Transcript of Part II of Quality of Life After Bladder Removal Surgery with Dr. Bernard Bochner

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  
Rick Bangs:I’m pleased to bring you part two of my two part conversation with Dr. Bernie Bochner, a urologic oncologist at Memorial Sloan Kettering Cancer Center, and a professor in the Department of Urology at the Weill Medical College Of Cornell University. He has extensive experience with bladder cancer surgeries, radical cystectomy, pelvic lymphadenectomy, and the various urinary diversion options. Dr. Bochner: is actively involved in research, focused on improving cancer diagnosis, patient treatment options, and enhancing recovery after urologic surgery. His work is published in many high [inaudible 00:01:12] journals and he has over 275 publications to his credit. He is also a member of the BCAN Scientific Advisory Board. So I’m going to put ourselves in the position of a patient and I’m talking to my doctor and I want to know about outcomes from radical cystectomy. So what advice would you have for me as a patient? How can I broach this conversation with my doctor?  
Dr. Bochner:Well, I think it’s critically important to have this discussion with your doctor, because you, as an individual, everybody’s going to start at a different point. Everybody has their kind of special things that make them unique. And you’re not just a bladder walking into the doctor’s office on two legs. There’s a lot of other moving parts, and there’s a lot of unique aspects of your life, whether it’s physical issues, or emotional issues, family issues, financial issues, and these are all obviously weighing on your mind. And it’s important for you to be able to get a sense from your doctor as to what it is that you should be able to expect. And so the first thing is that it’s a critically important question to ask and to recognize that it’s different, they’re going to obviously need to take all your individual unique factors when they give that information.  
 But what I tell folks is, and again, the extent of the recovery changes based upon my assessment of how healthy people are or how unhealthy they are. A lot of that’s age related, but not always. Some very healthy 70 and 80 year olds out there, that may have a different recovery than a 50 year old who’s working on their fourth heart attack and has a whole long list of other medical issues. So I try to personalize what that recovery will look like. And we talk about the initial recovery, we talk about their time in the hospital, how long it’s going to be, and just kind of day to day, what things may look like. And I try to set reasonable expectations, meaning that we can’t predict, for instance how long your hospital stay will be. There’s a variation in it. And there’s lots of bumps in the road that we may run over, or we may be able to miss that may effect that.  
 We talk about the first six weeks. And as you very eloquently stated, that’s the dark part of the recovery, where you really feel like your energy’s gone and you’re taking a lot of naps and bowel function’s a little out of whack, and you’re still trying to deal with whatever urinary reconstruction was developed. Well, by the time you get out to that three month mark, you’re beginning to see that there is a light at the end of the time tunnel. And now that we have this data, I think this is a beautiful way to be able to show people about how that first two year trajectory is going to end up looking. And we can look at all kinds of different things. For instance, some people, their body image may be critical, really important in their overall quality of life, or maybe it’s the way they’re going to interact with people, their social functioning. And others, it may be physical functioning, because there’s a need to get back to work, to make money and support their family.  
Rick Bangs:Sure.  
Dr. Bochner:So these are all things that we can now kind of point to because we did include a lot of these different measures within the study itself. And so it’s important to show that, and obviously we’re very encouraged, but we recognize that not everything returns to normal. And there were two specific areas that we found that didn’t recover to their baseline and one was sexual function. And we can talk about that in more detail if you’d like and the second was body image related to those that underwent the ileal conduit. And that would make sense because now their external body image has changed because they have a stoma, they have an external appliance. But interestingly, so many of the other emotional and psychological aspects did recover, but people still, when they pull up their clothes, they can see it and so their body image is affected with the conduits.  
 Sexual function, I think is affected for a variety of reasons. One is that the operation itself many times does not allow us to necessarily do nerve sparing surgery, related largely to the extent of the cancer that may be present, or prior radiation therapy, or prior surgical therapy that’s been received within the pelvis. And if we’re not able to spare those nerve bundles, many times we’re going to see a drop off in sexual function in men. For women, their anatomy can change. Some women were able to do a vaginal preserving surgery that allows for a functional vagina, but some women aren’t. And again, that many times is related to the location of the tumor, how invasive the tumor is. And because of that, there may be some anatomic changes that can affect long term sexual function also.  
Rick Bangs:You don’t necessarily know, as the surgeon talking to the patient and examining the patient, you don’t always know what you’re going to find during surgery versus what you’re going to find as you’re doing the examination. This whole host of things that still are question marks going into the surgery.  
Dr. Bochner:Yes Rick, you’re absolutely right. And I think that doctors need to be very open and have that conversation with people. Now, many times there are factors that may give a clue as to what we may or may not be able to do. And other aspects are sort of game day decisions where you don’t know until you sort of get a look and a feel for the tissues, because obviously the most important thing when you’re undergoing this type of a surgery is to get rid of that cancer. But we recognize that when we can, we want to do everything we can surgically to preserve functionality, because that’s obviously a very important part of many people’s lives afterwards. And so when we can, we do try to preserve nerves, or we do try to maintain the length and the circumference of the vaginal vault, if possible. And when it’s not safe, we’re just not able to do that. But it’s important to have that conversation beforehand, because clearly as we’ve demonstrated by this study, these are physical functionings that may be affected in a group of people.  
Rick Bangs:Okay. So if we think about patients having this conversation with their doctors, there were four categories that you included in this article that might help people as they’re thinking about what kind of questions they could ask. So there was one around general quality of life and function, my ability to get or move around and get through life and do work. And then there was urinary and bowel function, that’s the sexual function and the mental and emotional health. And so as a member of the bladder cancer community, I think that’s really interesting to think about how you’d apply this research, not only as patients, but as doctors and nurses. So if you’re game, I want to talk to you each of these four categories, and have you talk about how you would have a conversation with a patient about that particular category as a patient is facing radical cystectomy. So are you game?  
Dr. Bochner:Absolutely.  
Rick Bangs:All right. So let’s start with the general quality of life and functional assessments. So knowing what you know, and that includes what’s in the article, and your vast experience, what would you say to a patient who’s facing radical cystectomy about the general quality of life after a radical cystectomy?  
Dr. Bochner:So, as we previously discussed, we’ll talk about that early recovery phase, where there’s going to obviously be a hit to many aspects of this, what we would call general quality of life. And those usually try … Once you get beyond that first 90 days or so, the first 3 months is really where this data then begins to start informing us about what happens after that. And so what we tell people is, look, you have to understand that this is a process. This is going to be a recovery. It doesn’t happen in a few months, but the good news is, is that what we see is that as people begin to get beyond the first three to six months, we begin to see very nice recovery of general overall quality of life, as well as a lot of the functional assessments. So physical functioning and things like that.  
 And it’s at that point, that people begin to start sort of reengaging with the activities that are important to them, whether that’s going back to work or getting out and swinging the golf club or some people who really find swimming or things like that, a big, important part of their lives. They begin to start reengaging with that. And this data will tell us that the measures of general quality of life and the functional assessments basically are going to return back to baseline in the majority of people. Now, obviously this data tries to in incorporate the vast majority of the responses, and there’s going to be outliers. Obviously there’s going to be some folks that struggle for a little while longer, but what I can tell you is that the vast majority of people who are included with, not just the solid line that runs through these graphs, but the shaded areas around there, which really now incorporates sort of the range of the majority of people’s responses are hitting back to that baseline, which is getting back to where they were prior to surgery.  
Rick Bangs:Good. What about urinary and bowel function? What would you say to patients about that?  
Dr. Bochner:Yeah, so obviously this is going to vary depending upon the type of reconstruction that’s performed, which would make sense. If you’re dealing with an external appliance, you’ll have one set of issues and recovery, as opposed to somebody with a neobladder where we know that there is a recovery phase where the control muscle is relearning how to get stronger. And the neobladder, which has to mature in its size and that takes time. And it’s the combination of two, having a functional volume of the neobladder and a strengthened external sphincter. That’s when you begin to see those control come back. And so what we can tell folks is that again, once you get beyond that six month period, we begin to see some very nice recovery of urinary and bowel function. And by the two year mark, people, they’re reporting that they’re able to get back out to the same values that they reported prior to surgery.  
 So it can take time and you can expect changes particularly early on. But what we found is that there wasn’t a dramatic drop off even early on, and whatever drop off we saw tended to recover back to baseline functioning. So I think that in the long term, people should expect given modern surgical techniques and the type of support that most major centers are able to provide, that this is also going to recover back to baseline.  
Rick Bangs:Okay. So the third category is sexual function.  
Dr. Bochner:So sexual function is one of the domains that we saw not recover back to its baseline. And I think that this is really important to sort of delve more deeply into. So what’s critically important is to try and separate out what we see in men and what we see in women, because obviously they’re very different measures, very different issues, different anatomic considerations at the time of surgery. So with men, what we find is that we’ve known for many decades, that the important aspects of recovery of sexual function after this type of big pelvic surgery in large parts related to what your baseline function is. And what we found, particularly in the ileal conduit group. Remember now, these men on average, age 72 years of age. So it was a little bit older group of folks. At baseline, they already were reporting significant drop off in erectile function. And we know that even with nerve sparing surgery in that setting, it’s very difficult to maintain that level of already depressed function.  
 On top of that, we know that from a cancer perspective, there are just certain situations where it’s not safe to spare the nerve bundles because of the proximity of the nerves to an area where there may have been invasive cancer. And so it’s important for people to recognize that in certain situations, there may be continued drop off or a significant drop off in the ability to achieve spontaneous erections.  
 Now, having said that, as we’ve looked deeper into the data here, there’s also so a group of people with very good preoperative sexual function, who are going into surgery with earlier stage tumors. And that’s the perfect situation where we’re able then to do nerve preservation on both sides. There’s two nerve bundles. One on the left, one on the right. And in that setting, we find that then we have good function going into surgery and we’re able to do good nerve sparing surgery, that a significant percentage of people are able to preserve that function or recover that function with the help of some type of oral medication: Viagra, Cialis, something like that. And so, again, the recovery sexual function if you look at the entire group is starting at a depressed level because of a variety of reasons, big surgery, lower starting points, inability to spare nerves on many men will see that the function overall will drop off. But within that sub … There are subgroups of people that actually are doing quite well, but things have to line up appropriately in order for that to be achieved.  
 For women, we’re looking in detail in the subset of women that had surgery as well and we’re looking as well at their baseline function. What type of anatomic changes have occurred? Meaning are we able to do vaginal preservation, or a reconstruction of the vagina, or was there a need to anatomically change that so that sexual function would be much more difficult to achieve? And what we found was actually quite interesting. We have a separate manuscript that we’re putting together that is very close to being submitted in which we found women had a variety of baseline measures. Some were reporting that they were sexually active. Some were not so much, so some just reported no sexual activity. And then we looked at what happened afterwards and we tried to pay attention obviously to what we did surgically. But for women who were able to preserve their anatomy, it was quite interesting. We found that some women who were sexually active were able to maintain that sexual activity, some did not.  
 But what was also quite interesting is that some women at baseline who reported no sexual activity who had their anatomy preserved, demonstrated a recovery of that sexual activity afterwards. And so I think it’s really important for people, women to have that conversation with their doctors, and for doctors to recognize that just because somebody reports maybe prior to surgery, that they’re not active, does not mean that we shouldn’t do what is medically appropriate, surgically possible to maintain that opportunity because some women are going to switch back into that a group that are active.  
 And so I think that this data should provide the impetus to be more focused on trying to help maintain that part of people’s lives, women in particular, but men as well. So complicated answer. But again, I think that in general, we’ve got to be honest. We’re going to see some of changes in many people, and that has to be discussed before surgery and the options to help with that afterwards. But some of this data also provides an opportunity to recognize that there are subgroups of people where this is quite important and we need to do what we can when it’s appropriate to try and maintain that opportunity after surgery.  
Rick Bangs:Yeah. And I think the point you’ve raised about unpartnered men and women, I think that’s an important point that sometimes gets lost. So let’s talk about the fourth topic, which is mental and emotional health. And it really doesn’t get the adequate attention that it deserves, but there’s research that suggests that it’s actually a pretty common challenge. And I’m curious, do you ask patients about mental and emotional health or do you find that patients and caregivers bring that topic up? How does this topic get discussed?  
Dr. Bochner:Well, I think that in general, it’s probably an area that is overlooked in many of the discussions that occur preoperatively. And what this data I think helped us understand is that for many people, this is actually very important. We do have a series of questions, evaluations that are done for folks. And it’s trying to identify in general, maybe some of the more major issues that people are facing. But listen, I mean, having done this for many years, I recognize that there’s probably no bigger stress for people and their families to undergo not just this type of surgery, but any type of cancer related surgery can many times lead to an exceedingly high level of stress for people. And sometimes that brings out, unmasks some underlying emotional issues. Depression, I think is a very common response, especially in that early postoperative period for many people, especially as they’re going through that sort of dark part of the recovery where their energy is just sort of sapped and they’re just wondering if they’re going to get back to their lives.  
 I think that this data was really quite encouraging because many of the measures focused specifically on mental health and life satisfaction, stress and distress. And what we found was that there was a recovery basically in that people began to start reporting baseline levels usually by about 12 months or so, we began to see that people had sort of gotten through the tunnel if you will use, if we want to use that analogy. And in my practice, I encourage people to use whatever resources are needed to get through that. If that means getting professional help to help with depression or starting an antidepressant, to be able to get through that, it’s important for people to get that help. What I’m hoping is that this data provides people sort of a view of what’s ahead, that there is that light out there, that they are likely to recover. And if they can just hang in and get the help that they need, that things are going to get better.  
 But Rick, to your point, I think it is an area that probably doesn’t get as much discussion time as it should, and this can be really critically important. And so what we’re hoping is down the road, by providing this information, and perhaps maybe this will come out of the interview data, that we’ll be able to recognize that these types of stresses that people are undergoing are very individualized. And so it may be that some people are just really worried about finances and their ability to just physically get better so that they can go back to work and pay their bills. And there may be others where they’re just terrified that their ability to relate to others. Maybe people that they’re close with or into it with may not recover and that’s what they’re worried about.  
 And this can provide not only the chance for people or patients to look at this, but also for doctors now to say, look, here’s really kind of what you can expect. This data should be able to give people not just a rosy colored view of what’s ahead, because as I mentioned, there are certain things that may not recover, but that many will. And I think when people understand that and they have realistic expectations about what the future holds, it’s just easier to kind of make your way through that recovery.  
Rick Bangs:So I’m guessing that part of the discussion you personally would have, has to do with setting expectations. And I think you did a nice job and answer to this question, talking about setting the expectations and the light at the end of the tunnel. But also recognizing that there’s no shame in having this conversation, and there’s also professional help, whether it’s individuals or medications that can support this, support patients in working on this particular category.  
Dr. Bochner:Absolutely no question. And I think that the more we recognize the impact that things like mental health can have on a patient’s ability to just overall recover is really important, because what that can do is provide us an opportunity then to recognize those needs prior to surgery, and be able to provide that support after surgery so that ultimately people can achieve the highest quality of life once they’re done with their operation.  
Rick Bangs:For patients who don’t know how to start this conversation, do you have any suggestions? Hopefully some of them are listening here and they’ve got some good ideas, but do you have any kind of general guidance on what they can do to start the conversation?  
Dr. Bochner:I think that there’s so much that’s kind of happening when this diagnosis is made, so many things that are running through people’s minds. I think the first thing is to try and establish your support system early, and whether that’s friends or family, it’s important to bring them along to your appointment. I think it’s really important to have an extra set or a couple of extra set of ears, people there to kind of help you remember to ask the questions that you found were important. Think about what it is that’s important to you and write them down, have a list, come in to your doctor with a list of things and don’t feel bad about going through that list. That’s what we’re there for. Don’t feel embarrassed about bringing up what you’re worried about. It’s okay to say, doctor, I’m just worried that I’m not going to be going to be the same person, that I’m not going to be able to get back to whatever it is that you feel is important. And it’s important to have that conversation.  
 And if you’re suffering from anxiety, and stress or some depression, it’s important to bring that up as well so that that can be addressed and support systems can be put into place, whether it’s, again, your core group of family or friends, or whether it’s professional help. Ultimately, I think that your doctors want the same thing that you do. They want you to recover and go on to be the best version of yourself after your surgery. And you should never feel ashamed to bring these conversations up. And if you find that you’re just having difficulty getting information or having these conversations with your doctor, that’s when you may want to of reconsider getting another opinion, having that discussion with somebody else. And that’s okay. It’s important that you feel comfortable with the people that you’re going to entrust your life and your future with.  
Rick Bangs:Okay. So two final quick questions. So I want to talk about where this research takes us. Where do we go from here? First question is doctors and nurses, where does this take them?  
Dr. Bochner:So I think that’s one of the big important takeaways from the study is that we now have, I think, added information that people who are interested in moving ahead with surgery, patients for instance, can now look at this data and say, wow, okay. This is a really big group of people that had surgery and they can look and try to find the areas, the domains that they’re most interested in and kind of track it out. And I hope that will give them a reasonable expectation about what’s ahead, and it may help them be able to take that big step forward to make the decision to have surgery if that’s what’s deemed to be the most appropriate care from a doctor’s and nurse’s standpoint. This is also now I think really important information to be able to help guide the conversations, to be able to talk about the domains in which we see recovery, as well as the domains in which we don’t see that same return to baseline, again, so people understand what’s ahead, expectations are set appropriately.  
Rick Bangs:Yeah, I think that’s critical. So now let’s flip it and talk from a patient and caregiver point of view. So where does this research take them? And let’s include an advocacy group like BCAN.  
Dr. Bochner:So here’s where I think it gets really exciting. And that’s because this is just the beginning for us. This was just the collection phase to be able to get all this information, reporting this out obviously plays an important role for a variety of reasons that we’ve gone through. But for us, this is just the start. What we would now like to see is how we can use this information, recognize how different the responses are and understand how different people are when they’re coming into this whole process. Is there a way in which we can now develop a more personalized tool?  
 Is there a way that we could perhaps use a series of baseline questions, and based on who you are, your age, your sex, where you are in life, are you working? Are you not working? Do you have a partner or not? What your major concerns are that you voice to us, that the next set of questions may not necessarily be the same for everybody, where we can begin to start personalizing the approach to what it is that you as an individual feel is driving your quality of life. And that doesn’t necessarily exist right now for this particular procedure, but there’s a lot of really wonderfully smart people, brilliant people who are involved in patient reported outcomes research that we’re working with. And we’re happy to partner with others as well to begin to start exploring whether these kind of individualized approaches to quality of life can be done. Just like we talk about individualizing treatment for a patient and their specific tumor, maybe there’s a way to do this, a similar approach with respect to quality of life.  
Rick Bangs:So these are exciting times. We’ve got a lot of possibilities as a result of this, which is just fabulous. So Dr. Bochner:, I want to thank you for your time today, and giving us a better understanding of quality of life after a radical cystectomy for patients who choose both neobladders and ileal conduit, and how to talk to doctors to get more information about this.  
Dr. Bochner:Rick, thank you. And thank BCAN again for emphasizing this. We really look forward to being able to come back and present some updated information to you in the future.  
Rick Bangs:I’d love that. Okay. So in case people wanted to get in touch with you, could you share your email or a Twitter handle or some other information that you would be willing to share with people?  
Dr. Bochner:Sure. My Twitter handle is bbmdmskcc.  
Rick Bangs:Excellent. Just a reminder. If you’d like 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 for part two of my conversation with Dr. Bernie Bochner about the Memorial Sloan Kettering quality of life’s survey of bladder cancer patients who have undergone a radical cystectomy.  
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