Transcript of The Power of Support -Tim’s Inspiring Bladder Cancer Fight

September 3, 2024

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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 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, Tim Stanley.

Tim is a retired educator who taught for many years and was honored to serve as school principal for many more. His goal was to lift up his students, teachers, parents, and community. He believes in seeing the best in everyone and building on that. Tim and his wife are two-time cancer survivors. He had a pancreatectomy and a splenectomy in 2017, ultimately determined to be a benign neuroendocrine tumor. He was diagnosed with thyroid cancer in 2020, which resulted in a thyroidectomy in 2021. And in 2023, he was diagnosed with high-grade carcinoma in situ, we call that CIS, in his bladder, which did not respond to treatment. Consequently, he made the difficult decision to have a radical cystectomy. Tim, thanks for joining our podcast.

Tim Stanley:

Well, Rick, it’s an honor to be here. Thanks for inviting me.

Rick Bangs:

My pleasure. So like so many of us, you had never heard of bladder cancer even though you were already a two-time cancer survivor. So how did your particular diagnosis happen? What were your symptoms and how did the diagnosis come about?

Tim Stanley:

So Rick, in August of 2022, like many of us, I had blood in my urine and that was an immediate red light go to urgent care. I had a history of kidney stones, two rather serious attacks, so I’d seen blood in my urine before. And quite honestly, I thought, here we go again, unfortunately. But I headed for urgent care right away where they did a CT scan, did some blood work, and they said, “Yep, you’ve got kidney stones and there’s a stone in your bladder.”

So I walked out of there thinking, here we go again. And they did refer me to and said it would be good to get with a urologist, of course. And my urologist from the kidney stones before had retired. And so I went looking and it was hard to get an appointment right away. It was slow. So I ended up, we live in Virginia and I found a urologist in D.C. and got an appointment and he looked at everything and said what I had already thought and said we’ll do what I’ve now come to know is a TURBT in January. So found out in August. I never had more blood in my urine until… I didn’t. And so I showed up in January, never having ever any thought of cancer there. It was just stones, I’d done stones before.

Rick Bangs:

And that was the logical conclusion.

Tim Stanley:

Yeah.

Rick Bangs:

Okay. So you had any risk factors or no risk factors?

Tim Stanley:

I never smoked, not really anything. I’m 67 years old at the time. I’m a guy. I had thyroid cancer, I had that neuroendocrine, my dad had colon cancer and multiple myeloma, but I really had no risk factors. Right. Nothing. Okay.

Rick Bangs:

All right. And so you had a TURBT, but I think yours was a little rougher than it is for most people. So tell us what happened.

Tim Stanley:

So Rick, in January of 2023, we went to the pre-op very early in the morning, my wife and I, later to be joined by our daughter and her husband. And in pre-op, the nurse said, “You know you’ll be going home with a catheter.”

Rick Bangs:

That was a surprise to you?

Tim Stanley:

Yeah. My only experience was catheters would’ve been when I was out of it for a couple of surgeries I’ve had, but I really didn’t think anything of it. When my wife came back, I told her and we’re like, “What? A catheter?” So our urologist did the procedure and when I woke up in post-op, I was by myself. He came through and many of us have woken up and you’re not totally with it yet. And all I remember him saying was, “I got the stones and there was a tumor in your bladder, and I got it”, but nobody else, my wife wasn’t there, no one was with me. And honestly just went over my head.

And I was released from the little surgery center without a catheter. I had urinated a little bit of blood, but I mean a little bit of blood and nothing else. So on the way home, our urologist that did the procedure called us on the way home. He had never seen my wife. And he said, “Look, if you can’t pee, you’re going to have to go to the emergency room.” So it was just a huge surprise, all of this happening. And then we got home and I was reasonably comfortable coming out of it, sitting on the couch. But by eight or nine o’clock at night, I was getting ready to scream in pain because all the urine, nothing was passing.

So Melanie, my wife, raced me to urgent care where they immediately scanned my bladder, saw how full it was, and put a catheter. And it was just really just a terrible experience. All of it was awful. I mean, we came home at one or two in the morning after going to the surgery at five in the morning. So it was just, we were shocked. And I came home with the catheter and Rick, I always remember when they put that catheter in saying to Melanie, “My life will never be the same.” And boy, I didn’t know what I was saying. I didn’t realize. But that’s again, I had the catheter for seven days. And so that was a whole brand new experience that was unexpected. Nothing was set up for me. So it was a rough experience for sure. Yeah.

Rick Bangs:

Now, the doctor wasn’t expecting you to have any kind of bladder cancer on the front end of this, right?

Tim Stanley:

Not that had ever been mentioned. That was just the stone in my bladder.

Rick Bangs:

Just stones. And your diagnosis was CIS or carcinoma in situ, which is flat. So not normally going to show up on a CT, at least as far as I know.

Tim Stanley:

Right.

Rick Bangs:

Okay. So, all right, so this is all connecting some dots here.

Tim Stanley:

Yeah. All right.

Rick Bangs:

So you get some very divergent opinions on your diagnosis, how serious it is. And I think most people would’ve gotten whiplash based on what you told me. So tell us about that experience.

Tim Stanley:

That first TURBT was in January, and as many people listening to this podcast know they want to have six or eight weeks for your bladder to die down and settle before they take another look. So he went back in for the second TURBT in March and dumped in installation of Gemcitabine and said that he hadn’t gotten it all, that there was the CIS. And at that point, it’s T1, grade three, and he is telling us that the standard, what’s the right word, Rick? The standard of protocol procedure-

Rick Bangs:

Standard of care.

Tim Stanley:

Standard of care is BCG. So at that point, we know it’s cancer, but we’re very optimistic and positive. Our urologist says, “Look, no worries, you have CIS. This BCG really works for a lot of folks.” So March, that was the TURBT, and then comes the BCG for six or seven weeks. And then somewhere in there Melanie and I decided that, and our daughter’s been involved in this a lot and some family and friends, but we decided that we wanted to get another opinion. We were still really positive. So we found another urologist who happened to also be an oncologist, a Dr. Kim.

And he, so this is now in the very beginning of July, and the whiplash really happened in that first meeting with him. So we sit down and we just are shocked. He tells us that he’s going to respectfully disagree with the first urologist, that my cancer was aggressive and dangerous, the T1, grade three, high grade cancer. He said he really needed to go in there and take a look himself before he could suggest what to do. But we had always thought, Rick, it’s never in the muscle. It was non-muscle invasive. We thought, okay. And many people said, “Yeah, thank goodness it’s not in your muscle. Thank goodness it’s not in your muscle.” And I think all of a sudden when Dr. Kim said those words, it was like a huge whiplash. It was a wake-up. I mean, we cried. It was devastating to hear that it was that aggressive. So he went in and did another TURBT.

Rick Bangs:

And so how do you know that you’ve got the right doctor with the new one?

Tim Stanley:

I’ve got a couple of things about that, but my wife would say to anyone who asked her that she would say, “He gave us time. He sat with us.” And so I would say very clear expectations about what was going to be happening, give really clear explanations about procedures, about choices. He was willing to look us in the eye and tell us the hard truth.

This is scary, this is dangerous. And he had empathy. But Rick, I mean, he spent time with us. He just answered all of our questions. Like all of us, we’re also doing our research. We all have these Google machines and we’re checking out and we know people. So this guy also, honestly, we first heard about him from our BCG nurse, and she talked about what a good person, but then we did our research. But finding the right doctor and building that relationship and trust, I think is so important. And it’s a gift when you find them.

Rick Bangs:

Yeah, it’s absolutely critical. Absolutely critical. So you’re navigating what I’ve called the slippery slope. And we had a podcast on that. It was number four. You have non-muscle invasive bladder cancer. It’s high grade. So you had a choice at this point between Gem/Doce and a radical cystectomy. And you chose the radical cystectomy rather than the chemotherapy, the Gem/Doce. So how difficult was that decision for you, and how did you reach it?

Tim Stanley:

So hard, Rick. So much of this really is hard, but you wake up and you’re grateful for what you’ve got. And really, honestly, we did our research and hopefully we can talk more about BCAN in another question, but I’m just going to say that BCAN and other, like a Mayo Clinic, a Hopkins websites, we talked to people. We were lucky enough to have a couple in our Quaker community who, one of them was a retired oncologist. He and his wife, who was also a doctor, spent several different lunches, visits with us explaining everything. Our daughter was invaluable. I made her, she’s listened to your podcast too, because I made, or I asked her to listen. You don’t make your daughter do anything. You ask her. And she’s been so invested in this, and she listened to one. You did one with a Dr. O’Donnell from Iowa.

Rick Bangs:

Right, Mike O’Donnell, yes.

Tim Stanley:

Yeah. And she said, “Dad, you’ve got to reach out to him, try talk to him, because there’s a lot of promising things there that he’s working on that are amazing.” And I was like, “Okay, number one, I’m never going to be able to find a way to actually contact him. And number two, come on, he’s a leading researcher in bladder cancer and he’s not going to have time to respond to me.” Well, Rick, I emailed him, and I bet within an hour, he called himself Dr. Mike, he responded and was very positive about how I good candidate for Gem/Doce, a real good candidate and talked about other options he might have.

So again, it’s this process of utilizing research, friends, BCAN. I will tell you that the retired oncologist, one day when he and his wife were explaining things to Melanie and myself said, he looked at me and he just looked me right in the eye and he said, “So what do you want?” And I don’t think I really understood that he was asking me, so how important is it to keep your bladder? Because I had an immediate response. My response is, I want to sit on the porch in the rocking chair talking about and watching our children and our six grandchildren who are a beautiful part of life. I want to watch them grow up and graduate and get married and have kids. And I always, that was like, okay, the gold standard, what do I know, but based on everything I’ve learned, the gold standard really is the highest degree of possibility for getting rid of the bladder cancer was the radical cystectomy.

And of course, as you know, before you have that surgery, people tell you it’s a major surgery, but you don’t know what you don’t know. And so we really, with all of these little families and friends and community, but I made the decision, okay, we’re going to take it out. Let’s just get rid of it. And it’s so hard, and I felt so blessed to have all those resources. And I really have to mention here from the BCAN side of things, there is a survivor to survivor part of their program. And I got matched up with Doug Cappiello and my wife and I will would say he was a lifesaver. He’s a survivor, he had a bladder cancer, and he had his bladder removed. And he just provided tremendous amounts of information while listening, having empathy. So again, I’m actually wearing my little bladder cancer walk shirt right now. And it reminds me that it says never go alone. And I think this slippery slope, it really is, and it’s so hard. But having the help from all those different people made a big difference.

Rick Bangs:

So Doug is on the BCAN board and the conversation that you were having about what do you want from this is what they call a goals of care. And it’s a conversation that should be continuous because your goals at a certain point in your treatment could be very different from your goals later on. So these are really critical thought-provoking questions, and it’s actually one of the key questions that’s part of the book, Being Immortal, if our listeners have read that and if they haven’t, I strongly recommend it. So I want to talk about your urinary diversion. So you had a choice, and there are the three types, the ileal conduit, the Indiana Pouch, and the neobladder. And you chose an ileal conduit. So what factored into your decision to get that, and would you make the same decision again today?

Tim Stanley:

Oh, Rick, you’re asking the hard questions, right? These are such hard decisions. I think a lot of what I just said about the slippery slope, talking with people, my urologist, Dr. Kim connected me up with guys my age who had a neobladder and guys my age who had an ileal conduit. So I was able to talk with them. I certainly talked with Doug. I think people would say I’m a very active person. In April of going through all those different turbots and the BCG, I ran and finished a 50-mile trail race. And so I exercise every day. It’s just part of who I am. So one of the guys I called up was in the ocean with his grandkids, with his ileal conduit, and he answered his cell phone. It was great.

And so I talked to a guy who did a lot of biking. If you have an ileal conduit you may or know about, I know you have a neobladder, but there’s something called a stealth belt that helps hold the ileal conduit. And I got in touch with a guy who had an ostomy bag, actually, but he ran marathons. So the community is so responsive when you reach out, it’s just a beautiful, wonderful thing. But a big factor for me was that I had had the panprotectomy. So I had really major surgery, which leaves scar tissue. The ileal conduit surgery is the most straightforward of the diversions, to my understanding. And so I did it. Would I do it again? I don’t know. I’m 10 months out, so your listeners need to know, I’m new at this still. We’re beating it. We’re moving on.

I’m already training for the next marathon. But it’s hard, Rick. It’s hard. It’s hard physically, it’s hard emotionally, it’s hard. It’s just hard. Yeah, I’ve got it and I’ve got it down. I’m second nature. The only time it really bothers me at all is when I think about it, I don’t like it. And I don’t know what would’ve been better, but I understand the decision because of, and Dr. Kim was very helpful. He said, “Well, look, we can go in with plans to do the neobladder, and if there’s a bunch of scar tissue, I’ll just do the conduit. We can just change it up.” But again, with counseling and talking with my wife and daughter and family and all, I just decided to go with it. And like I said, I’m very used to it. I listened to one of your podcasts yesterday about this woman that said she’s the happiest person in America with a ileal conduit. And I loved her attitude. My gosh, how beautiful is that? I’m not quite there, but I’m only 10 months out. Maybe I’ll get there.

Rick Bangs:

An aspirational goal.

Tim Stanley:

Yes.

Rick Bangs:

Okay. All right. So you had the radical cystectomy, but you had some challenges. So what happened and how did it get resolved?

Tim Stanley:

Yeah, so boy, it’s a hard surgery. I mean, they told me it was major surgery, but I don’t think I realized it. The surgery went as expected. And I spent five days with my wife and our son who lives in California. He came and spent the entire week here to take care of everything. And I was really weak but expected. But I started walking the hallways, as you can imagine, after what I’ve just shared. And the fourth day, there was a test that came back that was a little bit off, but Dr. Kim had them redo it and everything seemed fine. So they sent me home on the fifth day. That night I had the worst pain, and I’ve had kidney stones, which I thought were really bad.

Rick Bangs:

Yeah, they’re not good.

Tim Stanley:

And not being able to urinate is really difficult pain. But this was really crazy. But I thought, this is why they sent me home with all these drugs, which I don’t like. But I took and I just thought, well, this is just going to be part of the healing. But it was bad. But somehow I got myself through it and to sleep and actually woke up and didn’t have that type of pain or anything. But day two, that night when I was home, the pain was back and it was terrible. And I had a small fever, and my wife immediately just put me in the car and took me to urgent care. And long story short is I had to go back to the hospital and after, it might’ve been 24, 36 hours, somewhere in there, they did a lot of scans, they identified a very small leak where they had attached the ureter to the small intestine that would lead to the stoma and everything.

I’m forgetting some of the right words right there, but there was a little bit of a urine leak in that urine in the abdomen got loose, and it’s just created havoc, including pain and some other issues. So I spent another week in the hospital waiting for that to heal and for my body to start working again. And the reading I’ve done, it’s not that uncommon for people to have complications from this surgery, but the very few people get a leak. Dr. Kim said he had never had a patient with a leak before, but he told us and he said, “We’re just going to take our time. It will heal. Your body will heal.” And sure enough.

Rick Bangs:

So they didn’t have to open you up again anymore. I know it’s going to heal on its own, right.

Tim Stanley:

Yeah. He just-

Rick Bangs:

And I know-

Tim Stanley:

And of course to go back in would’ve been-

Rick Bangs:

Oh yeah, yeah, you don’t wanted that.

Tim Stanley:

Really difficult. No. No.

Rick Bangs:

Wow. That’s great. So you’ve already mentioned this, but you had this amazing support from your wife and your family and your friends and the Quaker community. So I think most people are struggling with understanding how they can help somebody with a cancer diagnosis and going through treatment. And I think it would be helpful to provide some examples of what support looks like and what that support meant to you.

Tim Stanley:

I think the hardest part of this whole process is my wife. I think it was harder for her than for me. I had the physical stuff and all the other, but the emotional part of is he going to get through this and then seeing me in the pain. So one thing I’ve thought about is, and I did this, I asked people to take care of Melanie. The doctors were going to take care of me one way or the other. We were going to figure it out and move forward. But it was like, I’ll be okay, but take care of Melanie, which meant spending time. To say being present may seem like a little thing, but I think it’s a mammoth, gigantic thing.

A text, a phone call, a card, or just being present for both, for Melanie and for me, just made a huge difference. And I mean, people showed up with food or different things, but again, just knowing that they cared and that they were thinking about us and our daughter who lives two hours away, rushed up here multiple times to be here, just to hold our hands and to help us think through because there’s so much emotional stuff going on. But she helped us process the information and think about it. She slightly removed, still a lot of emotions from her too, but slightly removed.

Respecting, and you asked me how can people help other people going through this? Respecting people’s privacy. Everybody’s different. Listen and let the patient and the caregiver… Just listen. Don’t ask. They’re going to tell you if they want to tell you. I’m going to let you know and Melanie’s going to let you know if we want to share some of the information because obviously, a lot of this stuff is like you’re talking about your body and how you urinate and you’ve got a bag that you’re walking around with now. A lot of it’s very personal and very private. So some of those things, and then it’s again, maybe too simplistic, but just love and the many different ways we can love, just loving us. I mean, we’ve been so supported, Rick, you are so right. We’ve been blessed.

Rick Bangs:

Yeah, it makes a huge difference.

Tim Stanley:

Yeah.

Rick Bangs:

Okay. Is there anything bladder cancer stopped you from doing? Because I’ve heard about trail runs, I heard about marathons. So has bladder cancer stopped you from doing anything?

Tim Stanley:

It’s not going to stop me, Rick. Darn it, still I’m 10 months out and I don’t have my endurance in stamina back, but Doug Cappiello reminds me, “Tim, give it time. You’ve got some high expectations there for your stamina and all of that.” So no, it’s not. No. And my wife and I just spent a great week with our daughter and our grandkids. I’m very involved with my wife and our Quaker community. Yeah, we’re moving on. It’s not going to stop anything.

Rick Bangs:

Good for you. Okay. Let’s talk a little bit more about BCAN. You’ve already mentioned a little bit about it, but when did you discover BCAN specifically and how has it helped you as a patient?

Tim Stanley:

I think in January was that first big shock when it turns out that I have cancer, and I believe it was in March when a friend, I never knew anyone with bladder cancer. But then when you have bladder cancer and you start telling your friends and family, you find out, oh yeah, people have bladder cancer. So a friend had a friend who had bladder cancer and shared about their chemo treatment and stuff like that, and also shared about BCAN. So in March, the website is really informative. It’s very easy to use, it’s reliable. There’s so much information, and I felt like the BCAN site made it easier to understand for me. Also, I loved the stories from different people who have had bladder cancer. And of course, I searched for any guy that was about my age that was active. I wanted to read their stories. And so that really helped. And then I could talk the entire show about Doug Cappiello, the Survivor to Survivor program. I can’t tell you the number of phone calls, emails. Doug went to the, what is it called, Rick? The BCAN Summit.

Rick Bangs:

The Patient Summit or the-

Tim Stanley:

Patient.

Rick Bangs:

Yeah, Patient Summit.

Tim Stanley:

Yeah. He went to that and that sounds like a conference basically with a number of the researchers and patients and all there. And he called us from the airport when he was leaving that conference to share some brand new information ’cause it was right then that I was on the slippery slope. I consider him a friend. Melanie and I want to go visit. He and his wife, Doug started a support group in California, online support group, and I’m his one East Coast member right now. So I mentioned, I mean, BCAN’s just been there constantly for me. And I mentioned I really want to give back. They’ve done so much for me. I wrote my story for them because those stories helped me, and I’ve got it on my calendar. I’m going to sign up for the Survivor to Survivor. They have a training program for survivors who other people can reach out to. So it’s just been a valuable resource that’s just, again, it’s just so helpful to talk to somebody else who’s been through it.

Rick Bangs:

Oh, it makes all the difference. If you were to talk to somebody who’d been diagnosed similar situation to yours, what would you want that person to know? Or somebody who’s been diagnosed with bladder cancer?

Tim Stanley:

Number one is, which hopefully I’ve said a couple of times, don’t go it alone. I mean, email me, call me. Don’t go this alone. There’s people out here. This community is amazing. If you reach out, they will help. Another thing is the early detection. In a lot of ways, I was lucky that they thought it was kidney stones and they went in and before it got into the muscle or anything, they discovered it. And then advocating for yourself. I mean, looking in the rearview mirror is easy, but looking back in August when they said there was a stone in my bladder, we waited until January to really go in. And I wish I had pushed to get that done a little bit sooner. Not that it would’ve made any difference, but advocating for yourself, it’s okay to get a second opinion. In fact, get a second opinion.

Rick Bangs:

Yeah. I’ve never talked to anybody who regretted getting a second opinion. So I always recommend getting a second opinion, ’cause it’s either going to validate or it’s going to raise some questions. And that’s not necessarily a bad thing.

Tim Stanley:

No, that’s a good thing. And again, the BCAN support, I would always want people to know about that. And there’s this, I don’t know if it’s called a forum or what, but BCAN’s got this thing called Inspire where bladder cancer folks can post questions, share stories. That’s really helpful too.

Rick Bangs:

Yeah, the web forum, which has got, I think it’s close to 60,000, six zero thousand members at this point. So yeah, tremendous resource. People are very helpful there. And they’re usually pretty accurate in what they tell you. There’s not a lot of crazy stuff going on out there, which is really important.

Tim Stanley:

Yeah, I think actually, I’ve read somewhere that somebody monitors it.

Rick Bangs:

Oh, there’s moderation. There is moderation. Yes, yes, yes. But it’s done carefully and with a light hand. So yeah, no, but that’s a tremendous resource for people to check out as well. Okay. Any final thoughts?

Tim Stanley:

I’ll just, do whatever you can to help other people going through this. I’ve said a million times, it helped me so much, and it always gave me hope and kept me positive. When I went through the scare with my pancreas, my wife came up with a slogan that said, “We are strong, we are positive, we’re together.” And I think that little mantra has helped carry us through quite a journey with different little issues with my health, despite the fact that I’m still going to run that marathon in November.

Rick Bangs:

Good for you. Good for you.

Tim Stanley:

Thank you, Rick.

Rick Bangs:

So Tim, I want to thank you for giving us an understanding of how to manage the slippery slope of bladder cancer and how people around us can help provide support. If you’d more information on bladder cancer, please visit the BCAN website, www.BCAN.org. In case people would like to get in touch with you, Tim, could you share an email or other information?

Tim Stanley:

Sure, Rick, I’d be happy to. My email is ridingfree, the number two @gmail.com, that’s ridingfree, R-I-D-I-N-G-F-R-E-E, the number two @gmail.com.

Rick Bangs:

Thanks for sharing that. Just a reminder, if you’d more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1888 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, Tim.

Tim Stanley:

Thank you.

Speaker 1:

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.