angry. You would be angry. I would be angry. And they're mistrustful. And it's a challenge. And that's probably ultimately the third reason.

23:53And it's a challenge. My mother, Teresa Sensibilities, I thought, yeah, let me do this thing and fix the thing that nobody else is doing. I'll figure it out. And I don't know that I figured it out. But I did get a good, healthy practice going and made a dent. And when I noticed how was me and like 10 other people in the country, I was like, oh, why don't I make a career out of this? And then I intentionally put myself out there as that and made it onto the guidelines panel. and yeah that was incredibly educating like there are so many things we're not doing in this country that we could be but again going back to how insurance dictates care until you do a study to prove that it's a viable treatment you can't get insurance to pay for it but how do you do the study and get the thing paid for when insurance won't pay for it exactly goodness gracious um do Do you have good pelvic floor?

24:48Yeah. Do you have good pelvic floor physical therapists in your town? Okay. Because I'm like, how could you do this without them? No, actually, before I took my job, before I even started my faculty job 10 years ago, which I have left for the record, I don't know about my new town, but I asked to meet a handful of people. And one of the people I said is, let me meet the pelvic floor physical therapist. Like I want to go to her studio. I want to meet her. We are going to be good friends and share all our patients. And we did. we had a really good run that's amazing i did that when i moved when i moved here and i have a physical therapist i forgot i did this she's like you know why you're impressive because when you moved here you came out and drank coffee with us and i'm like i forgot that i did that but like it first of all it leaves a mark for anybody who's starting their career do that especially if it's your referral people or that you refer to like it makes a mark and people matter and people remember those things so pro tip for the youngsters it builds collaboration and there were patients I wasn't sure about.

25:48I was like, I think this is what you have, but let's go see my therapist. Like this pelvic floor physical therapist is really knowledgeable. And if she concurs, then I will feel more comfortable with that diagnosis. Yeah. Yep. I love it. Well, thank you for doing that. I mean, again, it's going down a path that we were trained not to go down. Like I remember, this was a long time ago now, but it was like a female in urology starting her job. And she's like, I told my, she put on her whatever job application i only want to see two pelvic pain you know pain people a day actively blocking these people out of their practices because they're so challenging we medicine doesn't have the resources insurance doesn't pay then you're the one who's holding the like why can't you fix it so it's i think it's a systems problem as much as a culture of people in pain are difficult, which is true, but they're humans in need of care.

26:47And they're difficult because the system is set up not to support them. Like it's not their fault. Well, they also get invalidated. They get medically gaslit quite a bit. They get told it's in their head. They are told exactly what you said. Your ultrasound is normal. Your white count is normal. Your exam is normal. Yeah. So let's talk about, this is what I was taught. Antibiotics help sometimes. This is what I was taught, so correct me if I'm wrong. Antibiotics help sometimes for one of two reasons. Number one, placebos help things. Number two, some antibiotics, I believe it's the fluoroquinolones, actually have an anti-inflammatory nature to them.

27:28And so that's what I always thought of like when people say, hey, the antibiotics helped. Can I have more antibiotics? Even if you've never found an infection, they are helpful. Antibiotics come with side effects. So there's always a risk to taking antibiotics. Is that correct? So I don't think antibiotics are wrong. I think you should try antibiotics one time, perhaps. The placebo rate just in general, like if you look up studies with placebo, it's round about like 30, 33%. So if you think about that, that's high. If you give 10 people antibiotics and three people say like, yeah, it worked great or a sugar pill, you know what I mean?

28:06Like it's hard to differentiate. I do think antibiotics make people better. I have patients who have, you know, pelvic floor dysfunction, whatever, and it's not an infection, but they feel better when they have a course of antibiotics or just after them. The problem, as you know, is that's not a treatment plan. You can't just like redose people antibiotics over and over and over again. We need to find a definitive treatment that is sustainable. So sometimes going back to insurance, cost makes it not a definitive sustainable treatment. Sometimes it's a time investment. So like in Peyronie's disease, the traction device we use, you have to wear it on your penis for an hour every day.

28:51And my patients look at me like I'm crazy. And I say, this is much better. the prior model was six to eight hours a day. So like you can watch an hour show and sit with it on tribe, you know, but even I, I acknowledge, I don't ask my patients to do anything I don't think I could do in my daily life. And so I think an hour a day would be a challenge. This is why I don't tell people to stop drinking coffee. Yeah. I say, yeah, you know, drink your coffee and live with the urgency. Yep. I was like, you can see how it affects it and then you can choose or not. But like, I think it's, I live in the Pacific Northwest.

29:28So I think any doctor that tells a person you have to stop drinking coffee without the like, try it if you want to try stopping drinking coffee. But to me, I'm like, it's a cultural thing here. You know, like it's a big ask for some people. Do you want to pivot into your personal journey? Because I think people need to hear that too. Where do you want to start? Do you want to start on your day of diagnosis? Sorry to put you on the spot of like, where would you like to start this journey? No, that's okay. But, you know, I want to start actually way back a little bit before because we're going to get into resilience.

30:02So I'm going to say, you know, there's a cancer diagnosis coming. So gird your loins, ladies and gentlemen. When I was a medical student, I was a neuroscience TA. And there was a day when I went driving with my mom and she couldn't pivot between two miles. And I knew she was going to get Alzheimer's disease like my grandmother. and I did the math on like how old I was and how long my grandmother's journey took and that math put my mom's declining spot in the middle of a surgical residency and I have a brother who's bipolar and that seemed like a challenge but I did it anyway I decided to be a urologist and in that time Kelly as you will recall we're only did we get up to 12 % a whopping 12 % of the urologic workforce yet?

30:50I didn't get the memo. I keep saying 11%. Okay, so we're still 11%. So urology is, what is that? 89 % male. So as you might imagine, the psyche and the culture of our surgical sport is not one that thinks highly of family obligations, emotionality, or anything else that's particularly typically attached to women. so in that time male reconstruction was all men I remember going to so so okay let me back up I did my residency and I was thinking about male reconstruction and I didn't want to be thought uh lesser of like I was distracted in residency so the punchline here is I did a six-year residency and told no one what was going on with my mother and my brother in the background until two months towards the end of residency, I had to say, hey, I have to fly home and get power of attorney or we might lose the house if I don't pay bills.

31:48And that was quite a shock to everyone that I had interviewed for fellowship and I had talked about my dreams of owning a farm and been very personal with people, but held this thing back. And that was because I didn't think I would get to where I was going if people knew. I still don't. I'm glad I did it that way. but I did things like counseling and support groups so I had that challenge I had that grief I had all of those experiences in the pressure cooker of residency already right okay so then fast forward I did a male reconstructive fellowship I started in practice things were going well and eight years into practice I was at the top of my game all the like classic award check boxes that you would have and stage four breast cancer de novo no family history bilateral and see the thing is i couldn't even quote you the kind of statistic i am but it's like point zero whatever because i think it's seven percent get diagnosed stage four de novo and then if you think about pre menopausal not a 60 year old woman but like take it to someone who's in their 30s or 40s then it's an even smaller, a much smaller percentage of the 7%.

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34:20With commercial insurance coverage, Addy is as little as$20 a month. Eligible patients only. restrictions apply visit addy.com a d d y i.com and just so people know de novo de novo means at diagnosis it was stage four it didn't become stage four from an earlier that's what de novo means okay right so a lot of other people's stage four journey is they get diagnosed they have a lumpectomy they have chemo it comes back it progresses. It's like different. This is one day I was a practicing urologist running two rooms doing vasectomies. It just so happens on my last day of what we'll call a healthy practice.

35:05There was, it happened to be a visiting professor. There were no residents and I was doing, I think I did like 15 vasectomies. And then I found out later my scapula was fractured. I didn't know. I just thought I had tweaked my rotator cuff. But when my scans came back, you were having like shoulder pain you had right arm pain well like right here i thought it was my rotator cuff and uh i carry my satchel bag and see like i have my work bag with me this is this is an example and it has my laptop and it has the stuff for my kids like wipes and like uh you know pain meds and basically everything you would possibly need in a day and it was always on my right shoulder and I felt it hurt.

35:47And then my kid went like, you know, I have two boys, so it's WWE. And we were doing our thing in the yard and I felt a tweak. And I just thought, oh, because my husband had gone on a rope sway one time and then it's never been the same. And I just thought, okay, welcome to life after 40. My, you know, I'll take some Advil. No, it was cancer. I did not know. The only other symptom I had, believe me, I've laid awake and thought about this a lot at night. The only other symptom I had, I had a mass, which I missed. Just for the record, get your mammogram. You have to be 40 to get your mammogram. And I meant to get my mammogram, but I was taking care of a mom with Alzheimer's, special needs son, a high-poiler brother, running a residency.

36:29I was a little bit busy. I was proud of myself for having a history in fiscal and getting my teeth cleaned. And I was going through the screenings, but with no family history i knew the odds i bet the odds and i lost so go get your mammogram ladies so yeah i had a mass that i felt all of a sudden and i as a physician missed it and then the only other thing is and it's terrible to admit i was trying to do intermittent fasting because so many of my residents were like telling me about their amazing uh the way they felt more energy weight loss, all of it. And I was getting really good at it. Too good.

37:05I wasn't hungry. And when I stopped and I had my diagnosis, it was a full six months of treatment before I felt the sensation of hunger again, like real hunger. Wow. How do you think the intermittent fasting tied in? Are you just saying like, Hey, I was already kind of like training myself not to be hungry or I'm saying I didn't notice I wasn't hungry really because I was skipping and I was intentionally fasting on breakfast. And sometimes surgical days, I would, you know, work through the lunch hour, it'd be like three and I'd be like, Oh, that's not fine. You know what I mean? You shouldn't feel fine.

37:45You should be hungry. But I was thinking my body was adjusting to fasting and that, you know, physicians were bad at physicianing ourselves. You shouldn't be your own doctor. So you're saying that a sign of cancer is no hunger. Yeah. You lack of appetite and I had lost my appetite. Yes. My kids, I brought some food home from work that I hadn't eaten. And they're like, why are you bringing this food home from work that you hadn't eaten? They were just like, why? And I was like, well, I've spent 20 years not eating because of my career. And I'm trying really hard now to eat at lunch. And sometimes I still don't.

38:23And so I brought that food home. But I'm like, I wanted to model to them, like, I'm trying to be healthier now, that I'm not in the system that trained. And I told them, I'm like, I grew up, you know, my young adulthood was in a system that I did not urinate, I did not sleep, and I did not eat. And I'm trying to do better now. I'm so glad you brought that up. Because one of the greatest challenges going from doctor to patient has been this. as surgeons we are pathologically conditioned to ignore our bodies not only did you not eat not drink not sleep all those things but you learned and you actually put effort into getting better at it you learned how to carb load and protein load for long surgery days you learned how to bank sleep ahead for when you were going to be really tired you learned what caffeinated beverages and food and what increments could get you through.

39:23We actually all fine-tuned our ability to ignore our body's needs constantly. And I think that was part of why I missed the shoulder thing. My husband actually told me I complained about my shoulder for a year and I had no recollection of that. I thought it was just something that had been going on for two, three weeks. But I think we really ignore our bodies. And now what's interesting as a cancer patient to function, just like this is not an optional thing I do I wake up and I spend the first 20 minutes of my day having coffee and listening to my body do my joints hurt is my next step do I feel sad there's a schedule but on any given day the schedule gets scrapped and like sometimes I have just really sad days full of grief and I need to go just hold on to everything that makes me happy.

40:14It's like, no, nothing of productivity gets done today. Today, we're going thrift store shopping. We're going to eat a Cinnabon. We're going to go hang out with friends. And then sometimes it's like my body hurts. I need to do some yoga and some stretching. I don't know. Whatever it is, I listen to my body so intently now. And it's hard to combat the anxiety but if something is new or different i have to address it early and i have to take it seriously so like my calf got swollen and it hurt one time after i traveled to a conference so and say hey guys can i have a duplex like can you do an ultrasound of my leg to check for a blood clot because i have cancer i'm hypercoagulable and i do aim to have a speaking career travel a lot so this is gonna happen so like i do my exercises on the plane and i might take some aspirin but you know, if I get a swollen calf, I got to take that seriously.

41:11Yeah. I got into coaching because of sex, because I'm like, I can make your pelvis perfect. But if your thoughts about sex are dirty, awful, take too long, blah, blah. So I got into coaching to be like, how do you change the mindset? And in coaching training, they're like, here's the entire wheel of all the feelings. And I'm like, a wheel of all the feelings? What? And my joke for a long time was surgeons have one feeling, it's tight. That's so true. Our second feeling might be anger. But like, to me, I'm like, there's enough feelings to go like to put it around in a circle and make colors of all the like, I was like blown away by it, like dumbfounded, like, there's more than like happy sad.

41:56And of course, the surgeon feeling of tight. So yeah, I think listening to the body and you know, that's all the body modalities now. And I don't know how much you've gone gotten into that on the cancer journey, but like breath work and yoga and the body intuition. And I was doing yoga just yesterday. And in the middle of my yoga session, and I'm kind of like a grumpy yoga person. I'm just like, I'm stiff again. I got to go do yoga. In the middle of my yoga session, I actually had a moment of enlightenment because I was like, oh, my body loves me. my body loves me and it was this happened literally yesterday and I was like we don't know that we don't know our body loves us and is trying to talk to us in its language so that just happened to me yesterday I still I have more decades of this to explore yeah no I've I've done a deep dive on holistic self I think more so than other physicians I you know I was like the wellness chair before I became program director in the residency and that was because I was someone who because of my experience in residency and going to counseling and support groups in secret I thought everyone struggles in residency with something we all have a personal life why do we pretend like it's not happening why does it have to not exist like why don't we just melt those two things simultaneously deal with both I think we'd have happier healthier or trainees.

43:25So when it came my turn to be on the faculty side, I wanted to address that. I wanted to address when your patient has a complication and you feel terrible and you can't sleep at night. I wanted to address all those things. I was already in tune with the emotionality of being a physician. I was really good at reading the facial expressions of my patients, both from my childhood and also I double down on that training to try and make them comfortable to try and help so i'll give you an example like i asked a patient recently what do you think about like taking this medication every day and they said it wouldn't be the worst option and i'm like oh that's a no because their face tells you and then it i hold a mirror if they say did you hear yourself say it wouldn't be the worst option you didn't say yes thank you i want to do that you said it wouldn't be the worst option that is not your go-to choice so I was aware of all those things but now having done the cancer journey it's literally it's a mind trip for me that I spent 10 years as a prostate cancer expert and now I live sort of the the things that people go through I could sense it but for instance I think a lot of people go through shock uh in the beginning I think at least I see a lot of why me why me why but i did i skipped that phase i was very aware that people do the short straw in life and it was arbitrary um i've seen enough kids hooked up to ivy poles to know that there's nothing fair then sort of treatment and the flurry of treatment and then there's this moment where you set in for the long haul what is the next phase of life look like and i think that's different for different people in the sense that it matters what your cancer diagnosis is like how bad it is like if you're going to be done with treatment like let's say you have to have your prostatectomy and you get through and you don't have complications maybe it's just that simple you sort of go back to life but I think for most people cancer treatment forever changes them and for some people dramatically I mean stage four basically burns your life down and especially for me as a working surgeon, I didn't even know if I could come back to surgery.

45:42And then even when I did, my brain and my body functioned very differently. I'm on oral chemotherapy. I think this might be the most surprising thing of my whole cancer journey. It takes apparently great emotional insight to override what your brain sees as a pattern. So when you look at me, you see a healthy person and you just treat me like a healthy person. but I'm not. My life's dramatically different. In the early days, I would go to work and everyone would treat me the same, but literally I was awake every morning from two to 4 a.m. for months, thinking about my mortality, thinking about the things that I had done, like basically having a midlife crisis.

46:24And I would have these huge hormonal swings partially due to the hormone deprivation and the chemo and dealing with all the grief. And you really go through it, but I look like this. And a lot of our, you know, my prostate cancer patients look like this. I look like that. Healthy presenting. Healthy presenting. And you know, nothing, I hope she doesn't mind if I tell this story, but nothing was more educational than I started to suspect it. And then it happened. I was chatting with a nurse practitioner in our academic office. And then it was like lunch hour. And then I walked over to the cancer clinic to go as a patient.

47:03I bumped into her almost like head on. And she said, are you lost? You don't see patients over here. And I said, I'm here as a patient. And that was someone who was exceedingly kind and caring and knowledgeable about the oncologic world. And she just forgot. It was just like a literally a mental slip and she felt bad about it. But that was the thing doctors nurse practitioners providers everyone they couldn't remember how sick I was because I had been superhuman before I was sick and I think everyone just expected because I looked like this I would like skate through stage four as if it was no big deal and I certainly tried oh I tried but really it was just the slow reckoning of what I had lost and needing to reorganize my life and build a new one.

47:55Because I don't think, you know, being a surgeon long-term, that's not it for me anymore. Now you've been in the medical system, both as the surgeon and as the patient. Is there a point where you're like, I don't want to deal with the stupidity? I don't want to, like your life becomes more clear when you're like, I don't want to put up with the stupidity of being in the system anymore. or is it more like a physical exhaustion? What is it where the pivot out happens? Oh, I hate to tell you, but the pivot out was forced. And then it wasn't so... And then I had to accept that, grieve it. And then on the other side, I saw, no, this is better, this is better.

48:37I don't want to deal with all the bullshit. I'm not there anymore. So the way it happened was, I came back at 0.5 FTE or full-time equivalent. So I came back to do 50 % of an academic surgeon's job. And firstly, everyone should know that academic surgeons are slightly different than private practice surgeons. Not that they don't work very hard, but academic surgeons teach and we publish and we do research and a lot of that stuff happens on nights and weekends. So on an average day, I might get up at 5, 5.30 and like do stuff on my computer, then do my kids, then get up and like go to work. and then I would be doing like zoom calls for committees and um research and whatever in the evening time uh and then churning at night after like then doing my kids and tub time and all that stuff and dinner time and then like you know going to bed and rinse repeat for years so I could not physically sustain a full eight to five work day let alone a surgeon's work day and what is full time for a surgeon i asked my organization and never got a clear answer so that's a problem right like what what is full time and then what does part time mean because i think their idea of part two is actually like full time right like an academic surgeon works maybe like 60 75 hours i don't know whatever do you think part of the inability to define full time is because if you actually defined what full time was it would be so egregiously overworked that it's best it's best not to define it?

50:09Correct. So I wrote an email where I said like, what about 630 morbidity and mortality conference? What about 630 faculty meetings? What about, you know, like my clinical time was counted, but what about the time I spent charting afterwards because I'm on chemotherapy and I'm slower now and working all the buttons. I'm having to rebuild my neural pathways. So I couldn't chart in tandem with my clinic. So I did clinic and then my entire day was all of my energy. And then my next day was my off day. And I'm like charting my patients in the oncology waiting room. And all I knew was like, this has got to stop.

50:46I don't even have time and space to breathe. And I couldn't keep up. And it was literally killing me physically to try and do that. And I asked for help. And I said, what would it look like if I work less than 50 %? and Kimberly or Tiffany or whoever it is, this is one of those moments. There's like five or 10 moments etched into my psyche. This is one of them. I called HR and I said, is it true that if I work less than 50%, I lose my health insurance? And she said, no, you don't lose your health insurance. You get COBRA for a period of time. And so it was then that I found out I would have the, if I worked less than 50%, 50 % was killing me.

51:34I could do that. Or I could work less than 50 % and I could pay$24 ,000 a year for my health insurance for 18 months before I would lose my health insurance entirely. And my hospital employer stood firm on that. I tried to fight it. I hired a lawyer. But that was, you know, I guess my PSA to doctors, firstly, is private equity doesn't care and healthcare is a business. I did all the things. I am the American dream. I bootstrapped myself up. I was a great surgeon, a great doctor. And I mean, I worked really hard to be indispensable to the program I was at. And a lot of your owners do know my name, you know, like I achieved all my dreams.

52:21And none of it mattered in the end. None of it mattered. It was all irrelevant. It didn't matter what I had done or how fancy I had become or what I could continue to contribute even through my illness. None of it mattered because had they changed the rules for me, they would have to change the rules for everyone, you know, and that would be pricey. So I knew in that moment I had to leave. I wasn't going to be treated like that. And I deserve healthcare. I'm like a contributing member of society. I deserve healthcare. And so I started looking at other avenues. And so one place I've gone to that's a passion project is, and I was on this like gravy train beforehand, but I had used little one to two minute videos to help inform patients about what would happen to them after surgery, because it's the love language, modern love language, little reels.

53:13right and and it worked like a charm so the company i was working with i kept poking them being like you should hire me you should hire me and i badgered them until they did so now i'm a single vid script and i hope to bridge the doctor patient education gap with video because i thought well i could take how can i use all this medical knowledge right like i have so much medical knowledge but my body won't sustain a work day so what can i do instead what's flexible right And so industry is one way. I hope to be motivational speaking. And then the other is I want to talk about, you know, pelvic pain, chronic or calda until the cows come home.

53:54So we can get it, like, you know, we can get the information to the men who need it and help them find providers. And, you know, stay tuned. I'm not going to tell all my hands, like all the cards I have close to my chest right now, but there's some big things coming. That's exciting. Tell me, we want to shout out to you speaking to cancer groups and your interest in doing that. What do you love about doing that? What do you want to do more of there? I think that sometimes when people get cancer, it's a perspective thing. And it's really easy to think your life is over or to feel like you're dying or to feel sad and let it overtake you and survive.

54:38it's really easy to live in survival mode rather than living vibrantly to the fullest in my cancer support group my personal cancer support group we call my corner of the club the zero fucks club literally every time the like rules get introduced to a new person and they say i'm the captain of the zero fucks club because what we do is yolo to the hilt you think you want to do something, do it and do it now. Right? So I want to teach cancer patients how to get through their grief, how to build resilience and how to get to living joyfully while life still rains down on them. There's this great quote about, um, it's not about avoiding the rain.

55:22It's about learning to dance in the storms. I love that. So if there are cancer support groups, Yeah, I will talk to you for free. For free, because I love cancer patients and I want to help you. And if any big cancer people want to have me out there, yeah, invite me to your conference. I want to be a speaker because I know a bit or two about resilience. You want to just shout out how you want them to contact you? Yeah, sure. My DMs are open on Dr. Susan McDonald on Instagram. Let's start with that. Okay, awesome. I love it. Tell us about Tart Cherry Juice. Oh, yes. Oh my gosh. Okay. First, I have to tell you that my favorite doctor is my palliative care doctor, Dr.

56:04Christina Newport. Everyone should go to palliative care because first you have this gut reaction because I was 42. So I was like, oh, no, no, not dying. But I went and you know what? Oncology, my oncologist keeps me alive. And I love her sincerely for helping keeping me alive. But my palliative peer doctor made it livable this life. So I was sweating through my bed sheets and she told me, Hey, there's some data on cherry juice. And she actually printed all the paper for me and gave it to me, I think. And I read it and, you know, I use a lot of off-label stuff in the pelvic pain sphere. So I'm like, Hey, what have I got to lose?

56:44$9 juice. Let's go. Which, okay,$9 juice is pricey. And I stopped, I stopped sweating through. So one of the first places I went back to was a conference called Society of Women in Urology. And I didn't think ahead, but I couldn't... You can't get tart cherry juice at the airport. It's not the kind of thing you can put in your luggage. But we were in a shishi resort area. And I saw one of those organic groceries. And I thought, they will have it. So I thought to Uber Eats myself tart cherry juice, but they didn't have it. So they had tart cherry lemonade. And at first, I was really bummed out.

57:18But I literally just had a glass. The first night, I sweated through my sheets. Like my PJs were drenched. Second night after one 8-ounce glass of tart cherry lemonade, not even the real thing. Fine. It reduced my hot flashes, I would say by about 80%. I really could tell if I didn't take that tart cherry juice every day. So it's the basis of my everyday smoothie. I make sure to get my five fruits and vegetables in in the morning and I put tart cherry juice in it. Do you have to drink it right before bed or it just needs to be in your body? It just needs to be in your body. because I've done it at bedtime, morning time, whatever.

57:54And here's the kicker. It can be tart cherry juice blend. So for all the people with tight pocketbooks right now, because things are expensive, let's be real about that. There's a blend in my grocery store that's about$5 or$6 as compared to the$8 to$9 full-on tart cherry juice. You can do that. You cut it with water. Just play around. But if you're having hot flashes, try some tart cherry juice. mechanism of action do we know i don't know i can only say it's a miracle and like that's how revolutionary it is in my life and i am going to literally plant tart cherry trees on my property that's how big i am into it that's so cool shout out to society of women in urology for supporting my speaking career yeah they're gonna have me as the keynote speaker this year and I am very excited and I will find a way to get my chard cherry juice before my speech.

58:52Well, you know, when you become a good speaker, you get to ask for things. And so you put it, you put it in my writer. Yeah, exactly. I love it. Dr. McDonald, it's been an absolute pleasure. Thank you for talking to us. Anything you want to bring in, we we traversed it all from ball pain to stage four breast cancer what else needs to get off your chest i think the last thing i want to put out there is sex is a very personal individualized thing and it's really interesting how differently it's treated for men and for women even though if you think about it like the majority of couples are men and women as couples but they're getting different messaging.

59:37So the men on the prostate side are getting, get back in there, get back in there, get back in there. I would say from personal experience, the emotions that you go through in cancer, Maslow's hierarchy of needs, like you're not thinking about sex for a year, easy after a cancer diagnosis. So I don't think you should pathologize sexual dysfunction or low libido in that setting. But I think like, it's when you're ready, right? So when you're ready, and you come back around, then we need to address it. And I think sometimes there's too much push to fix it early on. And then on the backside, no one's talking about it to women at all.

1:00:19And what affects one affects the other. It takes two to tango. And so it's very interesting to me that men and women are getting such different messaging. I agree. Totally. I mean, growing up in the urology department, it's like post-op week six is preventative Viagra for blood flow, right? And I think that's changing. I'm hoping to be part of it. Corinne, Matt, and I are writing up the HEAL protocol because we see, and especially the people who take care of radiated pelvises, if you don't do a little bit like Viagra early on, right? Like blood flow, tissue health. When you are ready at a year, the work to undo the skin damages, right?

1:01:02It's very challenging versus can we keep things... We're not telling you to have sex right now, but just skincare, healthy skin. Because if you want to open the door in the future, it'll be an easier door to open than saying, I'm ready now, let's reverse all of this years of skincare. I think that it's better than saying you need to have sex right now. It's certainly better than saying use it or lose it, which always makes me cringe. of like, no, let's just do some tissue care for if and when you're ready, it'll be less of a burden in the future. I don't know. I think we're trying to figure that out.

1:01:38Any thoughts on that? You know, I think it's how you're addressing with the patients, like what you said. But I'll tell you from my personal life, like I know the data on vaginal estrogen, et cetera, et cetera, but there are moments in this journey where it's just hard to care about that. Like if you're sobbing because of hormonal suppression, making you crazy, or, you know, I got arthritis, I'm coming to terms with being a 42-year-old surgeon with arthritis in your hands. I remember the day I felt it for the first time. I know where I was. It's vivid. That's another etched moment. Sometimes it's like really hard to brush my teeth, you know, like it's just like the basics.

1:02:20So the idea that something that feels like a luxury item and you're doing skincare for a luxury, you know what I mean? I just think it's hard to show up for yourself when you're an extremist. But I think also if we were more holistic and we had more things to help get people out of extremists, more resources, more support, more acknowledgement of the emotional side of cancer. And it's not just the emotional side because, you know, as Instagram tells me all the time, when you get upset, your cortisol revs and your nervous system gets dysregulated and all that stuff. Like it is your body. It's all your body, right?

1:02:59So like how do we make that cohesively calmer and less triggering? You know, like how do we put it all together? And someone says, I know you're not thinking about this yet, but I don't know. I just, I think right now the problem is it's too siloed and that causes logistical problems, financial problems, and we just don't get all of what the patient needs taken care of. Yeah. I mean, what I hear a lot just from my end of it is nobody ever told me, nobody ever told. It's like a lack of education instead of people were too pushy to get me back sexually. And so it's like education and then you do you.

1:03:43There's no metric of like you have to be on this, you know, sort of thing. But like, hey, we just want people to know what side effects of treatment can include. And if you want to, if you could stay on top of that and you want to, great. But certainly, you know, it's not, if when it becomes just one other damn thing in your day, it's too much. That's why I love the videos though, because when you're confined to 40 minutes, it's tough to go over everything, right? And that allows repetition. The patient can come to it when they're ready. And like all the resources are at their fingertips. I love that.

1:04:18Keep doing what you're doing. I'm excited about your speaking career. Me too. As a person who has a speaking career, it's fun. Watch out for traveling. Airplane, airplanes are brutal. I'll take my aspirin and walk up the aisles. Yeah, totally. Okay, we can find you on Instagram. Any other resources you want to give people, cancer resources, testicle pain resources, anything like that that's top of mind? So for the pelvic floor dysfunction, there is the Pelvic Health and Rehabilitation Center's videos on YouTube. Stephanie Pendergast is a pelvic floor physical therapist who does great stuff. And obviously our colleague, Rita Malik, is putting out some good stuff.

1:05:00So check her out. and cancer resources. I just started doing Cure Today. We're doing videos that just explain the basics in video format, grade, stage. I feel like one of the things I had that was an advantage was the jargon. I already spoke the language of doctors. So I find that you're having to learn another language in addition to learning medical information. So I'm trying to put those videos out there to help people as a resource. So that's on Cure Today. I love it. Thank you so much for joining us on the podcast today. Until we meet again. Thanks for having me. If you found this episode funny, helpful, insightful, please take a moment to follow, rate, and share the You Are Not Broken podcast with someone who might need this conversation too.

1:05:48That support is how this information reaches more people. And thank you. For courses, books, and my monthly membership and the Casperson Clinic information, visit kellycaspersonmd.com. This podcast and all content from Dr. Kelly Kasperson is intended for educational and informational purposes only, and this is not a substitute for individual medical, coaching, or psychological advice, diagnosis, or treatment. Always seek the guidance of your qualified healthcare professional with any questions you may have regarding your health. Never disregard or delay medical advice because of something you've heard on this or other podcasts.

1:06:28Thanks for being here, and remember, you are not broken.