Man Beats Cancer after Small Intestine is Reconstructed into Bladder

Podcast Transcript

Kyle:  Hey everybody welcome to The Comeback I'm your host Kyle Michael Miller. During this episode we're talking with Al Sidoti who had his bladder reconstructed after battling cancer. Al's wife Dawn will also join us, as well as his Cleveland Clinic surgeon George Pascal Haber. But first here's Al in his own words.

Al:  My name is Al Sidoti. I'm 42 years old. I'm a plumber from Strongsville, Ohio. In 2011 I was diagnosed with bladder cancer. I went through treatment several times but it came back several times. I had my bladder, prostate, some lymph nodes removed from the area and my bladder was completely rebuilt. Just before surgery I’d gotten remarried and now we have a 4-year-old little girl named Scarlett. I’ve been cancer free for five years. I am grateful for my life, my health, my wife, and my family.

Kyle: Al, Dawn, Dr. Haber, thank you so much for joining us today.

Dr. Haber: Thank you.

Dawn: Thank you.

Al: Thanks for having us.

Kyle: So Al, I know before coming to Cleveland Clinic you had been going through chemotherapy treatments but you had hit a brick wall. The cancer kept coming back. What was that experience like and how did you come to Cleveland Clinic?

Al: After a bunch of treatments, the treatments weren't working. I had a few surgeries and they were taking out the cancer as much as they could. We would try the treatments but then after a while everything just started growing back. So after a point, the doctor that I was seeing said ‘Listen, there's only so much I can do’. He goes, ‘Here's the name of a doctor. You go to the Cleveland Clinic and you go talk to him.’ Then a couple weeks later we had a meeting with Dr. Haber and he told me what my choices were. It was either try some more of the treatments to see how that was going to go, and he was willing to try that, but he said that if it doesn't work, or if it decides to move to some other organs it’s bad news. He told me what my options were at that time. He said your best bet is probably to take everything out. The prostate, the bladder, all the lymph nodes and then reconstruct it. So that's pretty much the beginning stage of when we first got there and talking to him.

Kyle: And you weren't just going through a medical dilemma, you had just gotten married too so you had a lot going on in your life. 

Al: Yeah.

Kyle: And Dawn, you probably didn't realize that you signed up for this too.

Dawn: No. Not at all.

Kyle: What was that like?

Dawn: When we first started dating he said ‘I had bladder cancer’, and it was just like no big deal. He needed to keep going every three months to keep getting checked and that's when he started the routine of going every couple of months. He would have the surgeries, then the chemo. We got married in May and Dr. Haber did the surgery in August. So it was very overwhelming. Scary. Every day you still have it in the back of your mind but it's a blessing.

Kyle: Dr. Haber, did you know right away what type of surgery and treatment Al needed?

Dr. Haber: Every time we see a patient with bladder cancer there are different options for treatment. Our role is to give the options to the patient. We give the pros and cons of each treatment and help them make a decision, which would be the best treatment for them. So when I saw Al, he already had treatments that were done so I gave him the other options and I helped him choose which would be the best treatment for him.

Kyle: And what were those options?

Dr. Haber: So like Al said, he failed what he called BCG treatment which is an intravesicle treatment that we do to avoid the tumor from coming back or progressing to a more aggressive type of cancer. In his case, those treatments were not working and the tumor was coming back very quickly after those treatments. So the decision, given his age, would be to be more on the aggressive side than avoid any risks of progression, any risks of the tumor traveling to other organs, traveling to lymph nodes, traveling to other places. So given his age and that he was failing BCG very quickly, we decided to go ahead by removing his bladder, removing the prostate, removing the lymph nodes, and gave him the option of a different type of diversion. Since he was young, the neobladder, which we would reconstruct a new bladder out of bowel, was his best option. That's what we told him he would be happy with.

Kyle: So for people listening, you said something that is pretty crazy to me when I first found out about it. You reconstructed Al’s bladder using his small intestine. That's not something that most people hear every day. It sounds like a medical phenomenon but for you, this is part of your job every day.

Dr. Haber:  Reconstructing the neobladder out the small bowel is not something new. This has been done for a long time. Doing it in a very young patient is rare, and doing it through a small incision is also very rare. However, the goal is to get patients back to normal and give them the normal quality of life. Give them a good quality of life after surgery. We need to do what needs to be done to get people, especially the young people, back to a normal life with their family and do what they would want to do if they didn't have this this cancer and to look at this as a bump in the road. As a physician, I’m privileged to be able to take care of patients like this and try to get them back to a normal life.

Kyle: Can you walk us through that process of the surgery of reconstructing Al’s bladder? How do you even go about explaining that in layman's terms?

Dr. Haber: So the way we do it now is we do it robotically so the whole procedure is done robotically. It's called the robotic radical cysto-prostatectomy and bilateral pelvic lymph node dissection intracorporeal neobladder.

Kyle: Try to say that ten times fast!

(Laughter)

Dr. Haber:  What it means is we were removing the whole bladder and the prostate that is attached to it. We're also removing the lymph nodes that are surrounding the bladder or the prostate. Also those that are surrounding the vessels that go toward the pelvis all the way up to the aorta, the major vessel that comes down from the heart. So all this area, all the lymph nodes surrounding this area, are removed. Then we take a long piece of bowel, I say we borrow a piece of bowel, and we reconstruct from this piece of bowel a bag that will reattach to the urethra. We reattach the ureters, those small tubes that come from the kidney down to the bladder, to the bag made out of bowel. So now you have the kidney producing urine, the urine going through the ureters, those tubes get into the male bladder, the male bladder is attached to the urethra and that's how the urine gets out. The purpose for it is to function like a bladder. However, there is a learning process and we taught Al how to recognize when the bladder is full and how to empty it. Now it's becoming more and more a normal process and also you know the side effects of borrowing a piece of bowel. The bowel secretes mucus so people need to keep hydrated. Since it’s made of bowel there is a risk of leakage so the patient leaks at night more at the beginning than later on, but this is a known problem with neobladders. All those things are explained to the patient so they know what to expect and how to take care of the neobladder and make sure it works for a long period of time. For Al, when we did the surgery he was 36 so this bladder hopefully will function for 60 more years or more. We want to get him over 100. So this is the goal.

Kyle: Al, how was the recovery process?

Al: There were some times where it was it was tough. There were a few setbacks, but to be expected. There was some pain involved, a lot of irrigating the system non-stop like how doctor had said. But there were just some minor setbacks that he took care of. Being off of work for so long. I guess one of the things that I was nervous about coming out of the surgery is that he wasn't going to be able to connect everything the way it needed to be and that I would have to come out with a bag or another way of urinating. I was so young, I'm a plumber and I'm constantly on my knees and rolling around in this and that. But when I came out of surgery and he said that he was able to stretch my ureters to make everything connect and that I would be urinating like normal, using different muscles obviously because the bladder is gone, but that took a little bit of time. I was just happy that I didn't have to come out with the bag or anything like that. It was very possible that if things weren't going to go the right way then I was going to have the bag or the little port or whatever it was at that time. Luckily he was able to stretch everything to make work. The ureters. The kidneys. Everything like he just talked about.

Kyle: You also said that you lost 40 to 50 pounds.

Al: Yeah I lost a lot of weight, a lot of weight.

Kyle: How was Dawn's support during your recovery process? You talk a lot about her and you can tell how much you love her.

Al: She did well, she did really well. She took care of me the entire time. She did everything, she irrigated, me she did everything.

Kyle: That's love.

Al: Yeah, she did everything. She could have easily walked away from the entire situation when she found out about the cancer. But she didn't and then she met Dr. Haber. She liked Dr. Haber so she felt very comfortable with everything. But yeah, Dawn did everything, she did everything for me. So I’m lucky.

Kyle: Do you have any side effects today?

Al: Not so much. Once in a while at night if I don't get up a couple of times that night there will be leakage, but that's just like anything else. Overtime you get you get used to it. I get up two or three times a night and go to the bathroom, but other than that, nothing. He was able to save all my nerve endings in my man parts so everything worked exactly the same before the surgery as after the surgery. That was another thing because at 36, 37 years old your sex life is a huge part of your life. I was just nervous that it was like, ‘oh geez, I’m 37 and it’s not going to work’. The doctor was just like ‘Al, don't even worry about that. That's on the back burner right now. You get over that hump and there are other things they can do for that.’ But luckily when I got out of surgery he said he was able to save all my nerve endings and I was like, ‘yeah, that's awesome!’ He did a good job with that. Good job doc.

Kyle: I know with the surgery and removing the prostate you lose fertility. But you had banked your sperm as you guys were newly married and you wanted to have kids. Now you have a four year old daughter. What was it like to become parents?

Dawn: Well, it changes your life completely. I’m a mom already. I have a 19 year old. Then having her with him was just, she was such a miracle for how she came. Obviously we didn't know what was going to happen. When we first met Dr. Haber he said you have six weeks to get everything in order. So I’m like, well we have to find a sperm bank, we have to do all the stuff and it's just so scary. You have no idea if you're going to be able to have that and I wanted him to share that as being a parent. It's amazing. It's amazing.

Kyle: What's the best thing about being a dad?

Al: She looks like me!

Kyle: So she's good looking…she’s a charmer…

(Laughter)

Al: Yeah, she’s very good looking, she has her mom’s attitude.

(Laughter)

Al: Just getting to share your life with somebody that's like a mini you and see how she's half like Dawn and half like me and just seeing her grow. That's the best part. The whole surgery, everything that happened, taking the prostate out and the bladder and reconstructing and having to save the sperm and the back and forth to the doctor's office. Some of the setbacks in this and that, it was all worth it once we had a little baby. It was all worth it. I’d do it all over again. 100% without a doubt.

Kyle: Al, there was a conversation you said that Dr. Haber had with you during the recovery process. Things were going pretty slow and you were struggling because you wanted things to go faster. Can you take me back to that conversation and what did Dr. Haber say to you that kind of helped put things into perspective?

Al: Dr. Haber, you probably don't remember this because you deal with a lot of different people. Me, Dawn, and my sister were in the room, maybe my mom too. It was during one of the setbacks I had and I was throwing up. Dr. Haber came in and he made everybody leave the room but me. He sat down next to me and said ‘Al, obviously you're my patient, but I consider you my good friend. To see you go through what you're going through, it hurts me. But there will be a bright side to it eventually.’ You don't hear that from a lot of doctors. So many doctors are in and out. They're so busy. We've gotten to know each other so well that I feel so comfortable with him. So he didn't like lay into me but was like this is the way it has to go and you've got to be tough. I flipped out that day because I was just tired of the setbacks and things weren't moving fast enough for me. I knew it was going to be a long road but I just got frustrated. Like I said, he sat down next to me and said, ‘Listen Al, you're my patient, you're my friend. I don't like to see you like this. But this is the bump in the road. This is the way it has to be.’ So I had to listen to him. 

Kyle: He set you straight a little bit.

Al: Yeah, he set me straight a little bit.

Kyle: You need those conversations with those people in your life to do that.

Al: Heck yeah.

Kyle: So we're going to play a little game called Go Fish. We have a fish bowl right here. If you want to take the lid off and there are three questions in there. If you want to pick one question.

Al: Me first, or does it matter?

Kyle: Yeah, these are all for you. Read the question and then give us your answer.

Al: What was the most difficult moment and how did you overcome it? Probably learning that they were going to take out the prostate. Knowing that they're going to take out the prostate and thinking that there goes the chance of having a baby normally like the way it's supposed to go. I wanted to have kids and I knew Dawn wanted to have another child. Talking to her and then talking to Dr. Haber and he said, ‘Listen, to save the sperm you've got time.’ So I think that was probably one of the hardest parts. And then Dawn had to take off the same amount of work that I did because she stayed home because you can't be at home by yourself after the surgery. So knowing how she was missing work and I was missing work, but we knew together that it was part of the game plan.  Slowly but surely you get through it and there is a light at the end of the tunnel. Now I feel good, I'm healthy and that's the biggest thing. Everybody's healthy in the family so that's all that matters.

Kyle: Question two.

Al: My turn again? I get to do all these right?

Kyle: You get to do all of them.

Al: What's the one thing you cherish now? My life, my family, my daughter, Dr. Haber…. he saved my life. He did it. You know, she saved my life, he saved my life. We're lucky.

Kyle: What are some of your favorite things you guys like to do as a family?

Al: Eat. Sleep.

(Laughter)

Dawn: You like food.

Al: Vacations are fun. Just hanging out. We have a big Italian/Sicilian family so when my side of the family gets together and her side of the family gets together, it’s like a party all the time. Our families get along awesome together so the family just being together is the best part.

Kyle: That's probably something that it's easy to take for granted when you're healthy because it's just part of your normal but that may one day be taken away.

Al: Sure, it’s huge. With anybody in your family, mom, dad, grandparents, nieces, nephews, anybody…

Kyle: Last question.

Al: What three words come to mind when you think about your wife? Oh geez.

Dawn: Be nice.

Al: She’s strong. She's ambitious. She's beautiful. How are those?

Kyle: Those are pretty good. What do you think Dawn?

Dawn: I'll take them.

Kyle: And you guys first met in high school right?

Al: Yeah. We met in high school and I was actually in her first wedding believe it or not. Yeah, I was. (Laughs) So we met in high school and then we went our separate ways when she got married and I got married. Then she got divorced and I got divorced and there was a friend of the family that was like, ‘Hey Dawn, you know Al is single?’ and they would come to me and say, ‘Hey Al, you know Dawn is single?’ I was like, nah, I'm good with my single life right now, it’s fun. Me and the dog. She lived like two streets down from me in Parma. The one day we were talking on the phone and I was getting ready to go to a concert. So after the concert, I went over there and she still looked exactly the same. She's still tiny and everything. She was gorgeous in high school so I was like ‘Oh yes! She looks exactly the same, this is great!’ We started dating and then one thing led to another and here we are. It turned out well, I got lucky.

Kyle: What do you love best about Al?

Dawn: He’s probably the strongest person I know. Going through all that and he never complained once. Never once. He’s very hard working, he’s very loving, a great dad, and step-dad.

Kyle: Dr. Haber, do you have any final thoughts to share with us?

Dr. Haber: Again, as a physician we're always touched by the fact that we can help people. I'm just part of a team who helped Al. I feel honored and privileged to be able to help him and not only help him, but also help the family around him. The goal is to be one team against cancer. The goal is to win and to get the patient, Al, and his family back to a normal life. For us to see patients going back to a normal life and building a future is a very humbling experience.

Kyle: And I know a lot of men have trouble wanting to come to the doctor. If something doesn't feel right we don't want to come and get checked out. But I know, Al, you've been such an advocate for men's health. You work with a lot of men and always encourage them to just go to the doctor.

Al: Yeah, yeah. You got to go. Every guy knows their body. I think that as soon as you see something change with your habits, you've got to go to the doctor. You’ve got to fight and win it. I'm lucky because Doc found it when I was real young so he was able to be a little bit more gung ho about getting rid of it and the way that he treated it. You got to go and get your prostate checked or whatever it is. Some guys might not like to hear that but there are worse things in life. Trust me, that's nothing. In the scope of things getting checked is nothing. So you got to get it done.

Kyle: Dawn, Al, Dr. Haber, thank you so much for joining us today.

Al: Thank you.

Dr. Haber: Thank you.

Kyle: And thanks to all of you for listening. You can find additional podcast episodes on our website http://my.clevelandclinic.org/podcasts, iTunes, SoundCloud, Stitcher and Google Play. We'll see you next time.