Transcript of Howard L’s Journey with Bladder Cancer and Alcoholism

May 8, 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, advance 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, Howard L., a recovering alcoholic who’s been sober for over 36 years thanks to Alcoholics Anonymous. He is also a bladder cancer survivor. Respecting AA’s tradition of an anonymity, we’re using the initial of Howard’s last name, though many people will recognize his voice as the host of AA Recovery Interviews, a weekly podcast where AA members from around the world share their personal stories of experience, strength, and hope. Howard’s use and eventual abuse of alcohol started at age 18. By age 30, he was a full-blown alcoholic losing jobs, money and friendships along the way. As his marriage of only two years was rapidly deteriorating, Howard had had enough, he joined Alcoholics Anonymous in 1988, and has been sober ever since.

By embracing the AA program, working the 12 steps and being of service to others, Howard describes his life as spiritually rich and fulfilling. Last year, however, he was diagnosed with non-muscle invasive bladder cancer and underwent a TORBT procedure. As fear and uncertainty set in, Howard’s AA community in Houston surrounded him with the same unconditional love and support he has provided to fellow AA members in their hours of need. In many ways, Howard’s involvement in AA to arrest his disease of alcoholism became the very thing that has helped him face bladder cancer. A retired health benefits consultant, married now 38 years with three adult children, Howard still attends AA meetings every day. In addition to his podcast, he has produced two popular audiobooks, a word-for-word reading of the first edition of Alcoholics Anonymous, and Lost Stories of the Big Book.

Howard, thanks for joining our podcast.

Howard L.:

Well, you’re welcome, Rick. It’s a pleasure and an honor for me to be here.

Rick Bangs:

Well, we’re thrilled to have you. I want to start with your bladder cancer diagnosis. So how and when did that diagnosis happen and what were your symptoms?

Howard L.:

Well, it began back in late March of 2023, and I had a symptom that I guess which is pretty common in the early stages, and that was blood in my urine. And I went and saw my primary care physician about a week after just to make sure it wasn’t a fluke, and he ordered a CAT scan and urinalysis and the original CAT scan that came back, all this was going on during the month of April, the CAT scan that came back showed no abnormalities in my bladder. And I kept thinking it might be something else. I’ve worked out a lot, so I thought maybe it was some kind of injury to my bladder or an infection. I was hoping against all that it wasn’t cancer. And then I saw a urologist to review the CAT scan, saw nothing untoward there, asked me to schedule a cystoscopy, which I had done right at the end of May of 2023.

And during that time, what was interesting to me was the blood in the urine was only one day and then nothing for a couple weeks and again, and then nothing for a couple of weeks and then again. I was confused by not having blood every day so I thought it must’ve been something else. And anyway, by the end of May, I had my cystoscopy and it revealed a two centimeter tumor and my urologist scheduled surgery to remove it a couple of weeks later. And so June 9th of last year I had the trans urethral resection of the bladder tumor procedure done. Then I received the diagnosis about two weeks after that into June, and the diagnosis was a high grade non-muscle invasive tumor. And there were some issues with the way the pathology had been done that caused some concern at that time, which had to do with the urologist providing the specimen to the pathologist and part of the specimen was missing, I guess the tumor was in the specimen bag, but the healthy tissue around it that gets sent at the same time somehow got lost.

And so when I received the diagnosis of the bladder cancer, the pathology was based, I believe, on an incomplete specimen. And so that kind of bothered me, but my urologist assured me that in visually looking at the site that he had removed the tumor from that he felt like there were no additional tumor cells in the bladder at that point. And he asked me to come back in about three months to see if there was additional issues with that. At this point, an oncologist was not brought on board in my case, I ended up going to one of the larger medical center hospitals here in Houston for what I consider to be a second opinion to that of my urologists. Unfortunately, they looked at the same pathology and they concurred and said it was a high-grade tumor. And I brought up the fact that it was an incomplete specimen, but for whatever reason, that didn’t seem to make a big impact on them, and it really bothered me. And that’s when I decided to take the case to MD Anderson, and it turns out that it was a low-grade and not a high-grade tumor.

Rick Bangs:

Which is unusual because most people don’t get restaged down to a low-grade, and the two are treated very differently or follow-up plan would be different. So I think for our listeners, this reinforces the importance of potentially getting a second opinion on pathology, which I didn’t know about until I went to my first BCAN meeting. So talk a little bit about what happened during this recalibration, because that was really good news that you were not high-grade, you were low-grade, so how did it happen and what advice would you share as a result?

Howard L.:

Well, I’ll say this, yes, the Bladder Cancer Advocacy Network turned out to be a great resource to me during this time because when I went online to find more information about what was going on, I got to BCAN’s website and I was trying to understand the differences between high-grade and low-grade. At first, I thought high-grade, but without it being muscle invasive, that I was in pretty good shape. But what the second opinion at the other medical center before MD Anderson came up with was to treat me as a high-grade case and provide intervescule gemcitabine and I think cisplatin was the other chemo directly into my bladder for a course of six weeks. And of course, that’s when they were still considering it a high-grade cancer.

And so when I went to MD Anderson, they took another look at the pathology and I was incredulous, I said, “How could two pathologists have gotten such different results?” And they indicated to me something which became pretty clear from the interviews you’ve done with Dr. Kamat from MD Anderson, who incidentally was the physician who unbeknownst to me was assigned to the case whenever it was I first got in touch with MD Anderson and I had a hard time getting in there because I had already had care from another physician group and another oncologist. But by the time I got in, it was Dr. Kamat who was the doctor who actually saw me. So it turned out to be quite providential. I mentioned to him when I first saw him that I’d heard his interview with you and I felt greatly comforted by the fact that in that interview he did draw the distinction between high-grade and low-grade.

So what I would say is to anybody who gets a diagnosis, whether it’s high-grade or low-grade or some other, muscle-invasive versus non-muscle-invasive, I would just say make sure that whatever data has been provided to the doctors, be it a specimen or other information that can go towards an accurate diagnosis should be provided. And in this case, I think with the missing piece of the specimen, that was problematic from the very start. And I’m so grateful to Dr. Kamat and the whole staff there at MD Anderson that they found this problem and rectified it. And sure enough, last week, Rick, I had my six-month follow-up and everything came back clean and clear and perfect, and I’ll go back in another nine to 12 months for the next follow-up.

Rick Bangs:

That’s awesome. That’s really terrific. So you got wonderful care at a major cancer center. So beyond the diagnostic challenges, which were not insignificant, what differences did you note between the major cancer center and your other providers that you had along the way?

Howard L.:

Well, like most people, I went with the suggestion of my primary care doctor as to who to see as the urologist, and going to see the urologist not knowing what to expect there, what I realized was that they were not as well-connected with MD Anderson as I otherwise thought they were, which is why I went to that other medical facility. And that’s a world-class facility as well, and MD Anderson is one of the major systems here in the Houston area.

But I think what ended up happening for me is some of the people who I conferred with about my situation, I’m talking about friends who’ve had bladder cancer and services done, told me that I’m living in the city with the best bladder cancer network of physicians and resources in the world, why wouldn’t I go there for a second or third opinion? So I took advice I probably should have known intuitively, but in the midst of it all, it took suggestions and people encouraging me to actually go and get that, what amounted to a second or third opinion depending on how you look at the first opinion. But I think there was a major difference, although I was quite surprised that this other major system would go on the original pathology and not do anything beyond that.

Rick Bangs:

So you’ve been a recovering alcoholic now for over 35 years. How did you originally find AA and what has AA done for you?

Howard L.:

Well, as you mentioned in your opening, and I appreciate you saying what you said about my journey, I came from a pretty dysfunctional family and had a lot of issues regarding mental health and other things that I was trying to deal with as a child and an adolescent. So by the time I was able to start drinking to deal with those issues and gain some comfort in my everyday life, things got a little bit out of control and actually a lot out of control. And while I was a functional alcoholic for many years, being able to hold down a job and relationships and other things, over time, what happened was that continuing alcohol use deteriorated my mental state and got to the point at which I was losing jobs and I was making poor decisions, and I was in a marriage that was in very bad shape just after a year and a half or two years.

And so it was at that point that I needed help. And I didn’t know much about AA, but I had heard that people had stopped drinking in it and had turned their lives around so I decided I would give it a try, not really believing that it was going to work. But here we are, 36 plus years later, and it did, it made all the differences. I could not have stopped without AA. What I know now is that I needed the program of AA to put together anything that looks like content and sobriety.

Rick Bangs:

Wow. So what are some things that might surprise our listeners about alcoholism and alcoholics?

Howard L.:

Well, first of all I’d say is that the number of deaths per year from alcohol related deaths, and it’s probably understated for a lot of different reasons, close to 200,000 deaths in the last study that was done, 2021, and that was a 30% increase from the previous study, previous numbers in 2016. So alcoholism, especially since the pandemic and people staying at home, has actually increased significantly, and a couple hundred thousand deaths every year are attributed to alcoholism. But that doesn’t begin to account for the number of causes of death which aren’t directly correlated with alcoholism, and that is things like drunk driving or other internal organ issues and that sort of thing.

What I think might surprise people about it is that alcoholism is a disease, and just like any other disease, it can’t be looked at through a moral lens or a good/bad behavior lens, it has to be looked at as a disease for what it is. And I think once people take a look at the people they know and love as being people who need some help for that disease, they’re going to be not able to be of much help. So I would just say anybody who has an alcoholic in their life, or they may think they’re one themselves, really needs to take a hard look at do they want to stop? And if they do, what are their choices and opportunities? And then if AA is appropriate, well, they can make the decision to participate in AA.

But at the end of the day, I think especially for people who might get diagnosed with a dreaded disease and give up or be alcohol to quell the feelings about it, that it’s important for people to take a look at their own alcohol consumption and decide if it’s gotten out of control. Can they predict their behavior after they take that next drink? What is their life looking like in total as a result?

Rick Bangs:

So you have this strong network at AA and one of your AA connections had some advice for you relative to your bladder cancer journey. So tell us, what was that advice and how did you apply it?

Howard L.:

Well, it’s interesting, Rick, I know that you had your neoblader put in 2006. This friend of mine had a neoblader put in back at MD Anderson in I think it was 2014, and he is alive and well and thriving and happy in his retirement now and I think he may even still be working part-time. But actually, I didn’t realize he even had had bladder cancer because I hadn’t seen him for a number of years and I was in a meeting, an AA meeting right after I got diagnosed with the bladder cancer, and a friend of his heard me share in that meeting about the diagnosis that I had received. And then that man came up to me afterwards and talked to me a little bit about it. And then I got a phone call a few days later from this mutual friend of ours who said, “Ken heard you share in that meeting. And I myself went through the bladder cancer.”

Now, at that point, I didn’t know that there was going to be a problem with the misdiagnosis, but he himself had also had a similar situation, Rick, where he went to one medical center in town and one suggested one course of action that turned out to not be correct for his situation, and he ended up going to MD Anderson as well. So it just worked out that way that a man who I knew from the program of AA for well over 20 years, I had no idea that he had had bladder cancer. But since it happened, several other people who’ve had bladder cancer and other types of cancer have offered their support, and it’s been most valuable during this period in my life.

Rick Bangs:

Wonderful. So you have years of experience with AA, and I think the cornerstones of Alcoholics Anonymous have some pretty strong parallels and lessons learned for bladder cancer survivors and their support navigating that journey. So can you talk about the AA cornerstones and how they might relate to bladder cancer?

Howard L.:

Sure, Rick. The preamble that gets read in the beginning of every AA meeting is, “AA is a fellowship of men and women who share their experience, strength, and hope with each other that they may solve their common problem and help others to recover from alcoholism. There are no dues or fees for AA membership. The only requirement for membership is a desire to stop drinking. AA is not allied with any sect, denomination, politics, organization, or institution, does not wish to engage in any controversy, neither endorses nor opposes any causes. Our primary purpose is to stay sober and help other alcoholics to achieve sobriety.”

That’s a really broad swath of things that all go into the AA program. And we stay away from controversy, we stay away from judgment, we stay away from everything except the disease that we all share if we’re sitting in a room of Alcoholics Anonymous, and through sharing with each other through the social interactions, which are really the basis of AA, people helping people by sharing their experience, not telling them what to do, but telling them what they did and let them come to their own ideas and their own conclusions of how best to face their own alcoholism. AA is a 12 step program, which means that there are 12 steps that are indicated as suggestions for attaining and maintaining sobriety, as well as spiritual connectedness and being of service to not only the AA community, but people in general.

And it encourages them to offer whatever help and support they can whenever possible with the idea that sooner or later they’re going to be the person who is providing that same kind of experience, strength, and hope to others. So we pass it on by giving it away to others. And what’s commonly said, and I believe it with all my heart, is you can’t give away what you don’t have. And so it behooves people in the program to share the success and the failures that they’ve experienced with alcoholism as a way to help other people.

And so the way that relates to bladder cancer is certainly, I think it’s important for people to be talking to other people. And some of the things that BCAN has going for it with the interaction between not only the constituents with bladder cancer, but the medical community and other research communities, is everybody gathers for the common purpose of discussing a common disease and leaves other issues at the door. And I think that that is so important. So I see some real similarities between the sorts of things that BCAN is doing and the sorts of things that AA has always done since it began back in 1935.

Rick Bangs:

Yeah, and that would include the Survivor to Survivor program where they match people and the online web forum and the new 800 number, all those things kind of parallel that whole social interaction and having somebody who’s been through the experience help somebody else.

Howard L.:

Yeah, it sure does.

Rick Bangs:

Really helpful. So what advice would you have for alcoholics who might or might not be recovering relative to navigating a cancer like bladder cancer? Because it is an incredibly challenging journey.

Howard L.:

Well, what I would say, and I’m not looking too deeply into the research, there doesn’t seem to be any exact connection between alcoholism and bladder cancer, much like there might be between smoking and bladder cancer. But most of the time people who I’ve known who’ve been alcoholics with medical problems, it usually involves their internal organs, mostly the liver. But what I would say is that if you get diagnosed with a disease and then you put alcohol on top of it, my question is, is it helping any?

And frankly, I don’t think it is. In fact, I think somebody who might get diagnosed who doesn’t currently have a problem with alcohol, if they get diagnosed with cancer of any kind, it may influence the way that they’re thinking and feeling such that they want to change that. And certainly one of the easiest and closest things to change it with is alcohol and/or drugs. So what I would say is somebody who has been diagnosed with bladder cancer needs to look to the resources that are available and leave alcohol and any kind of mind-altering substances off to the side.

Now, that presumes that some people do have alcoholism and drug addiction that are diseases that need to be dealt with, many, many, and most people don’t. So I don’t want to sit here and say somebody who’s not an alcoholic or have alcoholic tendencies should not have a wine with dinner if they’ve got bladder cancer, but I don’t see any direct connection between the two, beyond the point of being able to be there and fully aware of what’s going on, one of the ways to do that is while you’re in sobriety as opposed to addled by drug addiction or alcoholism.

So I would say there may be people who start drinking out of the stress of a particular diagnosis, but one of the things I would suggest to anybody who realizes that they may be having a problem with alcohol is to seek help through AA as a way to not only get support for their alcoholism, but also the same kind of loving support and non-judgmentalism for their cancer.

Rick Bangs:

Right. I think that makes perfect sense, and it’s a very stressful experience. So let’s talk about BCAN, we talked a little bit about it, and maybe you can provide a little more detail. So you discovered BCAN, sounds like, relatively early, and you mentioned that you had heard one of Dr. Kamat’s podcast. He’s done a couple with us. He was actually the first podcast guest.

Howard L.:

Yeah, I remember I saw that.

Rick Bangs:

Yeah. So how has BCAN helped you as a patient?

Howard L.:

Oh, it is been terrific, and I would highly recommend it to anybody, not only patients, but families of patients and loved ones of patients and current or future caregivers with the idea that the resources that BCAN provides are really top-notch. The very first time I went to the website, I found it to be really well-organized, I found the resources that were available to be highly attainable, easy to understand. Your interview with Dr. Kamat was a great inaugural episode because he speaks so plainly and with such insight that it was a very easy podcast to listen to. So I would direct anybody who likes the BCAN website and podcast to go back and listen to that first interview if you haven’t already heard it, it’s really dynamite.

The range of information that you provide is, I think, very attainable and easy to navigate. You go to lung or any kind of other cancer website, you’re almost overwhelmed by the information both in its organization and its volume. And what I would just say is that BCAN has everything so well organized on the website from advocacy to research to patient interaction and the interaction of the constituents, that it’s really a very, very helpful resource and I would highly suggest to those that are trying to understand and navigate bladder cancer from any perspective that they hook up with BCAN and contribute money as well, I did as well. And I think now that I’m part of the disease that BCAN is involved with, I’m a survivor, cancer survivor of bladder cancer, that people need to support your efforts not only by visiting the website, but also by contributing to its future success.

Rick Bangs:

Yeah, they have some amazing resources and they do a fantastic job.

Howard L.:

Yes.

Rick Bangs:

All right, so you host a podcast and it’s called AA Recovery Interviews. I want to hear a little bit about that. How did that come about and what kinds of topics do you cover in your podcast?

Howard L.:

Well, I appreciate you asking that question, Rick, because for those people who’ve seen AA portrayed in movies and on TV, most of what you see portrayed is somebody going up to the front of the room and telling their stories. That is a component of the AA program, though many, many meetings are discussion meetings where a topic is brought up and people share for three to five minutes their own experience with that. There are other meetings that dive deep into The Big Book of Alcoholics Anonymous and others that deal with working of the 12 steps.

What I found was that when people were telling their stories as in a speaker meeting where one individual gets up for a period of 50 minutes to an hour and tells their AA story, basically what they’re sharing is what it was like before they got sober, what happened, the getting sober process, and then what it’s been like since. And what I realized was that a lot of people just naturally tend to spend most of their time talking about what it was like and what happened, because those are usually the juiciest parts of the story. People who are sitting there, even if they haven’t been sober very long, they can identify with all the crazy behavior on all the different difficulties that befell individuals. And then getting into the program may have been somewhat of a colorful experience as well. And then they leave a very brief amount of time at the end, maybe even just a few minutes to say, “And then I got sober 15 years ago, and everything’s been great since.” What I always wanted to know was what’s happened within that period since you got sober that the program has helped you?

And so I decided to focus on that in a podcast that does maintain all of the strict anonymity requirements, and the General Service Office of AA has its own guidelines for protecting internet online identity so that people could talk anonymously, but from the heart. And so what I do is I just basically invite people on, I’ve done 145 interviews so far, and each interview is about an hour long, and it’s all these different stories that men and women from around the world have the opportunity to tell.

And when people listen to these, whether they’re looking for help themselves or whether they’re avid members or occasional members of AA, or whether they’re just people wanting to know a little bit more about the getting sober process and what that might look like, the podcast is an easy way for them to listen to other people’s stories and find similarities in their own lives and make a determination on whether or not that person’s experience might be the sort of thing that they could implement to get sober and not only save their lives, but influence the people around them, save marriages, jobs, and at the end of it all, obtain what I would consider to be a rich and meaningful and spiritually guided life.

Rick Bangs:

It’s a great service, so thank you for doing that. Any final thoughts?

Howard L.:

What I would say would be this, that when I first got the cancer diagnosis, I was in a state of shock, as I’m sure many people, it was comforting for me to be able to go online and immediately find BCAN, your website and the podcast kind of popped to the top of the search engines, which I think is kind of cool.

But I would just say that the most important aspect of having a disease, knowing what it’s like to have alcoholism and drug addiction as co-occurring diseases in my life for so many years, is that getting with other people who understand the disease because they’ve had it and they’ve dealt with it. And some of the ways that they’ve dealt with it may be different than other people have for dealing with the same problems, to get with other people who can be of support. The one thing the AA does offer is the unconditional love and support of other people who are sharing the same disease and the same kind of challenges that come from facing it.

And I would say as a bladder cancer survivor, I have greatly benefited from talking to other people with bladder cancer, friends of mine that I’ve since realized had bladder cancers, are survivors of it, just being able to share with them in a way that provides information and support and love is so important. And I would say the worst thing that anybody could do with bladder cancer is to isolate and to not allow others into their lives.

I think it’s very natural, I really pulled back whenever it was that I found out that I had bladder cancer. Even though I’ve been sober a very long time, I still felt a little bit isolated like I was the only person in the world who ever had it. It took going to meetings and talking to other people with bladder cancer for me to realize I’m not alone, and that feeling of not being alone I think is so important in dealing with bladder cancer, alcoholism, drug addiction, or any other kind of fatal disease. And alcoholism is a fatal disease, as is bladder cancer if they’re left untreated and not monitored. So that would be my closing argument for getting involved in a program that can address all of your issues with the experience, strength, and hope of others.

Rick Bangs:

Yeah, you’re so right. Finding people like me is fundamental in life. So Howard, I want to thank you for giving us an understanding of the importance of second opinions and the tremendous support that’s available through Alcoholics Anonymous. If you would like more information on bladder cancer, please visit the BCAN website, www.bcan.org. In case people would like to get in touch with you, could you share your email, a Twitter handle, perhaps a website that you’d like people to have? And I know they’re going to be interested in finding your podcast, so how would they do that?

Howard L.:

Sure. The URL for the website where you can listen to all of the interviews in the AA Recovery Interviews podcast is aarecoveryinterviews.com or recoveryinterviews.com, I have both of those URLs. If they want to get in touch with me directly, email is the best way to do it, and that is howard@aarecoveryinterviews.com. And because of the anonymity factors involved, I typically don’t post my pictures and suggest to people that if they’re sharing anything online with regard to their own alcoholism, that they take an effort to keep their visual identity separate, but certainly give their first and last name and initial. But I’d be certainly happy to correspond with and talk directly with people who reach out to me using that email.

Rick Bangs:

That’s very generous. Thank you. 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, Howard.

Howard L.:

You’re welcome there, Rick. Keep up the good work.

Rick Bangs:

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, advance 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.