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- [00:00]
Dr. Kelly Caspersen
This is a real good story about.
- [00:02]
Erin Sullivan Wagner
Bronx and his dad, Ryan, Real United Airlines customers.
- [00:06]
Narrator/Advertiser
We were returning home and one of the flight attendants asked Bronx if he wanted to see the flight deck and meet Kath and Andrew.
- [00:11]
Dr. Kelly Caspersen
I got to sit in the driver's seat. I grew up in an aviation family, and seeing Bronx kind of reminded me of myself when I was that age.
- [00:18]
Erin Sullivan Wagner
That's Andrew, a real United pilot.
- [00:21]
Dr. Kelly Caspersen
These small interactions can shape a kid's future. It felt like I was the captain.
- [00:25]
Narrator/Advertiser
Allowing my son to see the flight deck will stick with us forever.
- [00:28]
Dr. Kelly Caspersen
That's how good leads the way.
- [00:30]
Hey, friends, it's Dr. Kelly Caspersen. Welcome back to you Are Not Broken. Before we dive in, a quick favor. My new book is officially available for pre order. If you found value in this podcast, if it's helped you understand your body, your hormones, or your desire, this book is your next step in mastering midlife, the menopause moment, mindset, hormones and science for optimal longevity. Pre ordering makes a huge difference in getting this work into the hands of more people who need it. And I'll make it easy for you. The pre order link is in the show notes. And while you're here, like, follow and share this podcast. It's how we dismantle myths, normalize pleasure, and empower more people to own their health. All right, let's get into today's amazing episode.
- [01:20]
Welcome to the youe Are Not Broken podcast. Hello, I'm your host, Dr. Kelly Casperson, a board certified urologist, thought leader, and conversation starter on midlife living, hormones and sexuality. Enjoy the show.
- [01:35]
Hey everybody. Welcome back to the youe're Not Broken podcast. So for the longest time, we've just told people to be grateful for a cure when it comes to cancer. And more and more we're realizing we're probably causing more harm than good and not helping their quality of life. And the huge, huge elephant in the room, especially with female, female cancer treatment, is sexuality completely ignored. So I'm super excited to have on today Erin Sullivan Wagner, who I heard about through Ishwish 2025 when people started saying her talk was amazing, you need to have her on your podcast. So thank you for coming on my podcast.
- [02:09]
Erin Sullivan Wagner
That's nice to hear. Thank you for having me.
- [02:11]
Dr. Kelly Caspersen
What did Ishwish reach out to you? Were they like, specifically give us a talk about sexuality post cancer? Can you talk about, like, how that talk happened? And then, you know, your story is. I think people are very interested in that.
- [02:24]
Erin Sullivan Wagner
Sure, sure. So first of all, regarding the talk, I was Approached to talk about trauma and cancer. I work with a lot of clinicians around the country and so I didn't really think much about the topic until it got a little closer and thought, okay, wait a minute, I'm not a provider. Trauma and cancer, oh my gosh. I think they want me to talk about my trauma. And that was something that was a little new to me, Thinking about my story as being traumatic and it's just putting that label on it that I hadn't done. But I was forced to write down the story because I had found out through telling the story about my own personal experience that it was quite emotional for me, which tells me there's some trauma that after all these years, it's still emotional to tell the story. So I definitely scripted it out and noticed places where, ah, that was trauma, but really hadn't looked at it from that lens until I did that.
- [03:30]
Dr. Kelly Caspersen
Yeah. Did you want to share with us the journey now? You're this big advocate and you run nonprofits and you know, but you weren't.
- [03:37]
Erin Sullivan Wagner
Born that way, Was not born that way, didn't plan for it to be that way either. My experience was anal cancer in 2008. So I was diagnosed because I had blood on the tissue with a bowel movement and didn't have a history of hemorrhoids. And I was 40, almost 49 years old, and so wasn't menopausal yet at that point. And when I was diagnosed, they weren't 100% sure that it was anal cancer right away. When they saw the tumor, they thought it had gyn characteristics to it, and that was because it was an HPV tumor. But so there was some fear around my diagnosis, some advanced cancer. I think this could be more serious than just cancer. This could be advanced. And so for about 48 hours I had just terrorizing thoughts about all that I needed to prepare for. And 48 hours later, they took it all back really, and said, you just have anal cancer. It was almost said like, you just have.
- [04:36]
Dr. Kelly Caspersen
Yeah, anal cancer.
- [04:38]
Erin Sullivan Wagner
And it really did to me feel like almost nothing. Like cancer with a small C. It is survivable cancer. I was stage one.
- [04:47]
Dr. Kelly Caspersen
Yeah, you got it super early. The grateful thing is these things bleed.
- [04:51]
They let you know when they're small.
- [04:53]
Erin Sullivan Wagner
Exactly. And so really that Friday afternoon we walked out of there, my husband and I just high fiving each other that woo hoo, you know, stone cancer and had five weeks of radiation and chemotherapy. And, you know, then it got real serious in terms of fighting the cancer and the Being so sick from the radiation and dehydration and all of that. But throughout my journey, I was told that I would have no sexual health challenges. And it was interesting that I was told it because it wasn't like I asked about it.
- [05:22]
Dr. Kelly Caspersen
Interesting. So you didn't ever ask about it and what they told you was wrong.
- [05:28]
Erin Sullivan Wagner
Right? And I was treated at an NCI designated cancer center, you know, comprehensive cancer center, academic. What I was told, though is because the reason I was told that is because there are side effects listed with every treatment that you have. So chemotherapy I had mitomycin and 5 fu. And then for radiation, I had 25 rounds of radiation. So with those treatments, they list side effects that you can expect. And sexual dysfunction was listed always as a possible side effect. And they brought it up that, you know, we don't expect you to have sex. Sexual health challenges. And just to be really quite transparent about how difficult this was early on to have anal cancer. I didn't even know what anal cancer was at the time that I had HPV. I didn't know I had HPV because they didn't call it HPV back in the 80s. So I didn't know anything about this. When they said I had anal cancer, I thought, wonder why I can't have a sexy cancer like breast cancer. Or, you know, just something.
- [06:26]
Dr. Kelly Caspersen
The one that has parades.
- [06:28]
Erin Sullivan Wagner
The one that has parades and that people know how to ask questions, second level questions about, you know, that doesn't clear a room when you say it. Just, you know, there's just a lot of quiet. As far as the cancer type, that was a difficult just to have anal cancer. When I was told it was anal cancer, I remember thinking, why do I have anal cancer? And the colorectal surgeon said, you know, we used to only see this in gay men. Now we see it in women your age. And she let that sit there. And I thought, oh, there was this time that we explored anal sex. Wow, am I going to have to talk to my mother about this? And that's what went through my mind at that appointment, is why do I have analysis cancer? The dots weren't connected as you have anal cancer because you have hpv, that could be cervical cancer. You happen to have anal cancer. Had we been doing anal paps, we would have found it, but I didn't know any of that. So I just connected the dots of, wow, we had anal sex once. And this is what has come back to haunt me.
- [07:42]
Dr. Kelly Caspersen
And I think many doctors know that many cancers happen for no good reason. A cell Took a left turn instead of a right. And so then it multiplied. Right. Like, doctors understand. And that's what the data supports is most things. We don't know why. It's just a genetic fluke. That's it. But that's not how brains work. Right. Like, brains need to find the danger so I can identify the danger. So I cannot do that thing again that caused this thing.
- [08:08]
Erin Sullivan Wagner
Right.
- [08:09]
Dr. Kelly Caspersen
Like, we must find it. And so you have this huge disconnect, I think, especially in cancer, but certainly for a lot of things. Urinary tract infections. Right. Like, lots of things of, like, our brains to know why we want a definitive beast to fight, especially in this, like, war against cancer. Find the battle. And it's pretty unsatisfying to hear. Like, well, we don't know now. You know, we don't really know. It's very hard for brains to handle. So I think we probably don't do a good job understanding, like, how important it is to have definitive answers in a world where we don't have definitive answers.
- [08:44]
Erin Sullivan Wagner
So these are, you know, 48 hours into a colonoscopy where we. We are diagnosing something early on where you are truly terrified in the wake of a diagnosis, there's just pain and confusion and shock that is so hard to wrap your brain around what this new life is going to be. It's really difficult to explain to anyone who's never gone through this diagnosis, period. So you really, as a patient, can feel very vulnerable. Like, I've lost my voice. I don't know how the hell. I don't know how this happened. So almost a betrayal, really, of, I was religious about doctor's appointments, and, you know, I was followed so closely all my life, and what did I do wrong?
- [09:38]
Dr. Kelly Caspersen
Yeah, there was this movie about cancer. Seth Rogen was in it. Like, it was a humorous. But it was about a young man who had cancer, and he's in the office trying to figure. Figure out how this happened. Right. He's going through the same thing. So they. They portray it so beautifully. And the line that stuck out to me, he's like, I recycle. And like, it's like I'm doing everything right, you know, and in a very humorous way of sharing that processing of like, I don't get it, you know, and the cruelty of the universe is.
- [10:09]
Erin Sullivan Wagner
Like, it's just random thing I remember. And this is. Maybe I should have thought about how to describe this, but there is such a vulnerability in being told that you have something that you don't believe. I Don't feel like I have cancer. I don't.
- [10:25]
Dr. Kelly Caspersen
I'm.
- [10:25]
Erin Sullivan Wagner
I'm fine. There is such a vulnerability in it that you are so afraid of what's going to come out of their mouth. So whatever they say is going to be true. Doesn't matter really what's going on with you because you can't trust what's going on with you because you feel okay. So you want them to not say anything bad. It's almost like you're disconnected from. I don't need the truth. I just need you not to say it. It's a difficult thing as a patient to feel that much vulnerability about what's out of control.
- [10:59]
Dr. Kelly Caspersen
Totally. And there's so much in medicine now of, like, labs, like, I don't feel like I have high cholesterol, you know, like. Like there's so much in medicine that you. It's not something we sense, but it can still be discovered and it can still be very real. And I don't really feel like my blood glucose spikes when I have an orange, you know, but it's. It's there. And so you're so dependent on this external science to tell you what is going on in your body. It's a trip. That's not something that happens.
- [11:34]
Narrator/Advertiser
This episode is brought to you by Progressive Insurance. Do you ever find yourself playing the budgeting game? Well, with the name your price tool from Progressive, you can find options that fit your budget and potentially lower your bills. Try it@progressive.com Progressive Casualty Insurance Company and affiliates Price and coverage match limited by state law. Not available in all states.
- [12:00]
Erin Sullivan Wagner
Right. And when it came to sexual health, that wasn't on my mind. You know, for many, and I don't know if I can say most, but for many cancer patients, that is not even on the list of concerns at the time you're given a diagnosis. It's devastating. You know, you've got a battle ahead. It's the only thing.
- [12:18]
Dr. Kelly Caspersen
Do you think that's more true for women? And the reason I'm asking is in my urology practice and I'm solving my problem as I'm asking it. But like, a lot of prostate cancer, we end up not treating right. So it's not like there's some cancers that are like, Tuesday, clear your schedule. The pancreas is coming out. Right. You don't have time. But for a lot of men, like testicular cancer, prostate cancer, they bring up sex in the visit the first time. And so to me, I'm like, do you think it's a Female is socialized to dismiss the sexuality or. I don't know what the right answer is, but I've had plenty of men be like, I care deeply about my ability to have an erection.
- [12:57]
Erin Sullivan Wagner
Yeah. So that is such a good question and a big topic. I do think that we as a society are behind in the female side of things in terms of we don't think about preserving sexual health. We don't honor and respect women's sexual health, female sexual health, like we do men. Because of that, we do wait and watch. We do preserve their sexual health. There haven't been as many studies studying female sexual health.
- [13:24]
Dr. Kelly Caspersen
It's almost like you have to bring it up. You have to be suffering enough. It's like the burden is on you. I know I'm over generalizing, and it's not all people and not all cancers and all the things. But like, with men, the burden is on the doctor. You better bring it up. It better be on the consent forum. You better talk about it. Guys, I haven't had sex in 10 years. I still have to tell them, risk of erectile dysfunction, risk of ejaculatory dysfunction, risk of infertility, blah, blah, blah, blah, blah. And they're like, yeah, whatever.
- [13:53]
Erin Sullivan Wagner
I don't care.
- [13:53]
Dr. Kelly Caspersen
And it's like, that's still a body part involved in sex. We have to talk about it. And I think, especially in the breast cancer population, the amount of women getting double mastectomies, and I don't wanna speak for anybody, but it's like, we have data that lumpectomy and radiation's no better as far as survival than a double mastectomy. And women are cutting off these incredibly sexual, pleasing organs. And it's like, we're kind of in a rush. And some cancers, you have to be in a rush, but some cancers you can be like, let's see about what's important in life.
- [14:24]
Erin Sullivan Wagner
And, you know, that whole process of seeing what's important in life for patients comes in different ways too. So for some people, that cutting off the breasts is because I can't live with the anxiety of, do I still possibly have to deal with cancer in my life? And by cutting off the breasts, in some ways, I think women think, okay, I'm just gonna sacrifice it all. I'm just gonna give it all up, and I won't have that anymore. But I also won't have the anxiety around. You know, I wonder if there isn't some of that too.
- [15:00]
Dr. Kelly Caspersen
As you're talking. I'm like, thank God for us talking about this in this podcast. Cause number one, this is super difficult for everybody and probably difficult for people to hear. But it's like, even people hearing it know you're in your car, you're contemplating, hey, if this was me, what would I do? Blah, blah. Like, the fact that we're talking about it in society, then it's not such a. Because you're right. Like, we gotta cure cancer. You need to cut off my head to cure cancer. Cut off my head to cure this cancer. But then when the dust settles, we're really good at curing cancer, right? So the dust is gonna settle and you're like, oh, my sex life, my intimacy, my pleasure, my blah, blah, blah. And it's like, to kind of just normalize the conversation socially so that we're not. Because I'm like, we can deal with anxiety. There are other ways of dealing with anxiety besides cutting off our breasts. Let's talk about that. Because I think we do explain away the mastectomy of like, yeah, but then now they won't have anxiety. And it's like, is double mastectomy the only way to treat anxiety these days? I wasn't aware of it.
- [15:58]
Erin Sullivan Wagner
That's a really good point. I think until we as a society honor, respect female sexual health and preserving it as we do for males, I think until we get there, there's always going to be a little bit more of what you see that way. You've never heard of that, have you? That, oh, well, to preserve your sexual health. I think maybe this cervical cancer will handle it this way. You know, preserving sexual health with females is just not a discussion.
- [16:28]
Dr. Kelly Caspersen
I'm in such the male cancer world. Like, that's my only lens is the male. Women have bladder cancer, women have kidney cancer. But as far as, like, sexual side effects of, like, the surgery or the radiation or the medications, I'm in such a male world that I look at your world and I look at your website and I look at all this stuff and I'm like, it's insane to me that we have to point out to people that we're not addressing women's sexual health. Because my only cancer world is like, it's so ingrained in it. And then to me, I'm like, that's just such a gender bias that I'm like, why do they need websites to remind people that this is important? Because it's not obvious to people and it's not even.
- [17:11]
Erin Sullivan Wagner
I mean, even though we do better for male organ owners, we don't do great. We as a society don't Respect sexual health for the quality of life issue that it is. And we call it a survivorship issue because it's in survivorship that maybe when we're going back to our lives and we want our life back, that's when we are dealing with it, maybe more so than any other time. So it's obvious why it's called a survivorship issue. But this issue has to be addressed at the time of diagnosis so that expectations can be set, so that I know what to watch in terms of changes, so that I can get some help when I need it. So what happened? Just to go back to my own experience, I was told I wouldn't have sexual health concerns because I was young. They said 49, that I was young, healthy and sexually active. Nobody asked me if I was sexually active, but I was married, and that I wasn't having internal radiation rights, that all my radiation would be external. So I didn't expect to have any concerns. So when I did, so we were told six weeks after the last I was treated in March, and the end of it was in March of 2008. And in May, I was told that we could resume sexual activity, to go slow and use oil. Penetrative sex was impossible. I mean, not just uncomfortable, but impossible to the point that I would have passed out. It was so painful, so immediately painful, that of course, everybody, you know, he stopped, I stopped. It was concerning as to, oh, my God, what happened. When I went back in early June to say penetrative sex isn't working, I was speaking to a resident, and his first response was, you know, it sounds like you're dealing with it really well. And I said, you mean because I can articulate, Because I'm not dealing with it well, which is why I'm talking to you. And he said, well, I will get the physician, I will get the medical oncologist. But, you know, anal cancer is rare, so we haven't had that many cases. So the physician said, it is rare. We haven't studied anal cancer as much. And they said, really? Do you think it's the treatment? You think it's the cancer? Because I'm not trying to have anal sex. And he said, you know, I can tell you it's not us, it's not medical oncology. It would definitely be radiation that caused the damage. So we need a referral. So we got a referral there, and we continued to try and radiation examined me, and we've never heard of this before. Have you asked, have I done some. Is there something about what happened during Treatment that went wrong.
- [20:04]
Dr. Kelly Caspersen
Right? Right. Is this my fault?
- [20:05]
Erin Sullivan Wagner
Is there fault somewhere?
- [20:07]
Dr. Kelly Caspersen
Right? Or is it the fact that the anus is incredibly close to the vulva and there's collateral damage?
- [20:13]
Erin Sullivan Wagner
So what they said is, we'll get you a referral to a gynecologist, end of all of our disease clinic. And there then I was examined again and I needed a procedure to take the web, the scarring and the web scarring out and then told use it or lose it, but was then given dilator tools. So I'm into September now. I'm done with treatment in March and I'm in September when I am getting dilator tools, estrogen cream, any sort of moisturizer. So five months, six months later, before I'm starting to be treated and then get a referral to a pelvic floor therapist. So instead of all of that happening immediately after my treatment was done because I was cured, I mean, we were elated. I'm cancer free, all is good, nothing's wrong here. And then you are this cancer patient where, you know, you bargained with God on more than one thing to save your life here or that whole part of your brain that, you know, if I make it through, then it's, if I, you know, I'm going to do better, I'm going to contribute, I'm going to give back, I'm going to be part of, I'm going to live a more purposeful life. You do all of that and then when you're there, you're just so alone in all of this that you're really looking for the guidance that, that if you're not given, you're just alone. So six months later you're dealing with what should have been dealt with immediately after. If there was a process in place, if anybody had addressed this topic, normalized it at all, bring the issue forward that knew where to refer, knew what, how to treat. I ended up with irreparable damage. So years later I was told the menopause and sexual health clinic because I chased every treatment you could chase. I was told that I waited too long. The same facility said I waited too long. I didn't wait.
- [22:21]
Dr. Kelly Caspersen
This is just what's crossing my mind is like the medical field is so afraid of being held responsible or being sued, we invalidate you, we make it your fault. We pass the ownership. This is a suffering person who needs help healing. That's what we should be thinking about. Not like, well, it's nobody's fault except for maybe it's your fault. It's this very dismissive fear of getting in trouble for causing something when at the very, very beginning, you could say, radiation affects blood flow. It's very close to the vulva. Chemotherapy affects hormones. That's going to kick your menopause in. None of this is a leap medically.
- [23:00]
Erin Sullivan Wagner
None of it. It's really quite surprising that if we looked at humans as beings as opposed to with cancer, and it's really such a perfect storm, really. Sexual health wasn't on my mind either. It wasn't on my physician's mind. Nobody's talking about it because nobody even needs to talk about it at the time of the diagnosis. So it's so easy to turn a blind eye to it. Everybody, however, this is my first rodeo. I haven't gone through this before. I don't know what to expect, and I do need this. That's the part that I think is wrong and absolutely needs to change. You should have a process in place. You know, I'm a whole person that was 91% survivable that cancer I had. You know, I'm going to survive this. You know, I'm going to go back to my life. You need to care about more than just the tumor in the moment, because I'm going to live to be a ripe old age.
- [23:57]
Dr. Kelly Caspersen
Totally. I was by my first aha. But like, a strong aha. I was giving a talk at my hospital. This is years ago, I think. I had started talking about female sexuality before the podcast and stuff. And a nurse from the oncology department came up to me after the talk, and she's like, do you understand the rate of divorce after breast cancer? And I was like, I've never heard that there was higher divorce after breast cancer. And she's like, yeah, well, it's multiple things. Number one, you become somebody who's taken care of by somebody who doesn't usually care for people who are sick. So the relationship dynamic is affected just because of the status of what's going on. And she's like, and then the sexual health needs of these women who've had surgery, who've had radiation, who've had hormone blockade, who have not been given vaginal estrogen. It's just like the perfect storm of. And now they're possibly financially devastated by a divorce. And that really opened my eyes to, like, this is a big problem.
- [24:59]
Erin Sullivan Wagner
I had friends that said to me, kind of on the side, erin, what? You don't know how to give and receive pleasure any other way, but how did you guys let this happen? And I thought, you Know from the outside. That's a fair question. In the moment, when you're chasing treatment, you know, your connection to your partner. Our connection pretty much was intercourse. It was. It was a strong connection. When that didn't work, we just chased how to treat it, what to do. It changed the dynamic between us. We didn't think, really, this has to do with giving and receiving pleasure. Let's talk about it. Maybe we could do other things to give and receive pleasure. We were too caught up in also raising four kids and going to activities and living your life, but we were too caught up in fixing what we saw as so important and broken. We didn't look at it holistically, which is another thing that we need to help patients with. Set the expectation. There's a good chance counseling might help you. We needed it so bad and didn't realize how badly until things had eroded to the point that we didn't have the energy for it, but we needed it. It's funny how it's so difficult to talk to people you sleep with.
- [26:18]
Dr. Kelly Caspersen
Oh, yeah. Well, I mean, to me, you know, it's the overarching theme of, like, adults would have less issues if we actually understood adult sex ed. You know, it's like, how to communicate. What's the whole point of all of this? How to not just put hard things in soft holes, right? It's like. And again, my lens is talking to male patients more than female, but multiple men who. Your identity as a man is wrapped up in your erection. Like, it's not just hard things and soft holes. But it's like, I am a man because I get hard, right? There is a huge identity in there. And multiple men have told me. They're like, listen, I wouldn't wish this on any. Don't get me wrong, I wouldn't wish this on anybody. But after prostate cancer, after whatever treatment, I now have better sex with my partner than I ever did have when I thought things were functioning how they were supposed to function. But that didn't come easily because you have to actually, like, learn what society never told you and learn how to communicate and learn how to be intimate. And you went through a college you never thought you would have to go through. And they're like, I don't wish that college on anybody. But like, oh, my God, my sex life is so great now. I see the people who've gone through that, and it's not easy, but it's like, what if we gave that information to everybody, cancer or not, on this end of things?
- [27:46]
Erin Sullivan Wagner
One of the things that we recommend after cancer a lot when we're talking to people who are starting survivorship programs or sexual health programs is to consider that whole pre habilitation consider that, you know, we used to do patient centered care with Lamaze and where you have a group of like minded people. So these are people that are going into breast cancer surgery or people that are actually. It started with Minnesota. Urology is where I heard about it.
- [28:12]
Dr. Kelly Caspersen
Oh, good job, Minnesota.
- [28:14]
Erin Sullivan Wagner
Yeah, yeah. And it had to do with prostate cancer. So too few people able to educate so many patients. They decided to do a prehabilitation class with prostate cancer patients and their, and their spouse or, you know, partners could come to this. And at the class was the surgeon and a pelvic floor therapist to get them ready for the types of exercises that they could be doing now and have a baseline to know how they're doing and then what to expect week one and week two and week three to keep your patient actually compliant and understanding what to expect so the anxiety isn't so great. But also then have couples counselor or just bringing forward some of the psychosocial concerns that navigating intimacy isn't easy. And there are just some real obvious things that have to. And communication is one of them. And possibly people aren't at a place where they are communicating well. You know that the baseline at the time you have cancer may not be that you communicate well about sex now. So it's not going to get better.
- [29:18]
Dr. Kelly Caspersen
Yeah. Or the communication was sex.
- [29:20]
Erin Sullivan Wagner
Or the communication was sex. That's real common too. So all of these things could be in a pre habilitation class. So we really recommend, if you have the resources to. You could have somebody there with nutrition, you could have mindfulness, you could have yoga, you could have people there to give strategies of how we can do better, to help beings through this.
- [29:43]
Dr. Kelly Caspersen
I wasn't thinking about this a lot lately and I don't know if there's something to do on a national level or what, but the amount of resources that go into people keeping their hair with cancer treatment. And we've got the cooling caps and we've got the, the things. I don't know all the stuff, but it's like, and it's very public. Like people will post that on Instagram of like, I'm doing the stuff to keep trying to keep the hair and it might not work, but I'm doing the things. And at one point I was like, if we took that much energy into keeping hair as we did for just can we Give everybody pre treatment with vaginal estrogen. Like it's such low hanging, like, why isn't vaginal pretreatment a thing? Not for your shoulder melanoma, but like for pelvic health, for radiation, for breast cancer, for everything where it's safe. Why isn't pre treatment a thing? We care about hair.
- [30:37]
Erin Sullivan Wagner
That's a really good point. And like you said earlier, it's not a leap. We know what the treatment causes, we know what the side effects are, we know how that's going to impact us and the sexual response cycle. That it isn't just whether or not you can have penetrative sex or is there erectile dysfunction or pain with penetration, that it has to do with desire too. And so much impacts desire, including fatigue.
- [31:04]
Dr. Kelly Caspersen
Yeah, yeah, I was going to say exhaustion. I mean, I think just the healthcare team being upfront with people and it's this fear of like, well, I don't want to scare you from cancer treatment is like, she's going to do cancer treatment. If it means cutting off her arm, she's going to do it. But the fact that she actually knows that, you know, and now she knows that this might be a bumpy road, she might get some of these things, she might not get some of these things, but it is a bumpy road. It just gives you a little bit of a seat belt for the ride instead of being like, am I the only one? Did I mess this up? Everybody's saying this isn't a thing.
- [31:39]
Erin Sullivan Wagner
Yeah, you know, that is where our training that we do at after cancer. That actually is what it is all about, is giving a patient message, a 30 second message. And it's just to normalize that conversation for patients so that expectations can be set, referrals can be made timely. So patients need to be guided. And I remember as a patient I cared a lot about what the oncologist and my team said I should and shouldn't do. You know, it's in my bible. I would do what they said. And them not talking about sexual harm or anything that related to that suggested to me that it shouldn't be important to me. Maybe because I wasn't going to have any issues, but it's also not important. So having a message, a patient message I think is so important. Just to normalize that for patients and to give them just some kind of guidance here. On issues are common. They may be short or long lasting, they may be mild or severe. Issues are common though sexual health side effects and they could name, they're common. But we have resources to help those things you need to know about it now. Because issues that are addressed sooner versus later are better resolved. The chances are better. We're going to resolve them. I waited six months. It was irreparable. Penetrative sex would no longer be a thing. And that's just having 25 bouts of radiation treatment before I was menopausal.
- [33:13]
Dr. Kelly Caspersen
Take me between your journey to you now, being involved with these organizations and the advocacy. How did that happen?
- [33:21]
Erin Sullivan Wagner
You know, that purposeful life that I told you that you plan for when you're bargaining to live? I became a life coach and worked with patients, not just about sexual health, because I didn't know sexual health was going to be such a focus. This was a long journey for me on my sexual health. The challenges I was having, I didn't realize it was going to end the way it did. However, I did think the emotional challenges after being a cancer patient, the emotional spiritual challenges around that I thought were worth helping patients through. And so I became a life coach. And I did a lot of coaching with patients just on that topic. But I was so darn curious about their sexual health because I was going through it, that I would ask everybody, so how's your relationship changed? How has anything changed about how you feel as a sexual. And because almost unanimous, people had concerns whether, you know, not all of them were penetrative, sex related. Some of them were just, he is not attracted to me anymore, and I know he's not. We have nothing between us because he doesn't want to touch me, you know, never was that confirmed. But it was the feeling which changed the dynamic, which changed the relationship.
- [34:32]
Dr. Kelly Caspersen
The power of assumptions, too, right? Like the assumptions can ruin your life and be wrong at the same time.
- [34:38]
Erin Sullivan Wagner
And it was not a topic that was easily talked about between people. So it never got discussed. So that really just kind of inspired me to go back to the oncology community and say, you've got this so wrong. You've got to do better for your patients.
- [34:54]
Dr. Kelly Caspersen
Were they open to you? You had some clout because of your journey, I would think.
- [34:58]
Erin Sullivan Wagner
Well, I didn't have any clout because I wasn't a clinician. So I went to a urologist and a gynecologist. So not even an oncologist. The three of us, a patient, a urologist and a gynecologist, wrote a presentation for oncology nursing that this is what your patients need to know. And that was the presentation, and we gave it to oncology nursing around the state of Iowa. And I Was approached by the Iowa cancer consortium to why didn't I write a grant? Why didn't I apply for funding to actually develop the materials I was suggesting people needed? And so I did. We did. And we did for five years, do just that. So that's where the work began in 2016, creating materials. So educational materials and workshops. So how for the care team members. So nurses and navigators and social workers and radiation and physical therapists and then apps also, but on how to address sexual health and cancer care. So we understood first all the barriers to care. Got focus groups of patients and focus groups of providers to understand why aren't we talking about this today? What's that communication gap all about? And we learned all of those things, which there are many good reasons on both sides as to why it doesn't get discussed. Then we just developed education that just addressed every single one of those barriers. So that's what we do today. So we became a Nonprofit organization in 2022. So our mission really is that all patients impacted by cancer be screened for sexual health side effects as part of their care. A standard of care.
- [36:31]
Dr. Kelly Caspersen
Standard of care. Love that. The other thing, I love that it's so multidisciplinary because I think doctors are like, dude, you know how much I have to get done in this amount of time. And to take the pressure off of them of like, the doctor doesn't have to do all of this. Not that they don't care, but it's like the burden can't always be at the top of the stream. Right. It has to be in the house.
- [36:51]
Erin Sullivan Wagner
And honestly, even from a patient perspective, I didn't want my oncologist talking about sexual health. He. I had seven minutes with him. I wanted to talk about the cancer. Just that. But the care team. I was connecting with the care team at a deeper level than I was an oncologist.
- [37:09]
Dr. Kelly Caspersen
Yeah.
- [37:09]
Erin Sullivan Wagner
So it was the perfect place, really. The nurses and the navigators and the social workers and of course, those advanced practice providers, they definitely belong in our targeted audience of training for addressing sexual health. We just go a little deeper with them to actually evaluate and screen for it. Treat what they can, refer what you have to, but treat what you can in the clinic at the time.
- [37:32]
Dr. Kelly Caspersen
Yeah, I love that. I think that's something that ishwish often says is like, know who your referral team is, because you don't have to have all the answers. You're not going to know everything. And so know who can you ask? Who can you call? Who can you refer Refer to, let's share resources both for prescribers and the apps and then for the layperson who might be on the journey of cancer.
- [37:53]
Erin Sullivan Wagner
Sure. So we're really provider facing in terms of our education. To date we have been provider facing. So after cancer CO is the website and our resources for providers and care teams are workshops and courses. So those courses are online. So we have a sexual health specialist course for apps and navigators. And this year, in the next 60 days, we'll have the 32nd message course for the nurses and the navigators and the social. So still some of the same crossover. And it is learning that 30 second message. It's for those people that don't have time but have 30 seconds. They need to know how to lead into that and exit from it. So it's learning exit strategies based on patient responses. And then where do you refer the patient to? You refer the patient to someone in your clinic first, probably there's an app that wants to see your patient first. So there's course for the app and then there is a referral roadmap that we help them create. And that roadmap is who are your common referral sources? Not only from a provider perspective, but maybe even on the patient side from a support group perspective or some of the mindfulness, some of the integrated therapies.
- [39:03]
Dr. Kelly Caspersen
I love that.
- [39:04]
Erin Sullivan Wagner
And then for the patients, for the patients, I have been asked if we would create a patient. So I've been asked from providers actually. And so we are in the midst of applying for grant funding right now to create a patient force that will be all psychosocial concerns with learning pathways specific to certain patient populations or types of cancer, like gynecologic cancer or prostate cancer or breast cancer, head and neck cancer. And then also some of those pathways related to maybe adolescent and young adult or the geriatric or the metastatic. So we're doing that and then creating a social workforce. That's where we are on the journey and would love to have more involvement. So I'm thrilled to be here and I appreciate you highlighting it.
- [39:51]
Dr. Kelly Caspersen
Oh, well, thank you so much for coming on. Any final words you want, either doctors or patients or their lovers. Any final thoughts you want anybody to know?
- [40:00]
Erin Sullivan Wagner
You know, this is just not so mystical. It really is just at the core what all of us need to be emotionally healthy, it's that emotional intimacy. And it's also derived a lot of times through physical intimacy. We need to not forget that even that emotional intimacy, gotten to that in a lot of different ways is really, where we all find our peace and joy and the physical intimacy. The sexual health is just a real obvious pathway to it.
- [40:39]
Dr. Kelly Caspersen
Oh, I love it. Thank you so much for sharing your story, sharing what you've created. Again, the fact that we can have these conversations for people to listen to when they're not in the doctor's office so they can kind of think. And also for providers to be like, listen, you don't need to become sexual medicine experts. We just have to eat the elephant one bite at a time of like, know what the plan is. I love the 30 second idea. Like, what clinician can't get on board with a 30 second spiel? That's brilliant. So thank you so much for coming on today.
- [41:10]
Erin Sullivan Wagner
Thank you so much.
- [41:11]
Dr. Kelly Caspersen
Thank you for listening to this week's episode of youf Are Not Broken. If you want to dig deeper with me, sign up for my Adult Sex Education Masterclass where you learn adult things like communication skills, anatomy lessons and desire types, and how to talk to your doctor about sexual health concerns. If you want the Adult Sex Education Masterclass for free, join my monthly membership for more in depth exclusive content, more time with yours truly. A private podcast, coaching and educational empowerment and you can watch my interviews live and get them immediately without advertising. Head over to www.kellycaspersonmd.com for the membership and adult Sex ed Masterclass members. Get the masterclass for free. This podcast is presented solely for educational, entertainment and informational purposes only. I am a doctor, but not your doctor in this format and all of my platforms and guests, including on this podcast are not giving individual medical advice or practicing medicine. See and consult with your own care team for your individual needs and concerns. This podcast is not intended as a substitute for the care and advice of a physician, therapist or other qualified professional. This podcast does not constitute the practice of medicine, in case you were curious about that and no doctor patient relationship is formed. But I still love you. Using the information on this podcast or any of my platforms is at your own risk. Until next time, remember you are not broken.