Webinar: Defining Your Goals—Making Shared Decisions in Surgical Bladder Cancer Treatment

April 21, 2025

When facing bladder cancer treatment surgery, it’s important that your medical team understands what matters most to you—your lifestyle, priorities, and long-term goals. In this webinar, Dr. Kevin G. Chan, a leading urologic oncologist, along with nurse Kathleen Manuel, BSN, RN, discuss key questions to ask, real-world patient examples, and how different treatment choices fit different lifestyles. If you are facing radical cystectomy and considering your choices, this session will empower you to take an active role in shaping your care.

Year: 2025

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Defining Your Goals—Making Shared Decisions in Surgical Bladder Cancer Treatment. Part 1

Transcript (PDF)

Defining Your Goals—Making Shared Decisions in Surgical Bladder Cancer Treatment. Part 2

Transcript (PDF)

Defining Your Goals—Making Shared Decisions in Surgical Bladder Cancer Treatment. Part 3

Transcript (PDF)

Defining Your Goals—Making Shared Decisions in Surgical Bladder Cancer Treatment. Part 4

Transcript (PDF)

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Full Transcript on Defining Your Goals—Making Shared Decisions in Surgical Bladder Cancer Treatment. Part 1

Patricia Rios:

When facing bladder cancer treatment decisions, it’s important that your medical team understands what matters most to you. This is especially important when you’re deciding on a urinary diversion that will be created during your bladder removal surgery, known as radical cystectomy.

During this webinar, Dr. Kevin Chan, a leading urologic oncologist, along with wound and ostomy nurse, Kathy Manuel from City of Hope Cancer Center in California, will discuss the role of radical cystectomy in the treatment of bladder cancer, will provide key questions to ask your healthcare team, and also what factors should be considered when facing radical cystectomy.

So if you’re facing radical cystectomy and considering your choices, this session will empower you to take an active role in shaping your care. I will now hand over the screen to Dr. Chan and Ms. Kathy Manuel for their presentation.

Dr. Kevin Chan:

Okay. So, hi, I’m Kevin Chan. I’m a urologist at City of Hope specializing in reconstructive surgery for bladder cancer, and I’m accompanied by Kathy Manuel. She’s our nurse coordinator. Whenever anybody gets diagnosed with bladder cancer, the patients will meet with me as well as with Kathy. Usually we spend about an hour each with each patient. I now realize we’ve been doing this 19 years together, so we definitely know each other’s tendencies.

I think more importantly it’s nice to have some consensus when we’re making recommendations. I might say, “Hey, I think this patient is great for an Indiana pouch.” Then Kathy will say, oh, we talked more, and she may be better for an ileal conduit. It’s really nice to have multiple people in the decision-making.

Today really I want to spend this time talking about just important considerations in guiding your decision when your urologist recommends bladder removal surgery or radical cystectomy.

So we’ll first talk a little bit about bladder cancer just to give you some context. We’ll talk about the role of radical cystectomy in the treatment of bladder cancer. We’ll spend most of our time talking about the reconstruction options and the pros and cons of each one. Then finally, we’ll talk about important factors to think about as you make your decision.

Bladder cancer is pretty common. It happens in men to women, two to one. So very common in men, and it’s actually the fourth most common cancer in men, the sixth most common cause of cancer death in men. So it’s a pretty common cancer and it can be pretty dangerous if not caught early.

In 2025, there will be about 85,000 new cases. Like we talked about, it occurs in men two to one, and the main risk factors are smoking, chemical exposures. The mean age of diagnosis is 73, and the typical presentation is painless blood in the urine.

So whenever anybody gets diagnosed with bladder cancer, probably the two most important things you want to know are grade and stage. Grade is a microscopic description of the cancer. If you think of bladder cancer as the uncontrolled growth of bladder lining cells, there’s normal but if something’s growing very quickly, the cells look very immature.

When they’re very immature and almost unrecognizable because they’re growing so quickly, that’s a high grade bladder cancer. Microscopically sometimes they look a little more like bladder cancer lining cells, and so that would be a low-grade bladder cancer, and that’s a slow-growing cancer. The low-grade cancers do not tend to spread or metastasize, but high-grade bladder cancers are the ones we worry about that can spread. Microscopically they can tell the difference between high-grade and low-grade.

When we’re dealing with high-grade disease, the second part of that equation is stage. Where have we caught it at this particular point in time?

So with staging, we do a CT scan of the chest, abdomen, pelvis that lets us know that the lungs, the liver, the lymph nodes are clear of disease, but also in that staging information is the depth of invasion on the biopsy that was done.

That critical metric is the presence or absence of muscle invasion. About 75% of patients will present with non-muscle invasive disease or earlier stage disease, that’s T1 or less. About 25% of patients will present with muscle invasive disease or higher, so that’s T2 or higher.

So for non-muscle invasive bladder cancer, that can be treated relatively minimally invasively. That’s the resection with the scope. Then medicine in the bladder, that’s either BCG, which is the tuberculosis vaccine that we put into the bladder using a catheter. We’ll do that once a week for about six weeks. Or we can actually put chemotherapy through a catheter into the bladder, and we do that once a week for six weeks as well. Both of them can be very effective at taking care of this.

When we’re talking about muscle invasive bladder cancer, typically the gold standard is bladder removal, plus or minus chemotherapy before surgery. There is some select patients if they have an isolated tumor or if they’re not a good surgical candidate, radiation therapy with chemotherapy can also be a potential option.

For the focus of this talk, we’re going to be talking about radical cystectomy. In men, this is the surgical removal of the bladder, the prostate, the lymph nodes. In women, this is the surgical removal of the bladder, the uterus, the ovaries and a very small part of the vagina as well as the pelvic lymph nodes.

So the indications to remove a bladder are for muscle invasive disease or for earlier stage, high grade T1 or carcinoma in situ that’s not responsive to therapies like BCG or intravesical chemotherapy. Every once in a while there are cancers that are earlier stage that we just cannot endoscopically control. So these are the typical people that will ultimately require radical cystectomy.

So as we mentioned earlier, about 25% of patients with bladder cancer will ultimately undergo bladder removal surgery. What’s important to know is that about 75% of these patients will be cured of their disease. So we expect to cure you of your disease, and that’s why quality of life is so important. You’ve got 20 years ahead of you, and we want to make sure you’re able to enjoy your life and do the things you want.

When we remove a bladder, we have to give you another way to urinate. This other reconstruction option is called a urinary diversion. Urinary diversions are grouped into two categories. One is a continent diversion, meaning you have control of the urination. One is to the original plumbing, and that’s an orthotopic diversion or a neo-bladder. Or to the skin, and that’s a continent cutaneous urinary diversion. The popular one is the Indiana pouch.

Then there’s an incontinent diversion, and it’s almost a misnomer. It’s a controlled incontinence. You have urine coming out of a stoma continuously, so they describe it as incontinent, but it’s controlled with a bag obviously. You can uncap and empty that bag every four hours. It’s a controlled incontinence. We’ll talk about each of these.

Dr. Kevin Chan:

The ileal conduit is the simple option. It uses a short segment of intestine and we hook the kidneys into one end and we make a stoma at the other end. That stoma requires an external bag that sticks to your abdomen with skin adhesive like a band-aid.

So when we talk about the ileal conduit, I always say quality of life equates to predictability. Meaning if you empty that bag, you know you’re good for four hours. You can be at dinner with family or friends, you could be at the grocery store, you can be in a wedding. You have a way of managing this urine without stressing about having an accident or knowing what to do or some unpredictable event. So I would say honestly, that’s the biggest benefit of an ileal conduit is that it’s predictable.

We talk about some mild activity limitations. Kathy and I have a patient that rides a road bike 25 miles a day with his external bag. We have another gentleman who hit a hole in one golfing nine months after his surgery with his external bag. So honestly, I think the activity restrictions are pretty limited. I think you can pretty much do anything you want, and there’s ways to make that happen.

So the advantages of an ileal conduit are it is a shorter operative time, I’d say, versus the others by usually about, I’d say two hours. There’s a little shorter recovery, and that’s because urine’s going straight into the bag. It’s not getting reabsorbed by the intestine. There’s less complications just simply because there’s just less steps involved. So it’s a much more straightforward surgery. With this reconstruction or this urinary diversion, we can use it in patients without great kidney function. So if somebody has problems with their kidneys, this is usually the best option for them.

The potential downsides is obviously the mental hurdle of accepting that there’s a bag on your abdomen draining urine. Honestly, as I tell patients, the majority of the time most of us walk around with a shirt on. I think it’s a small mental hurdle, but in the big scheme of things, it doesn’t really make a big difference in your quality of life per se. We talked about really some just mild activity limitations.

Then there’s the neobladder. We perform a Studer neobladder, but there’s a number of different kinds of neobladders that are performed. The concept is the same. We use about two feet of intestine. We create a spherical reservoir. For the Studer there’s a little chimney that we hook the kidneys in and we hook this spherical reservoir to the urethra so you can pee through the penis or the vagina again. So it sounds great and it often works incredibly well.

Urination is not exactly normal. Remember that this is a piece of intestine, so it doesn’t have the ability to push urine out like you normally would. You’d actually have to strain almost like a bowel movement to empty the bladder. Like I said, there’s no sensation. So you urinate more on the schedule.

Every once in a while patients say they do have some sensation or some physical cue that their bladder is full, but we essentially have patients urinate essentially on a clock just to make sure they don’t get too full. It can take up to a year to regain somebody’s urinary control.

Probably the most important things patients want to know with an neobladder is continence. What are the chances I’m going to have to wear a diaper? I’d say overall the numbers range, but my general number is I think it’s about 75% chance you will not need a diaper in men and women. Really, if you’re urinating on the schedule in the daytime, usually it’s not a problem. The last to come back is the nighttime control, and that’s because you have no sensation. So if you’re sound asleep and your bladder gets too full, it’s just going to start leaking and you have no warnings to tell you that. So what we tell patients is we try to set an alarm once or twice in the middle of the night, and if we can do that, if we can empty it before it gets too full, generally we have good nighttime control as well.

There’s also something called hypercontinence. This is a weird concept where there’s no physical blockage, but patients just simply cannot urinate. They push and strain as hard as they can and no urine comes out. We can scope them, we can put a catheter in, but for whatever reason, they can’t urinate. It’s almost like it’s kinked. In men, this is very uncommon. It’s about 2% to 4%, but in women it happens about 50% of the time.

This is obviously something to consider as we think about this option. I will say though that these patients with hypercontinence in general do pretty well because if you think about it, at least they’re continent. They’re not wearing diapers. They have a predictable way of managing the urination. They have an extra step to urinate.

For some people, this is not a big deal. So they’d say, “Hey, you know what? I’m okay with taking this chance.” I think in men, it happens so rarely. I think it’s something that you have to be willing to do, but it’s not common. In women, it’s a definite possibility.

So with the neobladder, the advantage is obviously the improved cosmesis and there’s no activity restrictions. The downsides are there’s a little longer operative time by about two hours, a little longer recovery, and that’s because you have a live piece of intestine that’s holding urine for four hours. So it’s going to reabsorb a lot of those toxins and metabolites your kidneys are trying to get rid of.

The way that manifests to you as a patient is that your energy level, your appetite does this up and down for a good two to three months after the surgery until your body really makes those adjustments and goes, okay, I get it. Your kidneys are working double time and figuring things out and making those adjustments.

Then there’s a little higher complication rate. I say that just because there’s just more steps involved in doing a neobladder, so there’s a few more things that can go wrong. We talked about the risk of incontinence as well as the risk of hypercontinence.

So I’d say one of the easy factors in selecting neobladder is age. When you’re in your 60s or younger, I think it’s a pretty straightforward answer to say we can definitely do a neobladder. I think those patients do great. When you’re in your 80s, we tend to try to go a little simpler, minimize complications and try to get patients back to the life as quickly as possible, maybe with a little less fancy reconstruction.

When we get into your 70s, it’s a gray area, and that’s where performance status plays a role. Performance status is a metric that says, how independent is this patient? Are they able to do all the activities of daily living on their own or do they require a caregiver? What goes into that is your activity level, are you super active and independent kind of thing.

So if you’re a 75-year-old that’s very active and independent, you probably gravitate towards wanting the neobladder. If you’re more sedentary, have a lot of medical problems, maybe you want to go a little simpler with a conduit. Then I always worry about memory and manual dexterity in the event that somebody needs to catheterize.

So who should get a neobladder? I think definitely the active, healthy man. That’s because even in the event of incontinence, we can put an artificial sphincter in and fix the leakage. So there’s no situation where we can’t fix. So I think for men, either they do quite well from a continence standpoint, but if not, we can fix it with an artificial sphincter.

Then in the select active healthy woman, I might recommend a neobladder, but there is a caveat to this. 50% of women will have to catheterize themselves every four hours to urinate. This is their urethra. So that’s something that I’d say most 70-year-olds and 60-year-olds may not want to do. So that plays a role and maybe there’s a better option for this group.

I also worry about the 30% of women that can develop incontinence that’s bothersome because it’s very hard to surgically correct. If I do a sling for incontinence in a neobladder, remember this bladder has no ability to push urine out, so then they will become hypercontinent.

So it’s either making patients hypercontinent to fix the problem or converting them to an Indiana pouch, which I’ll talk about in a second. So it does have to be that select woman that understands there’s a little more uncertainty with the neobladder, but I definitely think the neobladder is appropriate in some women.

I did a neobladder in a 40-year-old woman who was still dating and for natural reasons, she just wanted to be as quote, unquote, normal, if you will. So she got a neobladder and she actually was hypercontinent. So she’s perfectly continent, doesn’t wear diapers, does have to catheterize herself to urinate, but is hiking, works as a mail carrier, is back to her normal life. So for the right person, it can be the right option in women, but it’s a little more complicated when deciding which women should have that.

So then there’s the third option, the continent-cutaneous urinary diversion. The one we do is called an Indiana pouch. There’s a number of pouches out there, the Penn pouch, Florida pouch, the Miami pouch. These are all variations of a similar concept. There’s an intestinal pouch made out of intestine that’s on the inside and there’s a catheterizable channel made out of intestine to the skin and you catheterize that opening on the skin every four hours to urinate.

So this is the Indiana pouch. We essentially use the colon here as the reservoir. We make it a spherical reservoir, and that little segment of ileum that’s going in becomes the catheterizable channel. There’s actually a valve between your small and large intestine that will work as the continence mechanism, but we taper that channel down to make it a catheterizable stoma.

So this is what it looks like. There’s a little, I always say there’s like a second belly button on your abdomen, but we can do it to the belly button every once in a while if somebody really wants. You cover it with a band-aid, you put that catheter in there every four hours, empty it, throw the catheter away, and you go about your business. The continence rates are pretty high and reliable in the 87 to 100% range.

Kathy and I have a patient who runs competitive 10K races with one of these pouches. We have another patient, she teaches 14 bootcamp classes a week with an Indiana pouch. So you can be as active as you want to be. There’s just a band-aid covering this spot.

So the advantages similar to a neobladder, improved cosmesis and no activity limitations. Again, the downsides are similar to a neobladder, a little longer operative time, a little longer recovery, and a little higher complication rate.

So with the Indiana pouch, the special considerations are really memory issues and manual dexterity. For the Indiana pouch, patients really need to be able to catheterize themselves religiously. They need to be super reliable ideally, and most of the time they really have to be pretty independent. If somebody already needs to be cared for by somebody else, even if this is your spouse, the last thing we want to do is have a spouse need to catheterize you every four hours.

In fact, for a caretaker, it’s much easier for somebody to empty a bag every four hours and change the bag every couple of days than it is to find a caregiver, whether that’s family or not, to catheterize somebody every four hours to urinate. So that’s something kind of a special consideration as you get older, a consideration in older patients for an Indiana pouch.

Then similar to a neobladder, the factors in selecting Indiana pouch, age. Again, when you’re in your 60s or younger, this is a pretty straightforward, great option for the healthy active woman. However, as we get into your 80s, maybe the thought of having to catheterize every four hours is a little more work than most 80-year-old patients will want to put up with.

Then when you’re in your 70s, it really comes down to performance status. How independent, how able are you to take care of yourself and be able to catheterize yourself on a regular basis and be able to build it into your routine? Obviously we talked about memory and manual dexterity because you just have to be super reliable or this can be life-threatening if you forget to catheterize.

So who should get an Indiana pouch? At City of Hope really it’s my first choice for the active, healthy woman because you get what you think you’re going to get. You’re going to get a pouch that you catheterize every four hours, but you’re not going to need to catheterize your urethra. You have an easy spot that you can see and catheterize.

We don’t have that risk of incontinence that’s going to require another major surgery. We don’t have the risk of hypercontinence and catheterizing the urethra, which is a little more challenging than catheterizing the stoma that you can see on your abdomen.

Then the other group of patients that this is good for is that the man that’s maybe had previous treatment for prostate cancer or rectal cancer. Maybe has had previous radiation or maybe previous surgery for BPH that might make the risk of incontinence a little higher. So the Indiana pouch can be used for a number of patients that just simply want to avoid an external bag.

Dr. Kevin Chan:

Whenever we talk about this, there’s a lot of variations of this analogy, but I use the Mercedes versus the Honda analogy, where the neobladder in the Indian pouch is the Mercedes and the ileal conduit is a Honda. I think people understand this. I think everybody knows a Honda is super reliable, will get you to where you need to go. They last forever, not a problem. The Mercedes is probably a little more fun to drive, a little fancier, some more bells and whistles, but maybe a little more expense.

Ultimately that expense with the Mercedes is the longer anesthesia time, the higher complication rate, and the longer recovery. I think when you see this analogy, if you’re that 60-year-old guy, he’s going to say, I want life just like I had it yesterday, and that would be the Mercedes. I think patients almost know. When you’re in your 80s, most of the patients go, “Absolutely, I know I want the Honda.”

I think for patients in their 70s, this analogy is the most helpful. It’s like the healthy 70-year-old that’s still working out and playing pickleball and those kinds of things, they’re going to want the Mercedes. The patient that’s maybe sedentary, maybe has a bad heart, bad lungs, and is at home most of the time, they’re going to know, “Hey, you know what? I should probably have the Honda.” I think this analogy honestly, I think helps patients put it into a little better perspective.

Then finally, usually at the end, this is probably the most important question. I always ask patients, describe an amazing weekend. I want to know what brings you joy. I want to know what makes you tick, what gives you your life. It’s my expectation that we will get you back to life as you know it, and you’ll be doing the things that you care about.

So we need to figure out if the options you’re considering align with these treatment goals and these ideals that you have after the surgery. I think that’s the most important point of this discussion, is trying to find an option that’s going to allow you to do all those things you want to do. We absolutely expect to cure you of your disease, so we need to make sure you’re happy because we’re going to be seeing you every year for the rest of your life.

Something that I think is super important as you’re coming to this decision, not only using your doctor and your nurse coordinator as a resource, but I think talking to patients that had one of the options that you’re considering can be incredibly valuable. I think it really shows you the light at the end of the tunnel. It helps you envision how your life would be like if you chose this particular option versus another.

Part of the problem is that there’s a choice at all. Sometimes people feel like they can make a wrong decision, but I really would say, I suspect there’s probably multiple right decisions. I really feel like anybody could live with a conduit and really enjoy their lives. That being said, I think when you’re young and healthy, I think we can get fancier and do even better and give you an even better quality of life most of the time.

So that’s what I have. I’d love to open it up to questions.

This patient, by the way, had an Indiana pouch. He was super happy and did really great with his Indiana pouch.

Patricia Rios:

Dr. Chan, just want to thank you for a very comprehensive presentation. I really loved your example about a Honda and Mercedes, and I think that helped to really understand the difference. I also appreciated that you talked and stressed the importance of talking to a patient who has had one of these diversions, and I just wanted to take a moment to share that at BCAN, we have a program, a peer-to-peer program called Survivor to Survivor, and we’ll put the link in the chat, where we are able to pair patients that are looking to have a cystectomy with another patient so they can really understand what life is with one of those radical cystectomies. So thank you for mentioning that.

I want to begin with a few questions that we have as it relates to the different diversions. Out of the three that you mentioned, which one would you say is the one that’s most commonly done and least commonly done?

Dr. Kevin Chan:

Yeah, interestingly, 97, sorry, 93% of patients in the United States that get radical cystectomy get the external bag, the ileal conduit. So it’s probably the most common. I think that’s a product of a couple things, but probably it’s the simplest operation. So if you don’t do a lot of these operations, don’t do a lot of neobladders or neo pouches, you generally steer away from them. So I’d say that probably is the reason it’s so common.

What’s interesting is the neobladder has been around since 1982. So it’s been, I mean, almost 50 years we’ve had it, and we’ve made very, very slight inroads. At City of Hope, I’d say about 50% of our patients get ileal conduits and 50% get other things. There are some institutions where even more than that, where they really push neobladders even harder than us. I say we press pretty hard. We really try to avoid an external bag if at all possible.

It is technically a little harder. Like surgery, if you just don’t do it a lot, you may just… In certain people’s hands, obviously it’s probably better to do a conduit. If that’s all they do, then that’s the right thing to have. I think in a lot of major cities, I think there are people that do all three options, and if that’s something that’s important to you, then I would try to explore that option.

Patricia Rios:

Great. Thank you for explaining that. You talked about the pros and cons or rather, who will be the ideal candidate for a particular cystectomy? This question just came in from Lisa in that let’s say you start with an Indiana pouch. It could be a neobladder. The idea is that you started with a Mercedes and now you want to switch to a conduit in your mid 80s because of many reasons. Can you explain what would be some of the reasons and what do you do if things change?

Dr. Kevin Chan:

So it’s interesting. Kathy and I have been doing this for 20 years now. Now we’re getting those patients that are getting older and having some memory issues, but you’ve lived with it for 20 years fine, and now you’re getting to that point in your life where it’s become dangerous.

I think sadly, that’s a very important point that Lisa brings up. At 65, yes, Indiana pouch makes the most sense. In your mid 80s, you would love to convert it to a conduit. Honestly, as we’ve unfortunately learned is when your memory goes, your health isn’t great either. So to convert that, that’s still a major operation.

It’s actually easier to convert a conduit to an Indiana pouch than it is to convert the Indiana pouch to a conduit because I actually have to just remove the entire Indiana pouch and start from scratch to create the ileal conduit. I feel that that’s a really big operation to put somebody in their mid 80s through.

So in general, and this is a question that comes up with my trainees as well, it’s like, well, everybody’s going to get to this point, should we be doing Indiana pouches? It’s one of those things where it is 20 years, 15 years of enjoying your life. I don’t know that you can avoid something just because something might happen 15 years from now or 20 years from now. That’s why I do think when you’re in your 70s, it really does make sense to say, hey, does this make sense? How important is it for you not to have an external bag? I think that’s a great question. It’s a hard answer.

Usually when patients get older and need to be cared for and have an Indiana pouch and maybe their memory is not working, what we simply do is leave a catheter in their Indiana pouch and it’ll go to a drainage bag. That’s usually the simplest than going through a big operation. The problem with that is it actually still needs to be irrigated because the pouch makes mucus. So there’s still a little bit of maintenance, even if you just wanted to leave a catheter in the pouch, probably needs to be flushed or can get clogged with mucus.

So I’d say when you get older into that timeframe and the memory starts to go, it’s like there’s a lot of things that are not ideal. I think it definitely more for the caretaker. I don’t think there’s an easy answer because it’s a big operation to put someone through at 85 to just convert the pouch.

I will say in that same vein though, there are many people that might get an ileal conduit and they’re 65 and they’re like, you know what? I really don’t want to have this bag for the rest of my life. We see this with colorectal patients and cervical cancer patients where it was a little unexpected, so they get a conduit, but we can convert that to an Indiana pouch. Relatively, it’s not as big of surgery as a radical cystectomy.

So I think that’s also a reasonable option. We can convert it to an Indiana. It’s very hard to convert it to a neobladder because that urethra has been scarred down. I worry about the reliability of continence. So I don’t usually convert it to a neobladder, but I can convert it to an Indiana pouch if somebody really doesn’t want a bag.

Patricia Rios:

Thank you. Dr. Chan. Great question, Lisa. Kathy, this question is for you. Many of our support groups, or even speaking with patients, the topic of ostomy supply comes up often. As a matter of fact, I think from one of our participants, one of the questions that this person submitted in advance was the retirement homes and their ability to deal with ostomies. Any thoughts around that?

Kathleen Manuel, RN:

Yeah, that’s a big issue. We also have that issue when our patients go to a skilled nursing facility or even home health. They often don’t get supplies routinely. So we have to intervene. I would say when they leave the hospital, make sure that they have a one to two week of supplies with them that they can use. We see our patients fairly often, follow up clinic visits postoperatively, so we can give them some product when they come back to see us.

Ongoing, if they’re in a skilled nursing and most home health’s are mandated to supply those ostomy supplies or catheters, whatever they’re using. So you just really have to get in touch with a case manager from the hospital and, or facility and really just be on them to get those supplies ordered and available for them. It’s hard to get it done.

Patricia Rios:

Similar to that, I think a question that came up is can you pre-order supplies if you’re going to travel for a while, or is that limited to a insurance company? Can you provide some insight around that?

Kathleen Manuel, RN:

Yeah, some of the insurance companies will allow you to order 90 day supply at a time, so that can help. I have had patients who have mentioned to their insurance company that they are traveling and have gotten away with getting more supplies.

Patricia Rios:

Good to know. So there’s a question about the right bag supplies. How do you find the right bag supplies? What does that mean?

Kathleen Manuel, RN:

So when you’re in the hospital having your diversion, and if you have an ileal conduit and, or any of the diversions, you may need supplies. If there’s a wound ostomy nurse that works at the hospital, those nurses will help with your care, be assigned to your care and find the right product. Everybody’s a little different and everybody needs different supplies. So it’s helpful if there’s a wound ostomy nurse at the facility or someone at least that knows the different product lines so that they can help the patients.

It may change over time. We may have to change it in a couple months. The stoma gets smaller over six weeks. So we’re constantly measuring, looking, looking at body. If you gain weight, you may have to have changes. Lose weight, you might have to have changes. So just need somebody to constantly follow up with. It could be a wound ostomy nurse through a home health agency or out in the community or in a facility like ours.

Dr. Kevin Chan:

Yeah, I would add, Kathy, actually on every follow-up visit I see with my patients, Kathy, they almost are more excited to see Kathy than me. She’ll come in, take a look at their stoma and really problem solve if there’s issues. Just think about it this way, if you have a problem, there’s probably thousands of people that have had that same problem.

That’s where people like Kathy can be so helpful at problem solving it. Never think that this is the first time this has happened. Any problem you’re experiencing, there’s probably a solution. That’s where our ….therapists are so helpful and Kathy is so helpful.

Kathleen Manuel, RN:

The other resource too are the main ostomy pouch companies. Coloplast, for example, or Hollister, they have ostomy nurses on staff. You can call those companies directly and they will ask you a few questions and then they will suggest product and then they can send it to your home. So that’s another resource too.

Patricia Rios:

Thanks for sharing that tip, because I think that often comes up. I think Dr. Chan is very fortunate to have you, Kathy. Some patients don’t have a Kathy with easy access, so where can they turn? So the resources that you mentioned I think are excellent. Are there any others that we should be aware of?

Kathleen Manuel, RN:

United Ostomy Association of America has a list of all the wound ostomy nurses, I believe, or a number of them and the cities where they live, and some can be called to assist. I think that that would be the next place I would call, but I would first probably call straight to the company. They’re Coloplast, Hollister, Convatec, whatever company they’re using.

Patricia Rios:

Great, thank you. Last question related to that, is a patient able to switch suppliers for their ostomy bags?

Kathleen Manuel, RN:

Yes, they can. It is a little bit dependent on insurance companies and what insurance patients have, but for the most part, they do have options.

Patricia Rios:

Great. Thanks for answering that. Dr. Chan, so if you’re using a section of intestine, does the patient have dietary restrictions or require specific nutrition monitoring because they have less of an intestine for absorption and the process of digestion?

Dr. Kevin Chan:

Yeah, that’s a good question. So this is a pretty well-studied question in terms of metabolic changes. We use the distal ileum that seems to have the least amount of metabolic consequences. So it shouldn’t change bowel habits. People may have heard of short-cut syndrome where people get diarrhea because they don’t have enough time to reabsorb the water. We can safely use up to three feet of small intestine without having that problem.

So in general, there aren’t significant bowel changes. Even when we use the ileocecal valve, which is that junction between the large and small intestine between liquid and formed stool that we use for the Indiana pouch, even they have pretty formed bowel movements. This segment of intestine historically is thought to be where B-12 is absorbed.

So some people can get this special kind of pernicious anemia from B-12, lack of B-12 absorption. So we will check B-12 levels periodically in their routine labs just to make sure they don’t develop this. Honestly, I would say this is pretty rare. In general, there’s no dietary restrictions. Honestly, I don’t think really huge changes in their bowel habits. I think they’ll typically get back to normal.

Patricia Rios:

Okay. Thanks for that. Now I want to switch gears a little bit to the concept of shared decision making. I think that was one of the themes of the presentation. Thank you for highlighting all the things that patients should consider and also highlighting what the ideal candidate would be for the different types of reconstructions.

So could we start with, and I would love to hear both of your thoughts on how do you define shared decision-making, particularly as it relates to bladder cancer treatment? What are those key components that make a true shared decision-making?

Dr. Kevin Chan:

Right. I always like to bring up this story. When I first started, I used to just present the three options, and a patient said to me, “If you’re the doctor, shouldn’t you be telling me what to do?” It’s interesting, there definitely is an element where I think that’s important and quote, unquote, that’s not shared decision-making.

I think where the shared decision-making comes in is I always tell patients, “Listen, I’m here. I spend an hour with you because I want to know about you. I need to learn what makes you happy.” That’s really what needs to be shared is, “Hey, you have a role in this decision-making based on a lot of things.”

Ultimately there is more than one right option for patients. So they are an incredibly important part of that decision making. It’s not just me saying, “This is what you get.” That’s why I consider it shared decision-making is that they have a critical voice in things that we recommend, but also they get to make the final decision. I don’t know. What do you think, Kathleen?

Kathleen Manuel, RN:

Yeah, I then meet with them for an hour, and I usually follow Dr. Chan. I start by just going over if they made a decision with Dr. Chan and do they understand that decision because it’s a lot to take in. There’s a lot of information given to them. It’s very helpful to have a family member or friend or somebody with the patient so they can absorb some of this information. It can be very overwhelming.

Honestly, some of them aren’t really clear on the three different diversions. They don’t really understand them. It was just too much. So then I go over them again, show them pictures, show them pouches, show them catheters and just listen to what they’re saying. Then again, like Dr. Chan said, just what does their day to day look like? Try to get to know them.

Do they just want to hang out with their grandkids? Do they want to play the pickleball? Whatever it is, I try to get to know them a little bit better. Then they always ask me, “What would you do?” I tell them, I am not going to tell you what I would do because you’re the one going to be living with it. They want to know that, but I never share.

During that time, we try to come to a decision with what their needs and wants are, but sometimes they don’t decide on that visit, and that’s okay too. They can get in touch with us, Dr. Chan or myself, and let us know if they’ve changed their decision, if they went home and talked to other family members or other ostimates or peers that have diversions. Maybe their minds have changed, and that’s fine too, but the decision is theirs ultimately.

Patricia Rios:

Thank you both for addressing that. You mentioned the caregiver or a loved one, so I was wondering what advice would you give the caregiver and loved one so that they could support their loved one through the decision-making process? Sometimes perhaps the caregiver or loved one may have a different perspective. What advice have you given patients?

Dr. Kevin Chan:

I think this is an interesting question, and I don’t know if I have the answer. I think you nailed it, which is, many times it’s a child and the parent. The parent’s the patient. Quite honestly, when they ask me, as they ask Kathy, they’ll say, “If you were me, what would you do?” Which is a different question of, “If I were your dad, what would you do?”

Which it’s a very different question, because me as a child, I don’t care about my dad’s quality of life. I just want to see him there every day. I want to have conversations with him. Honestly, I am not even thinking about him having a bag. As a child I’d say, “I just want the safest thing possible. You’re going to get the bag.”

If you are the patient, you may say, “You know what? I don’t think I want the bag. I’d rather have this.” So that’s where I think there can be a discrepancy with that loved one and not… I think most family members, honestly, it’s pretty intuitive to be pretty nurturing to their decision-making.

I think when the patient’s pretty healthy and active, I think the kids really and the family members defer to the patient and let them make the decision. I think it’s when they’re more frail and have medical problems, they’re like, “Hey, I know you’re thinking about a neobladder, but maybe this isn’t a good decision.”

So I think in general, family members and friends are really honestly the patient’s best advocate. They’re almost the outside observer saying, “Hey, this is probably better.” That’s why it’s so important to have them. Definitely we can sometimes get discrepancies with that group. Kathy?

Kathleen Manuel, RN:

Yeah, agree. I would say too, part of our, in the shared decision-making process is for us to evaluate their family support or their friend’s support. I mean, that is critical in the recovery phase for really all these diversions, but maybe more so in long-term with the pouches, the Indiana pouch. So I think that’s also an important key step. Really I feel like the patients support team is just really looking to do what they want to do, whatever makes them happy.

Patricia Rios:

Thank you for the thoughtful answers and really for spending this hour with us, Dr. Chan and Kathy. I want to make sure that I give enough time for each of you to share what would be your takeaway message from this conversation that you want our listeners to remember as we conclude today’s webinar. We’ll start with, how about you, Kathy?

Kathleen Manuel, RN:

Okay. Well, I think it’s important, again, to have support with you when you’re going to these meetings with the doctors and get all the information. There’s also written information that can be taken home. Really go over that, whether it be that day making a decision or go home and make a decision. Make sure you tell your story, the patient story, what you do during the day, what your goals are. If you play sports, let us know any hobbies you have so that we can help you with those decisions.

Honestly, I think with all these diversions, the life can go on as it did. Ileal conduit, Indiana, neobladder, all the things that you want to do, you can do with those. The big thing with the ileal conduit, everybody asks me, “Can I swim?” Yes, you can swim. You can swim with all these diversions. I really don’t think there’s any limitations on any of them, but it’s important to advocate for yourself and make the decision for yourself. We can help you along the way if you need it.

Patricia Rios:

Dr. Chan?

Dr. Kevin Chan:

Yeah, that’s perfect, Kathy. I would say my big thing is it really is my expectation that we’re going to cure you of this disease. So I want you to put a lot of thought into this reconstruction option to make sure it’s something that’s going to allow you to do all the things you love after surgery. I want to tell patients that you literally will just be seeing me every six months and telling me what you did on vacation. That’s really our expectation is that you’re going to get back to life as you know it.

I know it’s really hard to imagine that when you’re getting all this information, but that’s the message I want patients to know when we finish talking is, listen, you’re going to get back. This is just a short chapter in your life that you’re going to get through, and we’re going to be sure you’re happy with this.

Patricia Rios:

Thank you both for spending again this hour with us and for sharing vital information.