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The Psychosocial Aspect of Bladder Removal Surgery

Webinar with Dr. Michael Diefenback from Northwell Health

You can read the entire Treating Bladder Cancer with Bladder Removal: Managing the Psychosocial Impact of Radical Cystectomy webinar transcript at the bottom of this page.

Year: 2021

Part 1: Adjusting to Bladder Removal

Video (20 min) | Transcript (PDF)

Part 2: Lifestyle, Emotional, and Emotional Aspect of Bladder Removal

Video (30 min) | Transcript (PDF)

Part 3: Caregiver Considerations after Bladder Removal

Video (8 min) | Transcript (PDF)

Part 4: Question and Answer about Psychosocial Adjustments after Bladder Removal

Video (8 min) | Transcript (PDF)

Full Transcript

Stephanie Chisolm: Radical cystectomy is the removal of a bladder to prevent bladder cancer from spreading to other parts of your body. And adjusting to this what we call new normal after a radical cystectomy, can be a real challenge for some people. Yet BCAN knows that most individuals continue to live robust and active lives, even without a bladder. Today we’re delighted to have Dr. Michael Diefenbach PhD from Northwell Health. He is a behavioral scientist, and he’s going to have a conversation with us about some of the common concerns that may arise after bladder removal surgery. Dr. Diefenbach is a professor in the Department of Medicine, Neurology, and Psychiatry at the Donald and Barbara Zucker School of Medicine at Hofstra Northwell. And he’s the head of the Center for Health innovations and outcomes research. Dr. Diefenbach, it’s a pleasure to have you with us. So I’m going to go ahead and turn this over to you, and you may start your presentation.

Dr. Diefenbach: Thank you very much. Thank you very much for the nice introduction, and the invitation to share my experience with the psychosocial issues after bladder cancer. We have developed a program for bladder cancer survivors and their caregivers at Northwell Health that we are currently testing. This is a study that has been funded by the National Cancer Institute. The purpose of this study and our program is to help bladder cancer patients and their caregivers with recovery after bladder removal surgery. Patients and their caregivers face many challenges after their surgery. And these challenges may negatively affect their physical, social, and emotional well being. But it doesn’t need to be that way. This program and this webinar are designed to help you face these challenges, and as Stephanie mentioned, live productive lives and happy lives.

So let’s go about some of those issues. So the talk is divided into two major parts. One is directed at patients. The other one is directed at caregivers. There are many psychosocial issues that I have mentioned here, and that we will be discussing in the hour ahead. And similarly, for a caregivers, there are a number of issues that are pertinent and that many caregivers need help with or might want to have addressed. And these are getting organized or managing medications, talking about cancer, a number of these kinds of things. So let’s move ahead and talk about it.

As you heard last week, there are three different kinds of surgical procedures for a diversion. And the first one is the ileal conduit. And what that means is that you have the bladder has been removed, and there is a stoma that is on your lower abdomen. And after surgery, this stoma might feel, might be small, and there might be some achiness for quite some time. Over time, your stoma will shrink to its permanent size, and it will remain, if it’s healthy, moist and shiny. At the beginning, the stoma may occasionally bleed. So it’s important to be very careful when you’re touching it. And of course, you always want to wash your hands and take care of basic hygiene.

What many patients will receive is that they will have an external bag band that will be attached to that stoma. And there are two different kinds of bags; there’s one piece or two-piece system. On the one-piece system, everything is in one apparatus. And it’s a combined bag with an adhesive section that attaches directly to the skin around the stoma. And this entire section or assembly is removed every time you change your bag, and you change it about every three to five days. The two-piece section is slightly different. You have a piece that is attached around to the stoma, and then the bag is screwed on to it. And you can then, when you fill it, it’s easier to take it off. And so there is no right or wrong way of choosing which one is worse, they work both equally well. And we always tell patients that they should experiment with these appliances and figure out what they’re most comfortable with. And there are ways that you can try them out, and see how they work for you.

Dr. Diefenbach: So the other major component is the Indiana pouch here, as I’m sure you all know is that there is a artificial pouch being reconstructed from a colon tissue it resides inside your body, and there is a small stoma, an exit, that protrudes, and that you can then catheterize to empty it. When you get out of the hospitals, you will see that there are a number of tubes coming out of your abdomen. Often they are combined with the drainage bag. And those tubes help you to prevent strain on the pouch, they facilitate urine flow, and they support the safe healing until you really feel comfortable doing it all yourself. Over time, these tubes will be removed. The surgeon will ask you to come back to the office, and they will lead you through this and teach you throughout the recovery process.

Because the pouch is made out of colon there is the possibility that mucus will be accumulate inside that can create blockages. So you need to make sure that when you’re ready at that point, that you rinse your pouch in regular intervals, and that the catheter is clean, and that everything around the stoma is healthy. So those mucus accumulation can be prevented by rinsing the pouch. And if you cannot drain from a catheter or if the skin around this stoma becomes irritated or red, or if the stoma starts to bleed, then that’s a good time to call a doctor. You might also have access to a visiting nurse. And sometimes those visiting nurses are trained in stoma care. That would be a great resource to call that support system on. When you get out of the hospital but initially you will have a bag, a drainage collection bag that is attached to your legs as you can see on the lower right hand corner. And at the beginning the pouch and the bag needs to be drained very, very frequently. And with time, the pouch starts to become bigger and bigger, and you don’t need to drain it as much.

The third option is the neobladder. Neobladder is fashioned again out of colon tissue. There is no stoma, the usual exit is preserved. And again, when you leave the hospital, there are a number of catheters and tubes and stents that are being placed in your body. And those will all help you to set the neobladder, the bladder that is formed that the surgeon has formed, will properly heal. Remember that the neobladder will not have nerve endings. There will be no feedback when your bladder is full, and you don’t have any voluntary control over the bladder. So you have to learn a new way of voiding urine that is collected in there. At the very beginning, again, the nurses will show you how to properly take care of all of the catheters. Also at the very beginning, careful walk and stand up. Movement is always important because you want to make sure that you don’t develop any blood clots. And then there’s urinating, this new way of urinating is called the Valsalva maneuver. And it is a form of abdominal straining that you can often times are advised to learn and to practice even before surgery so that your muscles are strong. If you can’t, or if you are not successful in voiding, then there is the option that you would have to catheterize yourself or somebody else might need to catheterize you and through the existing exits. And that is what is happening with the neobladder.

So now let’s talk a little bit about things that you need to think about in terms of care and potentially troubleshooting. So for the ileal conduit as I said before, there might be some swelling, redness, or rash around the stoma. These could be signs of infection, especially if there is some pain and redness involved or if there is some fluid coming out of this stoma. As I said before, this is a good time to talk to a healthcare professional. You can also apply some antibacterial ointment around the area. And what is also quite common and normal is that there might be some leaks within the first year or so after the surgery. So what you should think about is that you empty the pouch until it has a regular size and until you know exactly how long it takes to fill up that you just empty it out on a schedule. And that could be as much as every two hours, it could be three to four hours. The intervals will definitely increase.

Dr. Diefenbach: For many people, odors are a common and sensitive issue. There are the pouches have a barrier around it that helps contain odors. But you can also have some control over orders just by what type of foods to eat. And if you drink a lot of water, and this is something that a lot of patients feel is counter intuitive is to say, “Well, if I drink a lot of water then I produce a lot of urine, and then I have to drain it more often, and that’s a hassle,” and all of these kinds of things. Well, drinking a lot and keeping everything flushed really helps. It helps with odor control, it helps with preventing mucus built up. And as long as you drink water or beverages without caffeine, we mentioned here cranberry juice, that is very healthy, and it helps with some of the odor issue, and also with some of the mucus buildup. For the Indiana pouch areas, around the catheter, the Jackson Pratt drain that is on the stent might become irritated right at the beginning. So again, use antibiotic ointment. After you come out that you see a lot of bruising, that’s normal, it will clear over time. And again, moving around is really good for you at that point.

If you have trouble inserting the catheter, there are a couple of tricks. And there are also videos on the internet that you can see. But one of the most important things is that patients who we have talked to is that relax your abdominal muscles. If you are tense, if you’re worried, if you’re anxious about this, you tense up and that’s very counterproductive. With time, you don’t even need to look down anymore. And so that’s also good because then your muscles don’t contract that much. And then take some deep breaths and try to relax. By the way, all of those things that I’m telling you about are culled from many interviews that I and my colleagues have done over the years. And these are things that patients have told us. We have done countless patient interviews, countless focus groups, where we have taken out these pearls of wisdom that patients have told us, and we have them all put together in this presentation and in our program.

So if the catheter is clogged with mucus, then this is really high time to irrigate it with some saline. You also can gently slide the catheter back and forth. And you might also might think, well maybe something doesn’t, it’s not quite right, you might have to take it out and then put it back in again. If you feel that if you drink a lot there is more accumulation of fluid, you have to catheterize yourself more often. Again, it does not hurt. There are no nerve endings in there. So it is just a way of… And you will get… Everybody gets used to it, but it is just a way that is something that you have to learn, and you will become proficient in it. For the neobladder, again, when you come out of the hospital, you have irritated skin, you’re still bruised, there’s swelling around the incision sites. I mean you just went through major, major surgery. So, it is very normal that you feel as if somebody… You come out of a very, very physical hard experience. So again here, drink plenty of water. Irrigate to reduce mucus production and clogging. And frequent leakages are, at the beginning, also common. And once the new bladder establishes its stents a little bit, it will become less and less so, and you will have fewer of those leakages.

So what can you do if this happens especially at the beginning? Well, the best thing is to stock up on rubberized sheets and mattress covers that protect the bed. And while you are sleeping or resting, these things are very, very good. And you can just exchange exchange them as needed. You might also wear absorbent underwear or pants. Depends products are very commonly used. And try to urinate frequently, especially before bed and before travel. And don’t be surprised if there is some urine especially right after surgery in your urine. If there’s some blood in your urine, that’s very common. But if it stays on for quite some while, then that could be a sign of urinary tract infection. So you have to monitor that little bit.

So there are a number of lifestyle changes that you will find. But what I think is helpful that patients have told me is that they experienced fear of cancer recurrence, they might be anxious or depressed. There are oftentimes patients feel that they are discontent with the appearance of their body. They also don’t like that, at least at the beginning, there is limited mobility, and they don’t feel that they can retire more frequently, they cannot walk as fast anymore. And maybe they’re worried that people will notice that their body has changed, and that people might detect that they’re wearing something. These are all valid concerns. And the best way of doing this is that, they’re dealing with them and talking with other people about it. And during those initial weeks caregivers are really, really important.

Dr. Diefenbach: And the caregivers are a great help to the patients. They take lots of new responsibilities, and they also might face have their own challenges to deal with. So most commonly what caregivers are doing is that they’re managing their loved ones medications, they’re driving them to doctor’s appointments, they organized a urinary diversion supplies, they deal with insurance companies, which can be a rabbit hole that you might find in there. And they are the eyes and ears of the medical team. Medical Doctors, the health care providers really rely on oftentimes rely on the reports of the caregivers. And the caregivers also report or document the symptoms are changes in how the patients are doing. And they’re doing all of these things while they’re dealing with their own responsibilities. They might have families, they might have jobs. So we will talk about this a little bit later.

So initially, when you go through major surgery, you might lose some weight. You feel that you had don’t have enough appetite, you might experience some changes in taste and whether you feel whether you’re eating enough. Things might not really work as well for you anymore as they were before. But what is really important is that you have a healthy, well-balanced diet that will help. So that means that right from the hospital when you’re being discharged, you start out with some soft foods and liquids. And as we said, water is very important. And the patient might feel much better when you eat smaller meals and more frequently, rather than three large ones. So if you’re used to have a large breakfast, lunch, and dinner, so then maybe you will feel better if you have smaller and more frequent kinds of meals.

There are a number of digestive issues that are common. So there’s bloating, there could be constipation, there’s diarrhea, and there could be nausea. So some of this could be the after-effects from right after surgery. And those will change and you will recover after that’s over after some time. But there are also foods that you might want to avoid. And those foods are, limit spicy and greasy food. And high fiber foods, they prevent bloating. Limit liquids during mealtime, as they can stretch your stomach and make you feel full, and then you don’t eat enough, because you need to have enough protein and calories to maintain your weight. But again, there is this risk of dehydration and urinary tract infections. So again, drink plenty of water. Don’t drink sugary drinks. But tea, for example, is very nice. And preferably tea that is decaffeinated or herbal tea, mint tea, camomile, and things like that. They really help with diarrhea, constipation, and some of those issues that we’ve talked about before.

A big issue that patients often ask is bathing and hygiene. So you will receive instructions when you come out from the hospital what you will do with all of those tubes and drains and incisions. And most of the time you will need help with bathing and showering. What you can do in preparation, for example, is if you don’t have it already install a shower bar, install a shower bar either in the shower, or when you get into the bathtub try to find a chair or a stool made out of wood that can get wet but doesn’t rust that you can place into the shower. Showers are recommended anyways because it’s very hard to get into bathtub in and out. And you shouldn’t take a bath or so for at least the first month. So even though it can be very comforting to soak in a bath, it’s not good for you at that time. So showers are fine. And this shower bar is really helpful for if you’re showering.

Dr. Diefenbach: If you have a pouching system, you can shower just as you have. There are some types of bags, and you will figure this all out, they are covered with some fabric because it’s nicer to have them on the skin. They might absorb small amounts of water, that’s not a problem. But you can also cover them with some saran wrap or something like that. And then once you’re done with that, you should just change your bag, and then you’re totally done for the day. You can shower if you have an Indiana pouch, you can shower after all of the drains are removed. But again, don’t soak until the incision is healed and you can cover up your stoma with some covering, and then you can just take a shower just as you usually do.

Getting dressed. Well, it’s as I said, a lot of people feel self-conscious about one’s appearance. And body image problems are quite common. Well, we can accommodate this by just wearing more loose fitting clothes are made out of a breathable fabric. At the beginning I would avoid wearing belts or tight clothing. And after you’re fully healed, dress whatever is comfortable. Some of the tips that our patients have given us is that dark colors may conceal better than lighter colors. Patterns will draw attention away from solid cultures, especially from some bulges that you might have when you have a bag hanging on the side. You know wear loose t-shirts or comfortable pants. You can wear light jackets or sweatshirts, pleated trousers also help for men, same for women. So again, you will be able to figure this out. And you can make these changes fairly easily, I would say. And some experimenting will be necessary.

So sleeping is another issue that a lot of patients talk about and are worried about. And especially when you come home at the beginning, it’s can be quite uncomfortable. After 14 days in the hospital, you had a hospital bed, or 10 days you had a hospital bed that was adjustable and all of these things, and now you come home and you are happy that you’re home, when you’re sleeping in your own bed. But then you don’t feel quite as comfortable all of a sudden anymore. Because you still deal with soreness. You have these tubes and drains coming out. So there’s a lot of things that might interfere with sleeping. So lots of pillows help. You can even place a pillow over your stomach to feel comfortable. You might also use a heating pad, especially in the winter. Heating helps a little bit with pain. And that might make you feel more comfortable.

If you have urostomy bag, empty it right before you go to sleep. And there are even some night pouch systems that have longer tubes, and that there are bigger bags. And you place the bag on the floor next to your bed. And the tubes are long enough that they don’t this large when you’re sleeping. If you have an Indiana pouch, you might still have to empty it every three to four hours. So that can lead to disrupted sleep, especially at the beginning. Once it has its regular size and you can go for six hours or so, your sleep quality might improve. And with the neobladder, it’s the same thing, every three to four hours. And again, those plasticized rubberized sheets are really, really helpful here.

Pain management. I know that a lot of patients are really worried about pain. That you are in pain after bladder cancer surgery is very, very common. That doesn’t help you when you’re in pain. But there is pain medication. So you don’t need to suffer from pain. But then there is also the worry that if you use opioids, and they are much more restricted now in case taking them out, is that people have some worries about getting addicted from them. So just use them when it is really, really, really uncomfortable. Monitor your pain and your feelings. Communicate them with your caregiver, communicate them with your medical team. Also write down in a diary, write down on a scale from zero to 10, with 10 being the worst pain imaginable, write down what your pain is. And it’s very helpful for you to also notice that your pain will become less over over time. If you’re worried about addiction to painkillers, definitely talk to your doctor, and especially talk to them if you feel like you want to take the medicine because it makes you feel better, or when you feel like you’re or when your caregiver thinks that you’re losing control over usage. And when you want to take the medicine even weeks after when the pain should be should be gone. So here again, the caregiver has a very important job to do to monitor your medication intake as a patient.

Dr. Diefenbach: I hope it’s common knowledge that you shouldn’t drink alcohol when you’re on opioids or that you shouldn’t combine opioids with sleeping pills. Anti-depressants or anti-histamines, they can really mess you up. And that’s not a good thing. Also if you’ve been on opiates for quite some time, talk to your doctor how to slowly get you off it. Just stopping it from one time to and another is also not very good. So the common example is that once you’re at home so try to facilitate your well being and your physical, your mental and your physical well being, try to stay active, try to exercise, even if it is really really hard and even if it is uncomfortable at the beginning, I urge everybody to start to walk as soon as possible. Start out slow. There is no rush. Nobody expects that you run a marathon. But try to be active. And once you’re fully recovered, you will be able to do most almost any of those physical activities that you have been used to. And you will feel better. You will experience increased energy. It will prevent infection. You will be stronger. And overall, you will recover faster. Start with some slow walks, maybe with your caregiver or with a neighbor or a friend.

And what is also fun is, write it down and say, “Today I walked to the mailbox back and forth, and tomorrow I walk to the mailbox twice,” or something like that. So that is really helpful and documents your process and your recovery. You shouldn’t lift anything. I mean so you’re happy to see your grandchild and the grandchild wants to jump up on you. That’s not such a good idea right now. Just wait a little bit, and you will feel when you get better pretty soon. But that also means shopping bags and things like that, it’s not the best idea to really engage in that. And if you are a swimmer, you will be able to swim again. Even though you have a bag or you can wear as a female, it’s might be a little bit easier to conceal it, if you have a one piece bathing suit. But men also can we have one of those t shirts, those swimming t shirts, and that should be fine. Swimming will not harm the stoma, and they are waterproof stoma covering is available that will keep everything inside, nothing goes outside that shouldn’t go outside and nothing comes in that shouldn’t come in. So I think that works pretty well. And if you are not a swimmer, then you might do something else. Not everybody has the opportunity to swim, but swimming is a great exercise.

A lot of patients are worried about traveling. And what can you… And especially in this day and age with air travel and then you have to wait to enter security checks and things like that. There are a card so let us about your medical condition available so that you don’t have problems with your, that you can tell them at the security check. Create a checklist of what you need while you are away. Always pack at least twice the amount of supplies. If you are traveling within the United States, it’s much much easier to get the supplies that you needed, you can even send them to your destination where via UPS or FedEx. If you travel transatlantic, that might be a little bit more difficult. Not that you can’t get the same supplies if you need it, but they might not necessarily fit or they might not have necessarily the stuff that you really are comfortable using. So it’s much better to bring everything that you know that you will need and put it in a carry on. And check with the airline to see what you can bring and what you cannot bring.

Here are a couple of tips that again we have collected from patients who have done this many many times successfully. If you are on the road and you plan a road trip. And many people prefer road trips because they feel like then they can take rests, they can use the bathroom much more frequently. And since they have more luggage, that might be easier for them to do. So one of the things that people are doing is that they pack an emergency kit of supplies, which is much easy to learn, they also pack extra home… One of our patients says he always has an extra travel bag that he has in his car. He doesn’t even take it out. And this travel bag contains what he needs medically. So he has one of everything to change, he also has a change of clothes, and he has a changed of underwear and things like that, and it just stays in the car. And that’s then you don’t even need to worry about it. And I think that was really such a wonderful idea. You might also consider for your bag, because it’s more comfortable to use it if you’re using a leg bag rather than a bag that is closer to your abdomen, because that might interfere with your seatbelt, and you want to be safe, of course.

Dr. Diefenbach: So let’s talk a little bit about emotional health. I talked about it a little bit earlier. But for a lot of people it takes a while to adjust to this new normal. Life as you’ve known it is, it’s different. And you might get frustrated, you might get sad, depressed about the things that you’re now experiencing. And you might be frustrated, for example, that you don’t recover as fast as you think that you might do. Or you might be very worried about that the cancer might bite come back. So there is a lot going on. And as I said before, when there is a lot going on, the best thing to do is to communicate it, talk to your family, talk to your medical team. If you don’t want to talk to your family, maybe you have a friend who you can talk to and that’s fine, too. There is no one person who is… What I wanted to say is, regardless of who that person is, you will probably have one person who you might be able to talk to, and that person and talking about it is really helpful.

There are a number of coping strategies that our patients have been using. One of it is patience. I’m not a very patient person. I’m always getting frustrated if things are taking too long. But remind yourself that recovery takes time. And I find it particularly difficult when you’re sort of in those middle stages of recovery, where you’re saying, “I feel much, much better right now,” and then all of a sudden, you’re not. And then that’s when you get frustrated or sad about it. So be patient. Join a support group, I think BCAN that you here shows that you’re interested in. And there are support groups around. Ask your hospital, ask your medical provider, the social workers there. This really helps. I also suggest that people are talking to other people right at the beginning, before something, before they have problems to anticipate the problems.

I mean, you’re listening to me right now. I’m talking about these different kinds of things. I don’t know some people might be newly diagnosed, others might be pros in it. But whatever it is, it is important to get as much information and to have the opportunity to exchange. As for help when needed, try something new if you want. And again keep active just as we said before. Eating well and get plenty of rest. We talked about that, too. And just take breaks which is again, it’s a normal thing to do. You just had major, major surgery. So it will take time.

Intimacy is another issue that is coming up. Your partner might have different kinds of feelings right now about being together. And one of the things and it’s actually on my next slide, but I want to tell you right now, is that you don’t have to have sex to feel intimate. It is, again, open and honest communication, is key. And if you’re interested in having sex, that’s great. If your partner’s interested in having sex, that’s wonderful too. And it takes usually two weeks or so after surgery to do this. And feeling anxious and self conscious about changes in your body is, especially if you can cover it up, it certainly is quite common. Talk to your partner about your physical limitations, talk about what you expect, your pain and so on. Talk about your emotions, and that will create feelings of intimacy. You can cover things up while you’re having sex, for example, of course, try to empty your bag beforehand. And if you want to, again, connect with others as to a care team, your doctors and your nurses, to social workers who have lots of experiences and they have heard everything. So there is nothing new to them. And keep an open mind to know what you feel is what you would like to need or what you’d like to receive and what you’d like to give. There are many, many different ways that you can feel intimate with your partner.

Dr. Diefenbach: Dating is another issue that can be quite difficult. If you’re single, you may be afraid of rejection because of your history of cancer, there is the questions when do you introduce this to somebody who you’ve just met. Some people might just take this, take the dating out of the equation. Totally. I think it’s a process. There is no right or wrong way. But again, talking to others who have been in this situation might be very, very helpful to see what their experiences were. And if you’re single, you can build a network of close friends, casual friends and family. There might be more effort from your side too, by calling friends and planning visits. There are hobbies that you might be able to engage in, there are church communities. There are other groups or classes that you might take to meet others. So there are a number of things. You are not a pariah. And you are not any different than anybody else who is single.

Dr. Diefenbach: Let’s talk a little bit about finances. Because cancer is very expensive, and it might bring unexpected costs. There are co-payments, there are medications, there’s supplies, for example, that seem to be very expensive. You have to talk to, and this is really really painful, you have to talk to insurance to ask, what is allowed and what your deductibles are. Try to be as much as an informed consumer as you can. Be organized about it. Either keep a folder or an Excel spreadsheet to keep track of the things that are necessary, from co-payments to authorizations to contact information, all of these kinds of things. Your caregiver can help you too with these kinds of things. And the good thing is that many manufacturers who are providing supplies are letting you use or provide samples for free, which you can then try out a number of times and then stick with the one that is most comfortable for you.

So, let’s talk a little bit about caregivers and what their roles are. We’ve talked a little bit about that. But there is this really important bond between the patient and the caregivers. The caregivers take on new responsibilities and routines. They might all of a sudden, be in a role of support that they’re not used to. They might experience anxiety, fear, depression, and the same range of emotions that the patient feels, they might feel very overwhelmed by all of these things, especially if they have a family also to take care of. So the good thing is to figure these things out beforehand, before surgery. Planning is great. Planning is your friend, and try to set up a schedule. And you might have not only one caregiver, or you might need not only one caregiver, but you might actually need more people who rotate, and help you help the patients through this time. Again, a plan is a great thing.

So organization here. Your caregivers keep track of the medications, the appointments, the daily care and supply needs. And it’s very easy to get lost in all of this, and get overwhelmed. And here are some of the things that we have heard from caregivers, successful caregivers are things that they have done before. Also from a caregiver perspective, what it helps, sometimes it helps to be less… There are people who are these take charge people who are trying to take control of the situation, and this might not go too well with the patient, especially if they’re also have a strong personality. So there might be some conflict in the making. So, there needs to be some negotiations. And this can be done by also giving some tasks to the patients as well.

Managing medication, there is medication list. There are a lot of places where you can download these kinds of templates. You all have seen these pill organizers, those are great. So this is something that you can ask your care team also to help you with to figure out and to reconcile the medication that you have. That is actually something that is quite important. After bladder cancer and after surgery, if you’re on medications beforehand, you will be on medications afterwards, and there will be a lot more of it. So talking to your physician or talking to a pharmacist to reconcile those medications, is really, really important. Once a medication is no longer needed, it’s important that you just safely dispose of it. Don’t flush it down the toilet. You can return it to your pharmacy or in your doctor’s office.

Dr. Diefenbach: There is really… I mean we all have to be aware, as a caregiver, of our limitations that we feel. As I said, it can be quite overwhelming. The caregivers might as much experience sadness and anger or loneliness, that the patient feels. They might feel guilty for the things that they can’t do or that they might miss out. They can’t take care of other things. So it’s really, it can be a stressful time. And one of the most important things, and I’ve stressed this a number of times is that, talking openly about one’s feelings and talking with other friends or family, is really important. And if necessary, also seek help. And you need a break. So as a caregiver, if you feel that you are really distressed, then signs of that is that you feel exhausted, rundown, or irritated, that you don’t sleep well, that you do not enjoy the things that you used to enjoy, that you don’t even want to talk to us or to your friends so that you withdraw from them. And again, address these things before your own health suffers. The caregiver might need also a caregiver, and things that help the patient also help you. Exercise, eating right, taking breaks, talk to others, joining caregiver support group.

And you can do things. These conversations can really be quite nice for you too, so that you can… If you open up, you will see that your patient might open up as well. And you can do fun things like playing cards. And the more support that the caregiver has, the better the outcomes are for the caregiver as well as for the patients. There are programs that allow you to take off from work. There is the Family and Medical Leave Act that entitles you up to 12 weeks of unpaid time off, if you can afford it. And I have listed some of those requirements there. So the employer or your employer must have at least 50 employees there. You must have worked 12 months at this place, and you must have worked for about 1250 hours. But you can talk to your HR department to figure these things out.

And here is the list of some additional resources that I’ve put together for you. Of course this BCAN, there is the American Cancer Society, Urology Care Foundation, there’s the Cancer Support Community, the National Cancer Institute, United Ostomy of America Association. And for caregivers, Help For Cancer Caregivers, My Cancer Circle, American Cancer Society Caregivers Resource Guide, and the Family Caregiver Alliance. I want to thank you for your attention. I will be available to answer some of your questions. If you want to contact me, you can reach me at MDiefenbach@Northwell.edu. We have a current study going on that tests out the crisp platform that is for newly diagnosed and newly treated patients. And if you’re interested in contributing to evaluating this program, then please contact me at this email. And thank you again. And here are BCAN sponsors again. You’re muted.

Stephanie Chisolm: Thank you so much. This was a very thorough program. You covered a lot of information. So we have time for a couple of questions. And I want to refer everyone to the chat box. I put in a number of links to resources that BCAN, some for our webinar, there’s others for nutrition, we have a page on traveling, and a bunch of other things, including our tips for caregivers. So you can click any of those links and keep them open on your screen. When the program is over, you can download all of that information. So I’m going to hit a couple of questions that you’ve mentioned and see if I can get to some of those. So how can you tell if depression is a side effect of medications, or of just the general circumstances that’s going on? What do you tell patients when they’re coming to you and they tell you that they’re depressed, and they don’t know if that’s because of their medication or their condition?

Dr. Diefenbach: Well, I would say that that’s not too hard to figure out because depression should be listed. If it is medication related, then it should have been seen as a side effect beforehand. So you can talk to your healthcare provider to see whether depression could be a side effect of that particular kind of medication. And the health care provider will probably ask you a couple of other questions that might go to the root of that depression. If there is an indication that it might be medication related, they might be able to switch medications to something else, and then you can try out and see whether your condition improves.

Stephanie Chisolm: Okay, that’s really helpful. So we know that the science is telling us that patients with bladder cancer might have more issues of depression. So when somebody feels down or if a caregiver feels that their loved one with the diagnosis is really struggling, how do they get into care? How do they bring that up with their doctors? What is your recommendation?

Dr. Diefenbach: I think so there are a number of ways that should be addressed. The first thing is that you should reach out to your provider, and ask for to speak to some of the emotional support staff that is available in any hospital, there’s social workers. Or you have been in the hospital for quite some time. So you might have a bond with a nurse established, you can contact them. But I would talk to your provider first, and just say something like, “I just don’t feel right. I have these kinds of symptoms. I feel tired, I don’t smile anymore. I feel this plus, my sleep is not ready. I can’t sleep well,” or, “I sleep too much. I can’t seem to get out of bed. I don’t have enjoyment in life.” If you experience these kinds of symptoms, then again, talk to your provider. And they can refer you to the appropriate places.

Stephanie Chisolm: So do you often have the opportunity to connect people to a medical social worker that specializes in oncology? Is that something that they should ask for?

Dr. Diefenbach: Well, this depends on where you are being treated. If you’ve been treated in a larger hospital, and bladder cancer surgery is a fairly difficult surgery. So there are usually these with larger hospitals where this is performed. They should have these kinds of oncology support staff available. So you can ask for either a psychologist or for a social worker who is familiar with these kinds of issues. You don’t need to talk to a bladder cancer specialist in for social support. They usually are available to talk about or for patients with all sorts of cancer issues. But somebody is I’m sure should be available.

Stephanie Chisolm: And then I think we have time for one more question, because we’re a little bit over our hour. But there was a question that came in about looking into seems to be available all over the country, in many cases, medical cannabis for things like pain management. Is that something that you think people should talk to their physicians about? What are your thoughts on whether or not cannabis can be used to help handle some of the side effects, but also even some of the stressors of having bladder cancer?

Dr. Diefenbach: So, I have not much experience with that because it is depending on where you live in the country, it might be quite restricted. Not every state makes it available. These physicians in the state of New York, I know that there’s a registry, and physicians need to be registered and trained in the dispensation of medical cannabis. I’ve heard that some patients use it. Again, I think this is something that is best addressed by your provider. In most cases, you cannot purchase a just like that off the street, and I would not necessarily advise you to purchase it off the street, because it might have… Well, then you’re not dealing with medical benefits, you’re good. And you might have other others other side effects that could interfere like constipation, for example. So definitely talk to your provider.

Stephanie Chisolm: And the individual provider would be the one to make that connection with using cannabis as a medical treatment. So they would have to write that prescription for you as well. So again, always check with your doctor before you do anything. I just wanted to address that question that came in. So I think this has been a very comprehensive program. Remember to go visit us at BCAN.org. We have tons and tons of various resources on sexuality and intimacy, on nutrition, on coping, a lot of different things that are out there. We really appreciate it.

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