Transcript of Tom’s Story: He Fought Bladder Cancer and Pancreatic Cancer at the Same Time

May 10, 2022

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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. This podcast is sponsored by Seagen/Astellas, EMD Serono/Pfizer, Genentech and Merck. Today’s special episode is an interview that BCAN associate Joslyn Brown conducted with Tom who has faced both pancreatic cancer and bladder cancer. Tom talks about his two cancer journeys and offers an optimistic and uplifting perspective, particularly about his bouts with bladder cancer. Here’s the conversation.

Joslyn:

So I was reading what you sent us and you were diagnosed in 2015.

Thomas:

That was, yeah, that was a diagnosis, the end of 2015, but 2016 basically, in January 2016 is when it really all started. Although, I really had some bladder problems that predate that by maybe another four or five years, I was having all sorts of problems of frequency and just severe pains which were diagnosed by my doctor, not a urologist, but by the doctor as being prostate. After all, I am old. So automatically that’s what they thought and he treated it for some time with steroids and things. It just never really helped. I was just having, just absolutely crippling pains and went to Mayo and they looked and they did cystectomy[inaudible 00:02:24]. First time I had urologist and at that point they said, well, you have some growth, but it didn’t, they took a biopsy, said it’s not malignant. It’s just something odd pre-cancerous is what I think they called it.

Thomas:

And so I was going back to, I was living in Chicago at that point, went to Rochester every six months and they kept telling me the same thing. It just seems like precancerous and so on. So I quit. I just never went back again. And then we fast forward another eight or nine years. And that’s when I started the problems in 2015 and did see a urologist and he said, well, we don’t know exactly, we looked at, you have a history of stuff. Let’s take a look at maybe, I guess they did an x-ray. I don’t know if it was a, it was a CT scan to see if it had maybe gone into the bladder and to the kidneys. And he said, I got good news and bad news.

Thomas:

The good news it’s not in your kidneys, but you also have cancer in your pancreas. So I had sort of a cold thing going on there. And in 2016, I had both operations done, a TURBT for the bladder cancer and a modified Whipple for the pancreatic cancer, where they took out the distal part, the tail of the pancreas and the spleen and a few other things. Relative to that, oh, I also asked if it was the same cancer and they said, nope, two different cancers. So yeah, one here and one there, but they are radically different. Relative to the pancreas cancer, it’s now five years, six years later and no recurrence of that. And so I feel like maybe I’ve gone past that. I still go back every six months for CT scans and whatever they need to do, blood test, biopsies, so on.

Thomas:

But in 2016 I had what was a T1 tumor that was removed. They said it was very aggressive and I was to come back in 90 days for another look at which time they found that it had progressed. I had muscle-invasive. So again, I had a TURBT I was sent off to, this is when I was living in Chicago to the University of Chicago, to look at having a radical cystectomy. I asked about other options and came to understand that there was also a bladder preservation treatment plan that I could go through and that’s what I decided I would do. I would try the bladder preservation first. So, in the late summer of 2016, I started a radiation and chemo treatment plan. I think I had either 35 or 40, I forgotten, but it was seven or eight weeks of radiation and similar number of weeks of chemo and all seemed to be fine.

Thomas:

I was having then first 90 days and then six months cystectomies [inaudible 00:05:29] and about a year and a half after the chemo ended, after the radiation ended, I developed a flat cell type cancer, which they said maybe related, to just the excessive amount of radiation or just whatever. At that point there was another resection and I started the BCG treatments and I had the round of six and then three more rounds of three months, three months and six months later. And that was good for a period of time. Then the latter part of 2019, there was another growth that was non-malignant that was taken out. And another one just recently in, just before Christmas, another thing that was biopsied and found out to be not malignant. So overall, I think I’ve had about six resections and then the radiation and the chemo. So, I’ve gone through a lot of different things. I volunteered to be part of the survivor-to-survivor program and that has been great for me and I think the people with whom I’ve talked to, I’ve developed a lot of bladder buddies.

Thomas:

And some of them, we’re still in contact, a year later, they send me a message or they’ll call or something. And so we’ve talked, that’s sort of been my up-to-date, quick history of where I’ve been and what I’ve done and stuff like that. It’s been quite a journey.

Joslyn:

A journey. Yes, I know. So I’m going to ask you some more details just so my understanding. You were diagnosed with bladder cancer and the pancreatic cancer at the same time?

Thomas:

Yes.

Joslyn:

Okay. So how was it hearing that? Because that’s a lot.

Thomas:

From some of the summits I’ve been at and people I’ve talked to on the phone through BCAN, there are a lot of people who say you have cancer are the three words and then they hear nothing else. I wasn’t quite that bad, but it was a bit of a shock for me to hear those words. I’ve had a lot of cancer in my family; mother, brothers both died from cancer and others who have grandfather and so on. So I’ve been around that. I’ve been a caretaker for someone with colon cancer for some period of time. And my son just recently was diagnosed with colon cancer. So as far as hearing the words, I don’t think I was quite as much taken back by the sounds of the words as maybe somebody who had, it just came out of the blue.

Thomas:

Not that I was expecting ever to have cancer, but the fact that I had it didn’t come as a, it came as a surprise, but not necessarily an overwhelming shock. And so I was probably ready to ask questions, what do we do next? How do I approach it? What’s the next thing? Where can I learn more information? And I’ve heard over the last years from BCAN, there just wasn’t a lot of information 10 years ago, but I’m only going back five and there still wasn’t a great deal of information at that point available. And it was after I started the BCG, so about three years ago that I came across BCAN and it was, I changed, a life changer for me and as much as not only fitting to meet other folks and volunteering, but just the wealth of information that’s out there.

Thomas:

Now my information before was Googling things, I’d go to the National Cancer Society and they would talk about cancer for all sorts of things and the BCAN one is just so bladder specific and you can get the type of information that you need that’s focused specifically to what it is, not just a general thing on chemo, but bladder specific chemotherapy. Although that seems to be a fairly recent thing, the Trimodal therapy it’s increasing in the number of people who are aware of it and so on. Some of the people I’ve talked to through the survivor to survivor programs are just now becoming aware of that. My urologist was incredible. He seemed to be aware of it. The other thing is he had a golf buddy who was a medical oncologist. So immediately he said, if you want bladder preservation and he said, I wouldn’t recommend that because the gold standard to have bladder removal, let me put you in touch with this doctor.

Thomas:

And he explained everything to me and what I was going to go through. And then we met with the radiation oncologist and again, I developed some friendships there, the radiation oncologist, I volunteered at the cancer services department and worked on some studies and did a couple of years of volunteering there before I moved here to Arizona, that’s been three years. Yeah, it was a surprise and it was a shock, but I somehow, I was ready to hear it. And I just happened to have three great doctors who were just willing to talk with me and explain things. And I did a lot of research on my own. So I would come back as I think there’s a commercial for something that says our best customers are informed customers or something, well, that’s the same thing for this. Our best approach as bladder cancer patients is to be informed so that we know what we’re talking about and what they’re talking about and it helps to make informed decisions that way.

Thomas:

And I think the one other thing is my wife has just been just absolutely incredible. We’ve been married now 50 years, if it wasn’t for her, I’m not sure how well I would’ve gotten through the last five years of treatments. It is interesting. I’m a very, typically a very stoic person, but talking with you just now, it really has touched me. I feel sort of teary, just remembering that, she’s been with me at every single stage at the time this was pre-COVID. She sat with me as I went through the chemo, they were about six hours or so per chemo treatment. It was a long, a long time. I think they also gave me a cocktail that was good for pancreatic cancer at the same time. So not only that I had cisplatin, but I had Taxol which is yes, good for bladder cancer, but it’s also a treatment that’s used for pancreatic cancer.

Thomas:

And she understands my humor. For me, making light of things or making a joke on something helps me get through it. I remember when I went in for the first term and the prep nurse said my wife was in the room with me. Well, we’re going to be taking him down now, so you can say your goodbyes. And I looked at her and said, goodbyes, that doesn’t seem to be the right terminology. Don’t you, see you later? And she said, oh, of course, that’s what I mean. And my wife said, he’s just making a joke. And so it was, it’s been easy because I’ve had, I’ve obviously had good doctors who will talk to me and listen to me. And I’ve had a wife who’s just been my post to get through these things over, over and over the things that have to be done. She has her own problems with diabetes and things, but has just been incredible.

Joslyn:

It’s important to have a support system in and it makes a very big difference when you have someone there with you every step of the way.

Thomas:

Yep.

Joslyn:

And I have to say you are pretty much doing my job for me because you’re answering my questions without me having to ask. So I love it.

Thomas:

When I was in college, I worked at radio station and remember my first interview was with Buddy Rich, he is a jazz drummer and I was very nervous and he walked in and I said, I’m nervous. And he says, not to worry. He says, I’ve done a lot of these interviews. You just introduce me, tell them that I’ve been in Chicago for some dates and I’ll do the rest. And so he just took off and talked and talked and talked and talked. And I had questions that I would go in. So maybe I’m just being overly talking too much, but that’s-

Joslyn:

No, you’re not. You’re doing great.

Thomas:

Just as a thing that you reminded me of taking the journey alone. And I think so many people get in that and they get in a big room and the echo of the words, you have cancer just echo through the room and they hear nothing else and they’re alone. And I think my attitude is you need to bring people into the room with you. You need to bring in your doctors and your technicians and you need to bring in your family. And they have to be part of that room that cuts down on the echo. So you no longer hear that word, you have cancer echoing. You hear, here’s the road ahead, here’s what we’re going to do next. Here’s the pathway. And to have people walk on the path with you is so much nicer, than walking along and so much more comforting and so much easier to do. I think for Jan and I, it’s certainly made us closer in that time period, just I’m 76.

Thomas:

So you get to a point where you realize, especially when you get things from the insurance company that says your life expectancy is 93 and you start to count up the days and you go, well, I only have, X number of years. So you realize that there is an inevitability at 25, 35, 45. I expected to live forever and certainly until I was a hundred. The fact that there is a finite amount to your life is one of the things that you face when you hear the things you have cancer. But I think in this case, I feel stronger for and I certainly feel stronger in our relationship with Jan.

Joslyn:

I love it.

Thomas:

And I’ll be quiet now.

Joslyn:

No, you’re doing great. I promise. So I think the questions I want to ask that we probably didn’t cover, but promise you, everything is like amazing. How did you find BCAN?

Thomas:

By accident? It was just Google searches and so on. And I found BCAN and I go, well, this is exactly what I need. Here is a resource that deals only with bladder cancer and a lot of other amounts of information that were available, the webinars, the experts, the things that you could do, whatever they’re called, not postings, but where you can go and get, get somebody else’s recording and see that, and the thing that you are doing, I forgot the name of the-

Joslyn:

Interviewing?

Thomas:

No, it’s got a special name where you said, this is my journey type thing that’s posted on there and it comes out in the newsletters. Those are the kinds of things that just make you realize you’re not alone, that there’re others out there, that the people that I’ve met who’s had radical cystectomies have changed my view on that. I was absolutely against that. I was never going to do that. And I meet people who have gone through it and have moved on to the other side and have wonderful full lives. And I go, well, if that’s the next step on me, I’m not scared of it anymore. I will move forward. And it’s because of BCAN that I learnt these things. So it’s been a great association for me. And I’m glad that at least through the survivor-to-survivor thing that I can give back some and walk.

Joslyn:

And walk. Yes, you should walk.

Thomas:

Virtually, but I’ll walk anyway.

Joslyn:

And I also work with the Walk team, so I have my hands on everything. So what made you want to become a part of survivor-to-survivor?

Thomas:

That’s an old cliche about giving back. I’ve been through a number of experiences and I feel stronger for it. And I thought if I could convey to others, that sort of strength that there’s a roadway that you’re going to walk down. It’s not the one you chose. Maybe initially you had some other thoughts in mind, but this is the one you’re going to walk on. And if I can help make it a little easier, I’ve been down the path. I know which way to go and I know where there are some potholes that you might tumble in and where the weeds are on the side. So if I can help somebody else on this same path to get down it, I feel like I want to be a guide to at least help however I can, point them to the next bridge and go on from there.

Joslyn:

I love it. And I would typically ask the question, did you have any side effects with the radiation, the BCG treatments and the chemo? I do want to ask that question, but you have so many good positive things, I don’t want to muddle it.

Thomas:

My BCG was virtually nothing. I went through it with, no, I guess once you get over the embarrassment, the idea that you’re there and your sort of exposed, you give up your modesty, everything else is easy after that, for BCG, for me. I’ve had some, a little bit of negatives from the chemo; neuropathy, hair loss, which the medical oncologist says it’ll grow back but then again, you’re getting older, maybe it won’t. So, it is what it is and I’ve lost a great deal of it on the top. So I think the radiation caused other problems that I wasn’t fully aware of. Interesting, I understood the radiation. My background is in physics and engineering. And so because of that and because I was a patient, I was able to get to meet the nuclear oncologist technician who set up the radiation programs. And I went in the back room and I saw all the radiation equipment and so on, which is something I had dealt with anyway in particle physics.

Thomas:

So I understood that part and I understood what they were doing and how careful they were at how they were going to come in at different angles so they didn’t hit intestines and muscles and other parts, prostate and so on as they were coming in. So I understood that. I think I’ve had some negatives from the radiation. I’ve had obviously that in the number of resections, a great deal of scarring and problems I’ve had recently, some incontinence problems. And I will attribute some of that to the resections but some of that to the radiation. If asked the question, would you do it again? The answer? Yes. Yeah. Categorically, I would do the same thing again, knowing what I’m experiencing now. Yeah, absolutely. It was the decision I made. I don’t have any regrets on that decision at all, but I do feel like I’m having some negatives as a reaction from the radiation.

Thomas:

I’ve worked with the urologist to have some chemicals of different sorts, to try to help that. And they’ve been actually virtually no help at all for the incontinence and just recently, I started with what’s called a pelvic floor physical therapist and they’re supposed to help you develop relaxations and being able to develop that. So, I’m optimistic that, that’s going to help. I’ve just recently started and that was my urologist who had suggested that as an option. And so that’s where I am right now, but all in all, if it wasn’t for having to go more often than I’d like to, my life is great. I just, I have no complaints. I just feel blessed and very comfortable.

Joslyn:

I love it. And I think this will be my last question for you. Is there any advice that you would give, I know you have been talking to survivors all the time. Is there any advice you would give to someone who is really diagnosed?

Thomas:

I think I said that before, but don’t make the journey alone. There are medical people that you need to bring in into your room with you, into your tent, into your life. They will be there. And if you are an informed consumer, it will make that interaction so much easier for both of you. You’ll have a little understanding of what they’re doing and they’ll be able to explain things more in detail. So be informed about your cancer, about where it’s going. Don’t think that it, oh, well, the doctors will just take care of it, I don’t have to worry about anything. It’s not that you want to worry about it, but you do want to be involved in it. And I think family and friends, you need to take their hands and bring them along on the path with you also.

Thomas:

I think those are the two things I would suggest, bring more people into, I think I said about a big echoing room, bring more people in the room with you. It’ll cut the echo and it’ll just make your life that much better. You can’t deal with this alone and you shouldn’t deal with it alone. It’s the kind of thing you need to do. Was it, the Clintons that talked about villages, the same is true with bladder cancer, with any cancer, it takes a village of medical people and it takes a village of family to get you through it all. That’s where I feel I am right now.

Rick Bangs:

That’s all the time we have for today’s episode. An interview with bladder and pancreatic cancer, survivor Tom. We are grateful to Tom for sharing his perspectives as well as giving back to other bladder cancer patients via BCAN’s survivor-to-survivor program. Stay tuned for another interesting Bladder Cancer Matters podcast coming soon.

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 bcan.org.