Transcript of I Got Bladder Cancer at 22 Years of Age with Kristen S.

May 15, 2023

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by and about the bladder cancer community. I’m also the survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast. This podcast is sponsored by the Seagen/Astellas alliance I’m pleased to welcome today’s guest, Kristen Skinner. Kristen had just graduated from nursing school when she was diagnosed at age 22 with bladder cancer, and she lives in Florida and she’s an LPN. So Kristen, I want to thank you for joining our podcast.

Kristen S.:

Thank you for having me.

Rick Bangs:

All right. So first, congratulations on becoming an LPN because we really need many more nurses in this country.

Kristen S.:

Thank you.

Rick Bangs:

You have a very unusual story from several different perspectives and one that demonstrates how important it’s to advocate for yourself at any age. So I want to start with some background. Your mother’s a nurse and you decide to follow her into nursing as well. So there you are in nursing school and you have some symptoms. So talk about what were those symptoms and how did your diagnosis finally come about?

Kristen S.:

I was having symptoms of bloating in my lower abdomen, burning with urination, and just my labs were not very good. My hemoglobin was low, my hematocrit was low. I was tired. I had some dark circles in my eyes and I just overall didn’t look very well. I went to several doctors, including my primary, who did not listen to me very much. They kind of dismissed me and told me very specific things that I was either emotional or I was just gaining weight because I’m just at that age.

Rick Bangs:

22, by the way.

Kristen S.:

Yes, 22, apparently we all gain weight. And they just told me that I needed to relax and possibly see a therapist. And I was like, “Okay.” Well, I didn’t want to take no for an answer, so I went and saw my gynecologist. I thought maybe it could be something dealing with my uterus. I went there and she told me, no, my uterus looks great. I’m perfectly healthy, I can go. So I was like, I still don’t believe it, and I happen to need another appointment. And a gynecologist who was not my doctor happened to be on call and he saw my file and he thought, “This looks interesting. Let me get into it a little more.” And we kind of met up and then he did just a simple abdominal ultrasound and we found a lesion is what they called it at first. And then he referred me to a urologist, and that’s where it all started.

Rick Bangs:

Okay. So you finally got a urologist on your team, which seems to make a lot of sense. So tell us about the cystoscopy, which again is unusual, like most of your story.

Kristen S.:

Yes, so I saw a urologist. It took me forever to get in to see him as well.

Rick Bangs:

It always does.

Kristen S.:

Yeah. I finally got in and they were doing the cystoscopy, and when I had entered the office, of course being in nursing school, I had known what cystoscopy was and I had known what it should look like. And what I saw was not what I had seen in pictures. Usually you see a thin, flexible tube that they say feels like a catheter, it’s very tiny, you don’t even feel it. It’s very comfortable. Usually people don’t have any issues with it.

When I went in, it was kind of like a metal rod, I would say. It was what they would call a rigid cystoscopy is what they did on me. And they didn’t use any topical like lidocaine. They didn’t use any sort of numbing at all.

Rick Bangs:

None?

Kristen S.:

None. I did not have anything.

Rick Bangs:

Oh my gosh.

Kristen S.:

So he went ahead and did that. And of course, as he was doing it, I was bleeding, I was crying, and that was how it kind of went. And then as I was doing my cystoscopy, he was sitting in the chair and I had my feet in the stirrups and he had scooted back his chair and he told me I had bladder cancer and that he was going to take it out. And then he got up and abruptly left the room, and that was how I found out.

Rick Bangs:

Oh my gosh. Okay. So at this point, so he tells you he is going to take it out, so we would recognize that as being a call for a TURBT. So he didn’t imply that he was going to do it right then, right? You knew that it was going to need to be scheduled, or did he leave you thinking that he was going to do it right then?

Kristen S.:

He left me thinking he was going to do it right then because-

Rick Bangs:

Oh gosh.

Kristen S.:

… I was still up in the stirrups. I still was undressed. I thought maybe he was going to go grab something to just pull it out. I didn’t know. Plus he said he was going to do a biopsy and then the biopsy never happened either.

Rick Bangs:

Oh my gosh. Okay. So eventually you all are on the same page that you’re going to schedule a TURBT, which is usually not done the same day or usually takes several days later just to get on the schedule. So how does your TURBT go?

Kristen S.:

It went good, I would say. I didn’t have any complications. I didn’t really have any pain, during the surgery or after. I will say though, before going in, I did meet with the surgeon who was also the urologist I had at the time, and they had told me that, “Oh, we’re going to take out your benign cancerous tumor.” And I was very confused by that and I was like, “I don’t very much understand.” And my mother and my fiance were there as well, and both of them were like, “What are you talking about? We don’t understand.”

And he was just very confusing on what was going on, and I was just trying to stay calm. This is my first surgery. I’ve never had surgery before, except when I was a child when I was like four, I think I got my tonsils out. So it was all very new to me. I was just ready. I did name my tumor Billy, and I was ready for Billy to go. I wanted him out. And so yeah, he took him out and he said he was going to take out extra tissue with the biopsy and he did not. He forgot.

Rick Bangs:

Oh my gosh. Okay. So somehow you end up going to a different clinic for another TURBT.

Kristen S.:

Yes.

Rick Bangs:

How does that evolve and what happens there and what do you find out?

Kristen S.:

So I went to another clinic because I was like, all right, I’m not staying with this urologist, I need to find a different one. And my oncologist had referred me to Advent in Orlando, Florida, and they said it had some of the most world renowned people that could help with bladder cancer. And I was like, “Well, I should go there then.” And I went there and I met with my other urologist who wanted to start our plan of action, whether I was going to need chemo or BCG or any of that type of treatment. But the problem was we did not have deep tissue biopsies, so we did not know if the cancer had invaded the muscle or not. So from that point on, we came to the conclusion I would have to have another surgery to then take out more of my bladder.

So then that was a second surgery. It was about a month later. I had it. Surgery went good. They said there was no complications. I came home and I was just in a lot of pain with urinating and stuff, and I was holding in my urine because I didn’t want to use the restroom because it caused me such immense pain. I was not eating, I wasn’t drinking. I just felt very sick. And I had gotten a bladder perforation because of the fact that I was holding in my urine. It stretched my bladder very thin, and it was already very thin right there after the surgery because they had taken out a nice chunk. So it just got a little hole in it. So I went to the hospital and I luckily did not need surgery. They just said I would have to have a catheter for two weeks. So I had a catheter for two weeks, and that was after the second surgery.

Rick Bangs:

So you didn’t leave your TURBT with a catheter?

Kristen S.:

No, I didn’t leave it with a catheter either times. Apparently, I guess it just depends on the age of the patient who’s getting the surgery. Sometimes they’ll do a catheter, sometimes they won’t. They said for me, because I am young, that they didn’t think I would, a bladder perforation was a risk, but it is not a high risk. So they didn’t think it would be necessary. And since I did so well with my first surgery, they thought, she’ll do good with this one. And it was just something that was unpredictable.

Rick Bangs:

Okay. Because I can tell you at age, age 48 apparently is old enough for the catheter. Okay. So now what about risk factors? Do you have any risk factors for bladder cancer?

Kristen S.:

I do not. No, I don’t have any cancer in my family at all. I think my grandmother on my father’s side had lung cancer, but she was a 50-year smoker. Other than that, no, we don’t have any sort of cancer at all. So it was nothing that could have predisposed me to having it, especially being 22. I’m not a 50-year smoker. I’m not in my 80s. I haven’t been around any toxic metals and stuff like that. So I had no predisposition to it at all. That would’ve made anybody think that I had or could have gotten bladder cancer.

Rick Bangs:

Okay. So you’re diagnosed at 22 and like all of us, you have to make some decisions about who do you tell, who don’t you tell, and then when do you tell them? So can you talk about how you grappled with these questions and what you ultimately decided?

Kristen S.:

I am an open book when it comes to many things. I feel that it’s best. And I felt very strongly, and I spoke to my mother and my fiance with it as well, I felt very strongly that I needed to share my story as I would talk to friends and family and coworkers. And they would all say the same thing that maybe not bladder cancer, but they all had a lot of females at least had a lot of the same situations where they were not taken seriously. And I felt very strongly that I needed to put some sort of emphasis or some sort of… Something just said that we need to be taken seriously when something happens and that we’re not just emotional and we’re not just gaining weight, we’re not just anything, that there could be something wrong.

Rick Bangs:

Right. Not just 22 and getting older.

Kristen S.:

Yes.

Rick Bangs:

All right. So that’ll make sense. And then how did you decide that you ended up with the right doctor and the right hospital, or institution, and you were getting the right treatment? How did you calibrate to right?

Kristen S.:

After I had gotten my second surgery, of course, I do live quite a while away from Orlando and I spoke to the urologist who gave me my surgery there, and they decided that doing treatment here where I live would be best. So we decided to consult another urologist in the town that I live in. They’re very well known for being a great urologist. Everybody knows who they are. Everybody. So I decided that I would try it out. Let’s just see how this urologist does. Let me hear what they have to say.

And I went to them and I now have been going to them for over a month now. And we sat down and we looked at all my papers. I got a PET scan done to see if the cancer had spread anywhere and it hadn’t, thankfully. So we decided that we were going to go with an aggressive form of treatment that may not be chemo. We’re doing BCG. So it wasn’t chemo, but we were going to be aggressive with it and we were going to try and make sure that we got all of it. Even if there’s none left in there, we were going to make sure we were going to get everything out.

Rick Bangs:

Right, right.

Kristen S.:

So because I’m only 22, we wanted to make sure that we get this and we get this good.

Rick Bangs:

Right.

Kristen S.:

And we’re all on the same page with that. And they respected me and they listened to me with my concerns when I had any, if I had any. And that made me feel a lot better with the urologist.

Rick Bangs:

Which is so incredibly important. And I don’t know whether our listeners are picking up on this, but all of this is very, very recent. This is not-

Kristen S.:

Yes, this was in December, I believe 12th, is when I found out. And then the 20th was my first surgery. Then I had my second surgery in February, and now I just finished my last six weeks of BCG yesterday.

Rick Bangs:

Yeah, it’s pretty current.

Kristen S.:

Yes. Still going on.

Rick Bangs:

Right. So we were talking about this relationship with the doctors, and I hear doctors and nurses, they talk about shared decision making, which essentially means that the doctor and the patient mutually agree on a decision. But it’s really more than that. It’s the doctor, the patient, the caregivers, the partners, the family. So can you talk about the role that your family members played, particularly your mom, who as a reminder, is a nurse? What role have they played?

Kristen S.:

So my mother, she played a huge role in it. She understood that when I told her that I felt something was wrong, and I looked her in her eyes and I told her, I said, “I know my body. You have taught me to know when something feels wrong. You have taught me to fight for what I feel.” My mom’s a very strong-willed woman. She is an amazing woman. And she just taught me to always make sure that if I feel something, that I make sure I voice my opinion. And there were times when I would get beaten down and I would feel as if, okay, maybe I am just crazy in a way. Maybe I just need to see a therapist. Maybe it’s all in my head like they’re saying. And she was there to back me up and tell me, “No, I can see that you don’t feel good. I can see that there is something wrong.”

And she would advocate for me as well as my fiance. He was amazing through the process as well. He made sure that if I was laying in a hospital bed and I was just feeling broken down, or I was even laying in our bed and I was feeling broken down and I just felt like I couldn’t continue, I couldn’t keep looking for a diagnosis when nobody was listening, he would make sure that he was helping me find different doctors. He was helping me with my treatments. He was helping me with everything that I was going through.

Rick Bangs:

Wonderful. Wonderful family and support there. So you’re early in the treatment phase, but talk a little bit about how that’s gone.

Kristen S.:

Yes. So I started the BCG six weeks ago on Monday. So yesterday I did my last one for six weeks. So I’m very excited about that. I finally finished it. It’s been a very difficult time for me. Of course, doing the BCG, it comes with risk. A lot of risk are just feeling sick in general, more often. My labs haven’t been the best because of some of the BCG and I do have a lot of the symptoms of it, especially with the burning with urination, the urgency, stuff like that. It’s been very hard on me, not even just physically, but mentally. It was very hard for me to cope with the fact that I would have to continue to do this another week and another week.

Finally, when I would start feeling better, I would have to go back and get more done. And it was very hard for me to cope, but I did it. And then now in six weeks, so I’ll recover for six weeks and I’ll have another surgery to take more of my bladder out to see if the cancer has come back. If it has come back, then we will have to start a new plan of action, possibly chemo. We will go from there. But if it hasn’t, then we will do three more rounds of BCG. So I still have a long way ahead of me before I am finished.

Rick Bangs:

So let’s talk about the journey through today and that experience. How did you manage the stress and emotions for yourself and then also for your family?

Kristen S.:

My family, I would say, is a unique family. We call it the Skinner Luck. A lot of my family members, we all have gone through some very rare disorders or diseases. So one of our biggest things is we try to make the situation as lighthearted as possible, and that includes making jokes. Like I said earlier, I named my tumor Billy. I named my bladder Katherine. I named my urethra Karen. They all have names.

Rick Bangs:

Wow.

Kristen S.:

It felt better if I would say I’m fighting Billy rather than I’m fighting cancer. It just feels better for me. And then we make jokes. There is times where I’ll wake up or I’ll be in a room or I’ll just be doing something, and I do get down, sad about it. And I think to myself, I don’t really understand where it came from, why it came, why it’s happening to me. Especially at this age. I never would’ve thought, ever at 22 that somebody would tell me I had cancer, let alone bladder cancer.

And so it’s been hard. But of course, like I said, having family, I have six siblings, so I do have lots of siblings around me. And they definitely have helped me to definitely just be happy about it. And they’ve been very open where if there’s days where I’m sad, they allow me to be sad. They don’t tell me, “Well it’s not that bad,” or they don’t tell me, “You should cheer up.” They allow me to be sad when I need to be. And then we all kind of make jokes about it though. We keep it very lighthearted and we just try to keep going because time doesn’t wait for anybody. You got to keep going.

Rick Bangs:

Right. So that’s certainly going to be a part of getting through the hard times, what you’ve just talked about and how your family reacts to it and all. You’ve got this great support network. But what were some of the hardest parts for you and how did you get through them beyond what you’ve already hinted at?

Kristen S.:

I would say some of the hardest parts for me is, and I still deal with them currently, is the waiting factor of, I know I’m doing these treatments and I am crossing my fingers and my toes that they’re working. But of course, unless I get a cystoscopy every day, I’ll never know if they’re working. I will always have this feeling on my chest and on my shoulders that it could be back and it could be back with a vengeance. I struggled with a lot of my own mortality, of the thought of not being here anymore. Especially at the age of 22. I was like, I feel like I haven’t done enough. I feel like I haven’t said enough. I feel as if something, I just don’t feel ready to go. And that’s been very hard for me to try and come to terms with the fact that I have cancer and I have to change my lifestyle. I have to change what I do in a day.

I will never go back to being my younger self that used to chug Monsters and go to work for 13 hours and then go home and do all of these things. Now I have to take care of myself and I have to really think about things before I do them. And what is the risk factors of doing certain things, especially with my bladder being surgically cut twice. And it’s been hard to try to remember that I can’t be who I used to be, but I can still be me.

Rick Bangs:

Right, right. It’s kind of like somebody opened this trap door that you didn’t know was there, and you got swooped down into the trap door.

Kristen S.:

Yeah, I’m just trying to climb out, but sometimes fall back a little bit.

Rick Bangs:

Yeah, I mean particularly at 22, the trap door was ferocious enough at 48. But at 22, wow.

Kristen S.:

Yeah. It just wasn’t what I was expecting. But I’m coming to terms with it, still. I still wouldn’t say I’m at terms with it. I’m still struggling with it and I feel like it’ll be a while before I come to terms with it. But my mom and my fiance and my family and my doctors and everything have all told me that comes with time and that I’m young and I have a good outlook on it and I have a good treatment plan and my prognosis is good. So I just have to keep those things in mind and try to not think about mortality or pain or anything like that. I just have to try to think about the better parts.

Rick Bangs:

Yeah. And it will take a little bit of time. You’ll get there. So talk about BCAN. And I understand you’re a patient of Dr. Guru Sonpavde who I do some work with, and he’s a member of the BCAN Scientific Advisory Board. And we actually had him as a guest on the, I Can’t Get Chemotherapy to Treat My Bladder Cancer – Now What?, that was podcast we did in 2021. So was he your introduction to BCAN and what did you discover and how did it help you as a patient?

Kristen S.:

So my first discovery was actually my fiance brought it up to me and I was like, oh, I’ll look at it later and then never got around to it. And then I had saw Dr. Sonpavde for my initial oncologist appointment and he was like, “Have you heard of it?’ And I said, “I heard of it. I didn’t really look at it.” And he goes, “You need to look at it.”

He kind of told me, he was like, “Go on there.” He’s like, “You don’t even have to do anything. Just go on there, scroll around, take a look at what’s on there.” And I was like, “Okay.” He’s like, “I promise you,” because I told him that I kind of felt like alone in my situation. And he’s like, “I promise you you’ll find at least one person who understands.”

Rick Bangs:

Yeah.

Kristen S.:

So that’s what I did. I got on the website and I was doing the filters and I was filtering through exactly young adult, non-invasive, BCG. I was kind of just filtering it to my situation. And I found some pretty cool stories and it did help me to feel a lot better as if I’m not alone. There’s people who have gone through it as well.

Rick Bangs:

Yeah. Yeah, I think finding people who are like you is so important. And BCAN’s got the Survivor Matching program and the Inspire website where you can do just what you talked about and find people who are like you, who are close to you geographically. So I think that’s an important part.

So I want to talk a little bit about the cost of bladder cancer. And I want to be clear with the audience that you and I discussed the fact that we were going to have this conversation. And the reason I want to talk about it is because bladder cancer has one of the highest cost per patient lifetime of any cancer. And if you couple that with the fact that financial toxicity is one of the many side effects of cancer and adolescents and young adults struggle with the financial toxicity more than the average bladder cancer or cancer patient because they’re so young, it’s so early in life and they haven’t built up resources. I wonder if you would be willing to share a little bit about your experience on the financial side.

Kristen S.:

Of course. Yeah, it’s been hard. I will definitely say that. I am still currently doing several payment plans to pay off surgeries, anesthesia, medications, everything of that manner. I will say though, thankfully since my mom’s a nurse, she does have very good insurance. So that has helped out a lot.

Rick Bangs:

But it’s expensive, right?

Kristen S.:

Yes.

Rick Bangs:

Even with insurance, you still have co-payments.

Kristen S.:

Yes.

Rick Bangs:

And co-insurance and deductibles. You have to talk about deductible plus co-insurance, plus co-payment. So it adds up.

Kristen S.:

It does, yes. It adds up too much.

Rick Bangs:

And then you have to take time off work.

Kristen S.:

Yeah. So that was another thing that was hard was of course, me and my fiance, we do try to support ourselves. But of course, I’m only 22, he’s only 23. It’s been hard because I did have to take time off and in this economy, you got to have two people working or else you’re not going to make it very far.

Rick Bangs:

Right.

Kristen S.:

So it was definitely difficult having to try and navigate our finances and it’s been stressful, but of course, we have the support of his family and my family as well, and they’ve been very helpful with that. So I couldn’t be more thankful.

Rick Bangs:

So if you could give some advice to people who are trying to manage the costs and there’s tons of unknowns as you and I know, you don’t get the cost estimate when you’re sitting in front of the doctor, like you would if you were buying a car or something like that. So any advice you can offer to other patients?

Kristen S.:

I would say that if you need help, don’t be afraid to ask. If you have somebody that you are able to ask, I promise you it’s better to ask and be turned down than to just never know or to sit there and struggle. Because you never know, maybe somebody will have the resources to be able to help you. Because that was another issue is that I didn’t want to ask for help. I’m only 22, I should be able to make it. But you got to be able to ask for help.

Rick Bangs:

So I want to close with some other advice because there could be another person who’s young and experiences something unusual with their body. So what advice do you have for somebody like that?

Kristen S.:

I would say just make sure you listen. There’s always going to be a doctor who believes that you are faking it or believes that you are dramatic or anything. And you just have to remember that this is your body, it’s not theirs. They don’t actually know what’s going on inside. You need to listen to yourself and just know that at the end of the day, even if you do all of these tests and they all come back normal and good, that’s good. It’s good to know that you are coming back normal because even though there was that 1% chance that something could have been wrong, at least you know that you tried. You tried very hard. And at some point, I believe you will find an answer and you just have to make sure that you really advocate for yourself because no one else is going to do it.

Rick Bangs:

I think that’s a great advice and a great way to close our podcast. So Kristen, I want to thank you for sharing your very unusual story and giving us an understanding of the experience of an adolescent and young adult survivor of bladder cancer and the critical importance of advocating for yourself as a patient.

Kristen S.:

Thank you for having me.

Rick Bangs:

If you’d like more information on bladder cancer, please visit the BCAN website, www.bcan.org. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1 (888) 901-2226. That’s all the time today. If you liked this podcast, never miss an episode by clicking on the subscribe button on your favorite podcasting platform. And a reminder that rating our podcast helps us reach more people. Please feel free to leave a review as well. Thanks for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Kristen.

Kristen S.:

Thank you.

Announcer:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network, or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.