From Misdiagnosis to Advocacy: Deb’s UTUC Journey

May 28, 2025

Transcript

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 a 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. I’m pleased to welcome today’s guest, Deb Wells. Deb is a survivor of high-grade upper tract urothelial cancer. She is CEO of the Wells Health Group, where she delivers specialized guidance in developing and implementing reimbursement and market access policies. During her 40-plus year career, Deb developed healthcare policy programs, national managed care contracts, and strategic marketing and planning. She held C-suite positions with both private and publicly held companies. Deb has been an advocate at and as a board member of the Women’s Board of the American Heart Association. She’s also an avid knitter and she loves to cook. Deb, thanks for joining our podcast.

Deb Wells:

Thanks for having me. I’m so pleased to be here.

Rick Bangs:

Oh, we’re excited to talk to you today. One of the reasons we’re really excited to talk to you is because you were diagnosed with upper tract urothelial cancer, and it’s less common than its bladder cancer counterpart and it preys specifically on the ureters and the renal pelvis. So like many people, particularly women, your diagnosis came after a lengthy delay and some misdiagnoses of urinary tract infections. So what were your symptoms and how did your diagnosis come about?

Deb Wells:

So yeah, you talk about misdiagnosis all around. I saw two neurologists, two nephrologists, and my PCP, who all continued to treat my symptoms as UTI. I had pain with urination, low back pain, which was different than the back pain I had… I’ve had five back surgeries, so I know what back pain’s like.

Rick Bangs:

Oh, my.

Deb Wells:

Yeah. And my favorite misdiagnosis in February of 2024 was genitourinary syndrome of menopause.

Rick Bangs:

Oh, okay.

Deb Wells:

So if you don’t know what it is, just throw out menopause.

Rick Bangs:

Yes, that’s true. Right, right. Kind of the catch-all.

Deb Wells:

Catch-all, exactly. So about six months later, I had blood in my urine. I knew I was in trouble. And the first time I went to the ER, they treated me, again, you guessed it, for a UTI.

Rick Bangs:

Of course.

Deb Wells:

And then I had clots like I had never experienced. Oh, my God, the pain as they passed through my ureter and urethra. So the first time I went to the ER, they did a CT scan and sent me on my way, this time with a kidney infection. So a little bit different.

Rick Bangs:

Oh, okay.

Deb Wells:

Then the following weekend I had the same symptoms, blood in my urine, very, very painful clots passing them. And this time they did a CT scan with contrast. So during this process at the ER, they were going through… And this really was so unusual for me, they were removing these clots and they were removing and removing and removing, and they finally had gotten to the point where they were going to send me home with more antibiotics for a UTI. And the urologist came in and she stopped us and she had tears in her eyes and she said, “Deb, we know now why you’re bleeding.” She told us there was a mass and that was about all she could get out. So Mike and I went home, we looked at each other and I opened my mouth to say, “I have cancer,” and he stopped me.

Rick Bangs:

Wow. Wow. Okay, so most bladder cancer patients would be familiar with the cystoscopy as part of the diagnostic toolkit. So what tests and procedures are going to be used for you as someone with upper tract disease?

Deb Wells:

Well, so you’re right on, Rick. That was the very next step was the cystoscopy. And it was a long two weeks later, and let me tell you, that waiting for two weeks just for the test, just for the test.

Rick Bangs:

Right, right.

Deb Wells:

They did a biopsy, they put in a stent and a Foley catheter. And so… Routinely now. When you ask about cystoscopies, I have them, I think about every three or four months now, checking my bladder for cancer. And aside from the very beginning when things were a mess, the cystoscopies have so far been clear.

Rick Bangs:

And do you have to have stents each time? Because stents are pretty uncomfortable from my experience.

Deb Wells:

Right. Just the first time. And believe it or not, they put it on a little string that was outside my little belly area and he sent me a message when it was time to remove the stent. And so I very carefully and gently pulled it out. I pulled, I pulled, I pulled, it was a very long stent.

Rick Bangs:

Oh, my gosh. You’re doing your own stent removal?

Deb Wells:

He said, “If you’re okay with it, that’ll save you a trip coming back into the ER.” I said, “You know what? After everything I’ve been through, I would happily remove the stent.”

Rick Bangs:

Wow. Wow, interesting. Okay. All right. So as a patient, we get these things called pathology reports and most of us find them very difficult to understand, and yours was no different. It was difficult to understand. But you got some help, so what’s the backstory there?

Deb Wells:

Yeah, so one of the things about working in healthcare industry is our network. And one of my colleagues is a radiation oncologist, and I confided in him. At the beginning, I didn’t want my clients to know I was sick. [inaudible 00:07:00], right? And so I confided in him and Rick, he spent hours with me. We went over that report line by line so I understood it in plain English so that A, I knew what was going on and B, he told me what questions to ask. And I mean, if I had not had him as a resource, I don’t know what I would’ve done. I just don’t know how I would’ve gone through the pathology reports. As you say, none of it’s in plain English. You have to look up every other word.

Rick Bangs:

Right, right, right, right. Well, thank goodness for your colleague there. That’s great.

Deb Wells:

Exactly.

Rick Bangs:

All right, so now how do you decide on the right doctor, the right hospital and the right treatment? Because that’s something all of us kind of grapple with.

Deb Wells:

Sure. And again, being in the healthcare industry, I sort of had an idea that I needed to search for a medical oncologist and a hospital close to me. And again, this is where my friend came in. He had met my medical oncologist at a conference and listened to her do a symposium and he said, “Deb, you need to get in touch with this office because she is doing the research. She happens to be within an hour drive of where I live.” And he said, “She is amazing.” And so I did that. I got in touch with her, with her office. My PCP was able to get an appointment after we sent her the results of the pathology test, that complicated thing. And I got in, I think, within four days.

Rick Bangs:

Wow.

Deb Wells:

Yeah. So once I knew that specific diagnosis of high-grade UTUC, I’m telling you, I was on the way. And the medical oncologist and I have spent so much time together and that rapport, I cannot overemphasize how much time you’re going to spend with your medical oncologist and the ability you need to have to communicate and ask questions, not be afraid to ask questions.

Rick Bangs:

Very important.

Deb Wells:

Right? Talking about the options. She told me about all the options and what the potential side effects would be. So I was as well-informed I thought as I could be for moving forward.

Rick Bangs:

Right, right. And it sounds like you were a participant in shared decision making, right?

Deb Wells:

Yes.

Rick Bangs:

You’re working together, you’re understanding the options and working together on making the right choice. So that’s the way we want it for all our patients.

Deb Wells:

Yes, exactly. And there’s a resource, I’m sure you’re familiar with it, called the NCCN, the National Comprehensive Cancer Network. And my oncologist happens to be on the board for the bladder cancer program. And so she showed us, and I work with this report with my other clients, so I was very familiar with it, fortunately, and I knew right where to go to find the first line therapy for what I have, the locally advanced metastatic stage four disease. So at the beginning, the surgical oncologist drew this picture of the kidney, like five fingers or four fingers, and he said, “You either have 95% renal cell cancer or 5% UTC or 1% high-grade UTC.” So here I am in the 1% of the 1% of the 1%. As folks said, it just kept getting better. It just kept getting better. The other report that they did was the DNA testing, and this is all, I think something new for us in medicine, right?

Rick Bangs:

Yeah.

Deb Wells:

And so I had 14 genetic mutations.

Rick Bangs:

14.

Deb Wells:

14. And when I got on the phone with my medical oncologist, she kept saying, “Well, we don’t usually see this.”

Rick Bangs:

Yeah, not so healthy. And thank goodness.

Deb Wells:

Yeah. “This is not something we see often.” Those words came out of her mouth so many times.

Rick Bangs:

Yeah. Not necessarily words you want to hear either, right?

Deb Wells:

Exactly. That’s exactly right, Rick. Yeah, yeah. So I get a monthly circulating DNA test, and at the beginning, the first test had numbers in it. I don’t know what they mean, but 115, and the five reports subsequent to that have all been zero. So right now, it’s working. Right now, the therapeutic that we have chosen, the enfortumab vedotin and the pembrolizumab, otherwise known as Keytruda, many folks calling the Wonder Drug, are right now controlling my cancer along with really, really good medicine.

Rick Bangs:

Wow. Well, and we’ve seen some really strong results in the last year or so around the combination that you’ve had, the EV plus pembro, enfortumab vedotin plus pembrolizumab. So that’s great. So that’s the treatment that you had.

Deb Wells:

Yes. And I’m still on. So the way that it works is that there’s a three-week cycle, and the first week I get both the enfortumab vedotin and the pembrolizumab. The second week I get just the enfortumab vedotin, and the third week I’m off, and then we repeat. So I’m on cycle eight, I believe. I just started cycle eight on Monday.

Rick Bangs:

Excellent. Okay, so what’s the recovery been like?

Deb Wells:

Well, I’ve a few side effects. And again, the wonderful thing about this relationship I have with my medical oncologist is there have been no surprises. She told me about absolutely everything that I would experience. Some things I have not experienced. I do not have the neuropathy that others have. And I’m very grateful because, as you said, I’m a knitter and boy, if I lose feeling in my fingers-

Rick Bangs:

Oh, yeah. Yep, yep.

Deb Wells:

Yeah, it’s not good. So the first foremost is fatigue, right? I think everybody gets that right. And it’s very unpredictable. One day, I’m great. And more at the beginning, the earlier cycles, I was very, very tired for a whole day I would spend in bed and I would never do that. But there were those days and it is unpredictable. And then the itching. I had to go see a dermatologist and she told me, “This could be very dangerous because an itch turns into a rash, turns into something very, very complicated,” she said, “where we’ve even had to hospitalize patients.” So I took that very seriously and my husband helps me with the lotion because it has to go all over my body. And so we have to work on that together. And the creams soaks in very, very nicely. And then after that, my skin turned to leather. So I am now alternating a good lotion with the itch cream.

Rick Bangs:

Okay. Interesting.

Deb Wells:

Interesting, right?

Rick Bangs:

Yeah.

Deb Wells:

And I’m still seeing the dermatologist. She still looks me over as well. I have nausea pretty much every day. I mean, that’s a given. I just take a pill and it goes away. That’s no big deal anymore, right.

Rick Bangs:

Right.

Deb Wells:

My taste buds have changed. And it’s not that I don’t enjoy a steak every now and then, but it just doesn’t quite taste the same. Nothing does. It just doesn’t. I still have an appetite, but I don’t really feel like eating because things just don’t taste right.

Rick Bangs:

Right, right.

Deb Wells:

So my husband, again, bless him, makes sure that I get protein. He makes sure that I actually do eat.

Rick Bangs:

Right. I think it’s great that you were given some insights into what to expect and that there weren’t any surprises. That’s really what we should all want, so that’s great.

Deb Wells:

Right. And one of the doctors that I met with early on as I was going through my selection process, told me to just, “Just go ahead and buy a wig because you’re going to lose your hair and you’re going to need it.” Well, that really did not sit well with me. I have not bought a wig yet, and I have not lost my hair. It is thinning, but I still have it. I did lose my eyelashes, and so the eyelashes I have on now are fake. Can you tell?

Rick Bangs:

Well, our listeners will never know. All right. So tell me, what would you want other people who’ve got upper tract disease to know? I mean, what advice would you give them?

Deb Wells:

So I would say learn all you can about what you have, because knowledge is power, right? And don’t get on these gossipy things where people are freaking each other out about, “Did you do this,” or “Did you do that?” because that’s not going to be helpful, right?

Rick Bangs:

Right.

Deb Wells:

So stick with places like BCAN where you’ve got good resources and you have people that will be your buddies, right? You can spend time with them and let them help you through your journey.

Rick Bangs:

Right, right.

Deb Wells:

So reliable resources, right?

Rick Bangs:

Very important.

Deb Wells:

Yeah, right? So if you’re tired, rest. Don’t fight it, just rest.

Rick Bangs:

Right. Because your body’s telling you something.

Deb Wells:

Yes, it’s telling you. It’s telling you. And I may be in bed reading a book, but I consider that resting.

Rick Bangs:

Yeah.

Deb Wells:

I can’t go out. I don’t go out and get in the crowds anymore. I realize my airplane travel and my airports and all that is not in my future for the next couple of years at least. So that’s fine. I’m getting settled in my place. I am a knitter, so I’ve got projects lined up for months.

Rick Bangs:

Okay.

Deb Wells:

And I’m trying to get some exercise. I need a knee replacement, so walking’s not the easiest thing for me.

Rick Bangs:

No, no. Very familiar. My mother has bone-on-bone, so I understand. I understand.

Deb Wells:

Yeah. So I just have to wait. They don’t want me to have the replacement. The orthopedic surgeon said, “You need to be off your cancer treatment, your chemotherapy a month before and a month after surgery.”

Rick Bangs:

Right, right, right. We got to time it, right.

Deb Wells:

Yeah. I’m just not ready to do that yet. I’m not going to stop my treatment for my cancer. It’s not that bad. It’s just not that bad.

Rick Bangs:

Right, right. Okay, so when we first spoke, you had not discovered BCAN, and you’ve mentioned it at least once in this conversation, and I know you did some exploring and that’s clear. So what did you learn?

Deb Wells:

I learned there is a large community. We are all over the place with a very, very small staff to support us, as a matter of fact. And as I mentioned, the website is so full of resources, and so whatever you need to further your education, it’s there. So you can’t be afraid of something you understand, right? Not that any of us really understand cancer, that’s for sure. But the more you know and the more you know about your options, the better. And with the community, you’re never alone. There’s people who are just a phone call or an email away, and people want to help each other.

Rick Bangs:

Very much so.

Deb Wells:

Right? So let them. I mean, that was definitely the hardest thing for me at the beginning was asking for help, allowing people to help me and to be with me.

Rick Bangs:

Right, right. Because you want to be independent. Right.

Deb Wells:

Of course. Of course.

Rick Bangs:

Okay, so now you’ve done a lot of advocacy work. I mentioned it in your intro, and it is a different context, but I was wondering what you’d learned there that helped you deal with upper tract or might help other bladder and upper tract survivors?

Deb Wells:

Sure. And it’s what we just were talking about is that people want to help other people. So let your friends bring you dinner or drive you to your doctor’s appointments. I will tell you, I have not sat once alone during my treatments. My girlfriends have been with me. They set up a sign-up board for the weekly treatments, and we have a blast. We watch a movie.

Rick Bangs:

That’s wonderful.

Deb Wells:

That’s the time for gossip. That’s when I’m there with all my girlfriends. And that’s surviving. That’s surviving, and that’s living. That’s what my heart disease taught me is that I not only survived heart disease, I’m thriving. And it’s the same thing with UTUC, right? Right now, I’m doing really, really great and I want to enjoy these days that I’m doing really, really well. It may not always be that way, I know that. But for now, I want to make sure that I’m enjoying everything. And it may sound trite, but now the little things to me, like when I get up and I hear the birds and I see the sunrise. We have a beautiful view of the sunset. We’re on the 12th floor. I mean, I just stand for an hour and just watch it. It’s glorious. So there are things you can do to participate in the world, even if you’re not out in it, right?

Rick Bangs:

Wonderful, wonderful. I think that’s great advice. We should all listen to that. Okay, any final thoughts?

Deb Wells:

Well, I’d say don’t be alone, as we’ve talked. Communicate with others and find your tribe either on Zoom calls or phone calls. I’ve chosen not yet to post on social media, but others might find that communicating with people like me might be helpful for them. And I’ve done that with the heart community. So I’ll say, go ahead and put my contact information out, and if people want to get in touch with me, I’m happy to answer questions or help. And if it’s a 2:00 in the morning phone call, well, then I know it’s necessary.

Rick Bangs:

Okay, great. And we’re going to come back to that in a moment, but before we do that, I want to thank you for helping us understand the urothelial cancer experience and the role of advocacy from the vantage point of upper tract disease. If you’d more information on bladder cancer, please visit the BCAN website, www.bcan.org. All right, now, in case people wanted to get in touch with you, you’re going to share a way that they can reach you.

Deb Wells:

Yes. You can send me a text on my cell phone, which is 210-367-9481. Or you can send me an email, and that’s my first and last name, [email protected].

Rick Bangs:

Excellent. Thank you, Deb. Just a reminder, if you’d more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Be sure to like, comment, and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Deb.

Deb Wells:

My pleasure.

Voice over:

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 B-C-A-N.O-R-G.