Bladder Cancer: It's More Common Than You Think

[Music] hello everyone I'm Kim Douglas and welcome to your healthy dose it's a podcast about current trends in healthcare on today's episode we're going to talk about bladder cancer but this isn't just any Ordinary episode because it's the first time that we get to hear from both the patient and their doctor at the same time our first guest is Lee Smith who is a recent bladder cancer survivor congratulations thank you and next to him is one of the doctors who saved his life Dr Jennifer Linehan you are a board certified urologist and an associate professor of Urology at Urologic oncology at St John's Cancer Institute um welcome to you both we're so glad that you're here today and you know this is a topic that we really don't hear that much about so Dr Linehan do we know what causes bladder cancer and is there anything that we can do to try to prevent it there are some causes of bladder cancer that we know of the first one is definitely smoking aniline dyes sometimes like paint thinners if you have people that work with all those kind of things kind of chemicals as well as sometimes over using narcotics and then there's some Chinese herbs called aristocratic acid that are also known to cause bladder cancer but of all these things you know Lee did not do any of these things we live in a very healthy community in Santa Monica and I will still see patients that come in with bladder cancer and there is some genetic disposition we don't completely understand that yet I think that's on the Forefront but I know it's was really frustrating for Lee looking for the answers of you know why would this happen to me right so when I got the news that I had cancer I went through you know period of like a week or two where it was uh why me and it was really depressing and the fact that there was no apparent cause um was frustrating there was nothing I could point to there's nothing I could say gee this is where I messed up and this is why I have this problem it was more sort of like you know getting hit by a bolt of lightning on a clear day and um fortunately that didn't last for a long time it again it was sort of like a week or two and then I sort of got to a place of well why not me like bad things happen to people all the time I'm fortunate I got to the age of 56 without having something like this happen and um let's start moving on instead of sitting around feeling sorry for yourself but definitely the ambiguity of why this was happening contributed to that sort of feeling of depression and you know woe is me yeah and you didn't do anything wrong you feel so I totally relate to that what were the events that led to your diagnosis and did you have any symptoms so originally I thought I had a problem with my prostate I was having difficulty urinating I'd had an elevated PSA so I saw treatment from a urologist affiliated with a different West Side Hospital and sort of pursued that path for about six months I did have I did feel better and then I had a an executive physical and I got a clean bill of health with one exception which was that there was an anomalous blood result related to kidney function so I pursued that uh shortly thereafter with my general practitioner whose name is Dr Jill way she's uh with St John's physician partners and over the course of a couple weeks that blood test kept getting worse and worse and it was a real head scratcher it was like you know what's going on so at Dr Way's insistence I went in on a Saturday to the emergency room at St John's and I had an ultrasound of my kidneys because we thought there was a problem with my kidneys and while I was there they also looked at my bladder and uh the nurse came back and said well your kidneys are fine but there's a there's a large mass in your bladder and part of that experience that I'll always remember is that she then said good luck to you oh goodness and that was sort of the first clue that you know we were not in Kansas anymore Toto yeah um and uh so on Monday uh that was on a Saturday on Monday I talked to Dr way she referred me to Dr Linehan um Dr Linehan and I had our first phone conversation on Wednesday I went in for pre-op and met Dr Linehan in person for the first time on Friday and then the next Monday which was only 10 days after my ultrasound I had surgery to remove the tumor that was fast so um in in the medical world that was like Lightning Fast yes absolutely um so in full disclosure we know each other's families and uh we actually started way back in preschool um I know your family and I know how close you are so you shared with us that one of the hardest things was sharing this news with your family tell us a little bit about that yeah so I had the surgery on uh Monday and they then biopsied the tumor and on Wednesday Dr Linehan called and said uh you know this is muscle invasive bladder cancer and the standard course of treatment is to have three months of chemo followed by surgery to remove your bladder and your prostate um and you know my head was sort of swirling with that information uh but that day I talked to each of my four boys and my wife and you know cancer has just the word has a real stigma to it um for one thing uh it's really easy to sort of catastrophize when you hear that word people you know think you're gonna like Drop Dead like that moment right away I'm sure you experienced a lot of this in your journey and um you know I was just used to being the provider the source of stability uh and um I really had to start leaning on my family for support and help particularly I mean the three months of chemo were not the worst in the world but it was rough and then you know Dr Lanahan was always uh very honest with me that the first three months after surgery were in her words brutal yeah and because she she was right it was it was brutal and um just you know having that that love and support my my two sons who lived in San Francisco immediately moved home uh which they could do because it was during covid and they they could work remotely but it was a big you know a big shift in the Dynamics of our family yeah it's such an active family and you guys always doing stuff so Dr Linehan how do you prepare your patients likely once they have been diagnosed with cancer so it depends on what type of bladder cancer so there are bladder cancers that are not going through the muscle wall of the bladder there's three layers of the bladder some are very superficial and you can actually put chemotherapy inside the bladder to treat some of those for Lee because it was going into the muscle wall of the bladder that changes the prognosis okay so we know at that moment there's a high chance there's a 30 chance that when Lee walked in the door he already had metastasis to the lymph nodes we may not see it on the CAT scan but it's micro metastasis so that's what the chemotherapy is actually for to kind of catch all that stuff before you take out the bladder into testing so not all bladder cancers you're saying has to have the bladder removed not all bladder cancers have to have the bladder removed only if they're muscle invasive like that and even the patients who are muscle invasive you can do what we call a bladder sparing protocol which is where you give chemotherapy and radiation to the bladder at the same time the problem with that is is that Lee is very young and that has a much higher chance of recurrence and when you try to take out a bladder after radiation there can be a like other difficulties with that so we really felt that for Lee because he had another 50 years of life left that we're gonna get there chemotherapy and removing the bladder was the best yeah and what options does the patient have if it is removed so if we need to remove the bladder there are three different options you can offer the patient to do the Reconstruction of the bladder I always tell people that this is one of the most complicated surgeries even more so than like a heart surgery because with a heart surgery if there's a blocked vessel they open the vessel they reconstruct the vessel but relatively the anatomy is still the same I am physiologically changing his entire body by taking his bowel which has done a very different job his entire life and making it into a container that holds urine I mean the bowel's job in a sense is to absorb nutrients right but now in Lee it's going to hold urine and I actually don't want it to absorb anything I just want it to hold the urine and then empty the urine so you can offer patients three different options depending on age uh depending on sort of their Mobility actually and what their kidney function is one thing you can do which I always call the Toyota Camry of bladders is you can do something called an ileo conduit it'll run forever it's the surgery times are shorter it doesn't take a lot of Maintenance and basically you drain urine through the bowel into a bag on your abdomen so your kidneys are hooked up to the little piece of bowel it actually there's a little stoma on your skin and you put a little ostomy bag around it and then they empty the bag and then the second option is what Lee had which I call the Porsche of bladders it's a lot more maintenance it's a longer surgery um he may need to to actually do some of the maintenance himself at home life long and this is where you take the bowel you actually make it into a bag and then hook it back up to his urethra or the P channel so it's almost like his normal bladder although he doesn't have the same sensation of urination it's probably more like a fullness now correct yes and then the third it's something called an Indiana pouch which I call the Lamborghini of Ladders because it takes so much maintenance and that's actually where you have a little opening on your belly it's very small and the patients actually catheterize with a tube into their own belly to remove the urine every four to six hours and all those things are done for various reasons but yes it's one of the really rare surgeries that we do more like transplant where we are physiologically changing their body literally that is so how long was Lee's surgery was at eight hours 12 hours 12. and is that normal for you would that be a normal yeah because usually I work in combination with Dr Wilson who's my partner and he will usually take out the bladder but then he has to do all of the lymph nodes in the pelvis you know sometimes almost up to the kidney because for bladder cancer the more nodes you get out the better the patients do so he does that portion of the surgery and then I will usually come in and do the Reconstruction and with the Reconstruction there's a lot of Little Steps because you have to take apart the bowel like harvest the bowel put it back together make sure that's fine and then hook up the kidneys so how long were you in the hospital and you were injuring covid how was that uh well Dr Lanahan was right it was brutal um I was in the hospital uh three separate times for about a total of three weeks um the first time to recover from the surgery then I had to go back a second time uh courtesy of the LA fire department because I couldn't get out of bed uh because I had a partially obstructed bowel and then I had to go back a third time because I had a completely obstructed bowel and I had to have emergency surgery uh with Dr Linehan and Dr Bill check to resolve the obstruction and to answer the second part of your question being in so this was in February of 2001 and it was really the height of covid there was an entire floor at St John's devoted to covet patients no visitors were allowed and it was both lonely because I mean there were days where I couldn't even scratch my nose and although the nurses were fantastic and did a great job taking care of me they had as you would expect other patients to take care of so they weren't always there and it just was you know it was just rough being alone when I was really not doing very well and also just sort of the fear of you know that was still relatively early in covid it was before the vaccine and it's you know the last thing in the world I need to do is on top of all my other problems um get coveted so it was uh it was a it was a scary time very and thank goodness for your strength you must be a very strong man um now let's touch on the topic of your relationship with Dr Linehan and the other team members at St John's the other doctors surgeons um so you know as we talked about uh Dr linen and I both have roots in Northern Ohio right and um there are some aspects of growing up there that you know breed uh sort of what I would call Grim determination and also uh sort of sarcastic humor so we connect on we connect on that level yeah um so every week I was all of a sudden meeting with a different St John's doctor whether it was Dr Linehan and then I met Dr tadowski which was the oncologist who led my chemotherapy uh Dr Wilson who participated in the surgery uh Dr way who was my general practitioner Dr Ted Walker who cleared me uh for surgery he's a cardiologist and then you know Dr bilcek Who did the emergency surgery on uh my Twisted intestines um so it just was again feeling like everyone was on the same page and that everyone was coordinating with the other doctors so for instance you know when I went to meet with Dr Tad Walker I didn't have to spend half an hour telling him you know here's my story and it's a long complicated story he already knew and that just made it again so much easier for me as a patient and it was a lot more efficient because those as you know those appointments take up a lot of time and I had other things to do hopefully and um you know just again developing that feeling of trust like this organization really wants what's best for me and they're working really hard to make sure that happens and that that was you know during a pretty dark time that was a real positive yeah I think you know when we see patients we always we write a note in the chart right but when you call another doctor when you talk to another doctor Dr Tad Walker we're going to do this surgery here's what's going to be involved here's what I need to know it's a it's a quick understanding and it really helps them focus on what they need to do for the patients and the unique thing about St John's is that all of us like Dr Tad Dr trodowski Wilson Dr way we're actually more than just colleagues we're also friends yeah we're a very close-knit group and we constantly communicate each with each other and so I would basically send out message blasts about Lee to everyone or call them very easily and say this is what I need this is what we need to take care of and that obviously shortens the length of care because things are going to get done much much faster it's not like okay well go call Dodger tadwalker's office and wait two weeks for your Cardiology appointment no I need you to see him like tomorrow because we're going to be doing surgery next week so I think that's the important you know part of all of us working together that is very important and you're so right it's Priceless and also when you were talking Lee about just repeating your story I know when I was going through mine you know you're weak anyway and you're scared and you're hurt and then the energy it takes to tell 10 doctors the same story so this is amazing at St John's to have that camaraderie right so let's go into the future now how does it look for bladder cancer and what types of Innovations are being made and are there any promising clinical trials there are definitely more and more promising clinical trials for patients like Lee especially with the muscle invasive bladder cancer because those are the patients that you know will suffer the most and have the most you know chance of recurrence and death Etc so first of all again going back to early detection there's now seven bladder cancer tests on the market a lot of them I was involved in some of the initial research getting those those are urine tests essentially we now have newer blood testing that will actually find Snippets of DNA in their blood DNA specifically from the cancer now what this will tell us ahead of time is are these patients going to be susceptible to chemotherapy do they need chemotherapy are they going to be going right to should they be going right to surgery or should they have immunotherapy and that is a very easy it's almost like a liquid biopsy test now that we have that Lee actually wasn't around that much even when you had your cancer and we're starting to do a lot of initial investigation with that as well and the drugs as far as that are coming onto the market for invasive bladder cancer for example if we were to recur anything else were to happen there's like a slew of clinical trials that are now ongoing with a group called swag so that would give him you know five or ten different options if needed so I think that that is a really important you know step for bladder cancer and I've been a purchase I've been lucky enough to be a participant in a lot of what we call bladder cancer think tanks where they get all the investigators from across the country they stick us in a room and say talk to each other figure out what you all are doing and then work together because you if someone's doing something at you know at another hospital how do you know yeah and then we're doing the same thing and if you start putting stuff together like research gets done way faster for the patients so I think those are some things that I I really appreciate about being at St John's being part of the cancer center um and working with patients likely well Lee so how is the recovery process going and I hear rumor has it that you recently retired and we want to know how are you spending your free time besides bringing flowers every day to the doctor at St John's exactly um it's more like Pop-Tarts oh we like Pop-Tarts oh yes we share an affinity for Pop-Tarts oh you too um so it's been a gradual process uh you know the the period immediately following the surgery you know I had I had three infections I I lost 45 pounds at one point in addition to the emergency surgery that we already talked about I mean the first you know the first three months were really rough and then it just sort of slowly got better I was able to get out of bed I was able to start walking around um one day uh my family made the mistake of leaving me at home by myself and so I broke out of the house and uh with a walker walked a block down the street I was really happy I didn't fall over and uh just things got progressively better I've had to learn to adapt to the new bladder it doesn't work like the old one did so that's been a process and just you know getting my strength back and uh went back to work for about a year and in March of this year I retired and retirement is great I mean honestly if I'd known retirement was this good I never would have started working in the first place in the first place but I you know I just I sleep better I eat better not as many Pop-Tarts and uh I get some form of exercise every day I get to spend a lot more time with my wife we have you know breakfast or lunch together a couple times a week and we've done a little bit of traveling I I still I'm a little leery of leaving the country but within you know the within the 50 states we've done a bunch of traveling just to visit family and visit uh kids and um I I just physically feel so much better I mean the best the biggest change is I have maybe five percent of the stress yeah that I had when I was working so uh oh good you look like the picture of Health you really do you look great now Dr Linehan I've heard that you like to do more than just give your heart and soul to your patients and uh you also give back to the community not just here at St John's can you tell me about how you like to serve underprivileged families and children yes so I get the very distinct honor of seeing patients in the Venice Family Clinic pro bono so they can come over and see me they have access to my clinic and actually St John's is incredibly supportive of this they will help provide you know Imaging for those patients testing for those patients anything that they need and of course like the care is all free and my care is all free um oftentimes those patients would never have access to this kind of care if if we didn't like open the doors for them um they don't even know sometimes who to ask for what to ask for or what they need some of them have had bladder cancer prostate cancer all sorts of things that had you know they gone somewhere else or not had insurance would have been you know undiagnosed for years for sure wow well you really are a very special person and um in closing I just wanted to see if both of you had any last minute thoughts or any pieces of advice or inspiration that you can give to our viewers and our listeners let's start with you Lee sure um I mean these are are sort of trite and sound like cliches but if you're facing a problem like what I did uh the first thing is to get the best doctor you can and I was really lucky because I got the best doctor it did um the second thing is just uh do what they tell you to do right show up when you're supposed to be there follow the instructions um and then third just you know take it one step at a time I mean uh Winston Churchill once said that if you find yourself in the middle of Hell keep going and that's what it was like just just trying to get through today hoping that tomorrow's going to be better even though there are a lot of days where tomorrow wasn't better it was actually worse but over time it does get better and not spend a lot of time worrying about well what's it going to be like three months from now because there are 90 days between today and three months from now and every one of those days is going to have its own ups and downs and unique challenges and you sort of need to focus all your energy on just getting through whatever those are on a daily basis and I'm sure you know you experienced all this in your own care and treatment so none of this is Earth shattering news to you but it's just you know trying to be present and trying to just get through every day and by God some days the next day was better yeah absolutely and what about you doctor I think it's you know I said this before about having a team to support and take care of patients who are undergoing bladder removal and having chemotherapy you know because again these surgeries are complex and patients need to understand you know what's going to happen at the road ahead of them I wish I could tell you that oh don't worry it was going to be great and easy and it's one of the reasons why I wanted Lee to tell his story because there are other bladder cancer patients out there like him and they will ask me does this happen to other patients yes it does we know it does and we're trying to make the surgery the system better and one of the ways to do that is to have all of the doctors so that I can provide Lee all the things that he needs at a moment's notice and all my patients you know have direct access to me he would see me every week in the clinic he would hate to text me sometimes because he knew what I was going to say coming to the ER I don't want to go into the ER I need you to go into the ER right now before this gets bad and he would do everything I said whether he liked it or not and he had such a hard time with covid that was just rough to have a big surgery be sick and not have your family but one of my Fondest Memories was when Talus and the boys came and they had the big sign outside St John's and we were like looking out the window waving at that was that your birthday no but they had signs and balloons and it was really heartwarming it was very very heartwarming and she's like okay you have to take him over to the window and so he can see everything so it was very nice but I mean that was just so rough on patients yeah I mean the only like human interaction he would have sometimes was me or the other doctors and maybe the nurses who were like running in and out of the rooms and everyone was afraid of giving out everyone sick so I mean you had a lot of challenges and you're my hero well thank you both so much for being here you know like I said at the beginning of the show this is the first time that we've really done you know the patient the doctor and it's such a difficult topic but you guys made it so warm and just uh informative to our listeners and our viewers so thank you both for being here we really appreciate it thanks thank you yeah we want to thank St John's Health Center Foundation for making this podcast possible thank you all for joining us today and please send us your health questions to your healthy dose podcast gmail.com and doctors like Dr Linehan and so many others will be able to help us answer those for you so until next time I'm Kim Douglas with your healthy dose foreign [Applause] [Music]

Channel: Saint Johns Health Center Foundation

Views: 23,739

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Id: hj3LevmhP7E

Length: 28min 28sec (1708 seconds)

Published: Fri Feb 03 2023