Ashish Kamat: Hello and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, Professor of urologic oncology and cancer research at MD Anderson Cancer Center in Houston, Texas. And it's a great pleasure today to welcome two nurses from the UK who have come together today to help us understand the perspectives from the nursing viewpoint for our bladder cancer patients across the pond. Shievon Smith is a metastatic uro oncology clinical nurse specialist at St. Bartholomew's in London and Jacqueline Duncan is a urologic oncology clinical nurse specialist at the Imperial College in London. With that, Shievon and Jacqueline, the stage is yours.


Jacqueline Duncan: Thank you very much. If it's okay, I'm going to start with just a little bit of a perspective on the kind of bladder cancer diagnostic pathway in the UK. In particular, I'm going to focus because both me and Shiv work in London, so kind of the London tracks as well. Currently, I work actually in the diagnostic side, whereas I know that Shiv works in the sort of more of the metastatic, that sort of cancer. I currently work doing the diagnostic pathway for Imperial Hospital. I run that service completely with another nurse specialist as well, an advanced nurse practitioner. We currently get a lot of patients coming through on the hematuria and we call this, hematuria pathway, which I'm sure most people in the country and the world have as well. But my particular service in London, we try and do everything within what we call a one-stop, rapid access clinic in one day to see the patient, assess them and do all their diagnostic workup in that one day.


We see quite a lot of patients, obviously a whole range of things. Patients coming through with, ladies with recurrent infections or like you say, the visible, non-visible hematuria. As you probably know, currently, we try and see our patients in the UK on the pathway within sort of a 31-day target to get to their transurethral resection. And there's been quite a push, particularly with my role in my job at the moment, that's what I've been employed you actually is to try and speed the pathway up for these patients because there's obviously been a lot of push that the pathway is quite a long pathway for the bladder cancer patients. My role actually is to just focus purely on diagnostics and looking after the patients. We try and see our patients and get all their scans and investigations done within 28 days and hopefully get them to TURBT a little bit faster. But as you know, worldwide there sometimes there can be delays, particularly from them getting to us, particularly ladies with recurrent infections.


And I'm sure Shiv and me know that, particularly patients that our perspective, because I used to work looking after patients with cystectomies, they do take quite a while sometimes to reach our sort of particular hospitals. That's kind of my perspective because it's actually quite a new role that I've just taken on. And my goal actually is to try and get more light on bladder cancer because at the moment there's quite a lot of funding for other areas in the UK and I'm sure all the urologists and everyone in the country would agree with us in the UK, but there's not a lot of perspective on bladder cancer and getting that word out there to the GPs and to also just to the general public as well. I'm going to move on, I see all of this slide and I'm going to probably let Shiv do a little bit of talking about probably the general pathway if you were happy to do that Shiv.


Shievon Smith: Thanks again for the invite, Prof Kamat. Thanks, Jackie. Obviously in the UK, as we just said, we like to get our patients back as quick as we can really, which is within six weeks to do re-resection, especially if there isn't any muscle in the TURBT. And obviously, some of our patients would be having their mitomycin postoperatively. Obviously, if it's a large tumor, then we wouldn't want to do that. I'm sure that everybody knows quite a lot about the pathway and I think it's quite similar all over. Many of these low-risk disease patients are discharged after a year. And as Jackie already said, I'm not currently working in that side of the pathway so my role doesn't involve giving any BCG, where Jackie's role previously would do that. And now she's gone off to be a practitioner because she's left our cancer center hospital that we used to work with quite closely.

My role is the other half of the pathway. I'm seeing the muscle-invasive patients coming through. Some of these people might have had delays as Jackie just said because maybe they've been treated by their GP so they haven't been referred straight over to urology. Obviously, that's a delay itself. Perhaps they've been delayed having their TURBT because of whatever issue. As we already said, there's a 31-day, 62-day pathway in the UK. Generally, for bladder cancer patients, the clock would stop at 31 days. Now for a prostate cancer patients as an example, they would still continue to have a 62-day pathway in place.


But because as we all know, a bladder cancer TURBT is obviously a diagnostic procedure and a treatment for many, but obviously for these patients who need to have re-resection or when unclear if it is a muscle-invasive cancer, because that also happens sometimes where the imaging is not reflective or the patient hasn't been in the scanner, there might be some sort of disparity, then obviously we want that tissue. And we do send some patients for vaccine sintered, personal treatments that Professor Powers is looking into here at Barts. There's a lot of other things that we're doing in terms of research.


Our patients obviously are going to have their scans, which generally is a CT chest, abdomen, pelvis. We are sending some patients on for MR because there's a lot of research, as you've heard already from Prof Kato and Prof Nick James as well, where they're looking at imaging using that, to know that patient's got upper tract issues. We know that it's most likely they've got muscle-invasive disease. Should we be sort of pushing the pathway a little bit more to get these people through? Now there's some data release from NICE and it was going back to 2015 where they actually found that some individuals were taking about five months to get through the pathway. Now, clearly, that's really, really bad.


Obviously, the part of the pathway I'm focusing on is more getting people through their neoadjuvant chemotherapy and then referring them over to our teams at the cancer center, which used to be in my lovely colleague, Jackie. But as you know, she's gone off to a different role. Those patients, obviously once they've had their chemo, soon as they've had first cycle, we'll be letting the cancer center know, they'll be getting them in for EUA. Obviously, they're working the patient up, they'll be coming for their pre-assessment fitness testing. And then obviously they'll be going off for the anterior accentuation or their radical cystoprostatectomy. Some of our patients obviously will have ChemoRad, so they'll be seen here by our clinical oncologists who we work closely with. We have a very large joint clinic here at Barts.


We have the medical oncology teams that I work with. We have our surgeons here from both the cancer centers and our local surgeons that are obviously doing prostate as well at the same time. And then we also have our clinical oncologists here with us and our radiotherapy department is here in our basement. Our patients are quite quickly through the pathway. Unfortunately, those patients who are not going to have their bladder removed or they can't have any radical treatment or maybe they failed treatment lines, they'll be offered clinical trials and immunotherapy as their next adjuvant. If they've had GemCis as their original palliative treatment, they may well be moved onto pembro or ateza.


As I said, Professor Powers runs a lot of trials here so we're very lucky that our trial center is about 70/30. My perception is quite skewed because even some of our early non-muscle-invasive bladder cancer patients may well go on a clinical trial, which may also involve immunotherapy. And there are a number and they open and shut very regularly so I always have keep up with Professor Powers to confirm what lines we've got open. Normally our trials team run all of that.


I just put a little slide up here because I think that Jackie and I, both as nurses we're more keen to talk about nursing pathways because I think that most of you are very up on the actual pathways. And I think a lot of things that are not discussed are toxicity from drugs. He was looking at hormone and chemotherapy giving, obviously causing changes to people's personal lives in terms of their sex lives. Obviously, if somebody's still having a bladder because they've had radiotherapy, they're still going to obviously have painful sex and dryness, vaginal tissues might change a bit like when we're going through and the menopause for us ladies. Obviously, radiation to that area is going to cause bleeding potentially, irritation, stenosis, shortening of the vault. Some of our patients who maybe have had anterior accentuation, put my teeth in, they can also have leakage of obviously lymphatic fluid. That can be a problem.


Many of our patients might be on certain painkillers or anti-sickness medications. We do actually use a lot of the olanzapine, which is an antipsychotic, but it's got a very good antiemetic property so we use that. Obviously, our non-muscle-invasive patients, as we all know, can regularly have cystitis and irritation. Again, you can get that from radiotherapy. All of these things have to be considered. And I think myself and Jackie when we was putting slides together, though that's quite important.


Now, this next slide is really controversial because it's got a vibrator on it and everyone normally gets really excited but these are things that we have to talk to patients about because if you're not talking to the patients about their sex life or biographical disruption, and if you don't know what I mean by that, what I'm saying is, you saw yourself having this life with maybe a family or your children growing up and now this cancer's got in the way and your life is completely changed. Maybe how you feel about yourself, maybe because you've got a urostomy, maybe because you had unfortunately an injury at the time of your surgery. Maybe you've got two stomas. We're treating cancer patients because we want to obviously improve their cancer outcome and get rid of their cancer on many occasions. However, we're leaving these people with these toxicities, which aren't always addressed. I think that this is really important. And I know that Jackie, in the previous job, you used to have a psychosocial therapist and sex therapist. I think it's limited for some patients. Is that right, Jackie?


Jacqueline Duncan: Yeah, we do. But actually, I think that's quite in the UK is quite not a resource that's put a lot into it with bladder cancer. We found that a lot of our cystectomy patients weren't getting the support they needed. Whereas I have to be honest, prostate cancer was getting a lot of money, funding to have specialists, the sexual and also psychological help afterwards. There was quite a lot of pressure for me and my colleague in my last role to get more, actually basically just get it put into the pathway as a standard rather than just us having to refer and push for that. I do agree. It's something that I think also needs more work actually in the UK as well.

Shievon Smith: Thank you. And then the other thing on this slide as well, where we're talking about considerations for fertility because obviously SACT treatments and surgery themselves are going to cause issues with that. In the UK, our male patients can have fertility treatments offered up to the age of 50 and obviously for our female patients, it's a lot more difficult to achieve removal of the egg and storage, et cetera. It's really quite difficult to do that for those individuals and the ladies it's normally up to about 40 years. Again, obviously, with our bladder cancer demographic, it's usually that older individual. However, in our clinics, we are actually seeing some younger patients coming through.

Just turning onto male concerns, that also includes hypogonadism. And obviously, there are changes to their hair and feeling less of a man and masculinity, obviously, suicide and depression's reported in the literature. And as you well know, Professor Kamat presented at EUA, I think it's 2017. That data is out there. But again, we're not really doing much with that. Obviously, for our men, we are offering them treatments in terms of PDA5s or pumps, et cetera, for rectal dysfunction. And I think that that's on this slide here.


Obviously, work to be done. I think that Jackie would completely agree with me. We need maybe more nurse practitioners that are marvelous, like her, coming out and obviously taking some of that role and strain away really from the consultants. Obviously in urology, we're doing five tumor sites, we don't actually cover the penile cancer here and Jackie, your role now is just bladder, is that right?


Jacqueline Duncan: Sorry. Yeah. I've been employed actually, I'm very lucky. I've got a job where I'm just doing all the diagnostics for the bladder cancer only and so resections, cystoscopies, and everything. I can focus on looking after them and then actually making sure they get to diagnosis and being able to do that as well. I'm very lucky, I'm doing bladder cancer.

Shievon Smith: Thank you. The other thing to highlight obviously is during COVID at St Bart's, we didn't actually stop giving treatments. A lot of our trial patients obviously had to keep going on because otherwise, that would be a big deferral with the research trial, which couldn't really happen. And a lot of our patients still had chemotherapy, immunotherapy, hormonal treatments, TKIs, et cetera, because obviously recovering all of those four tumor sites. Thank you.

Ashish Kamat: Great. Thank you so much. That was a very concise and comprehensive review of the pathways and a lot of information under. If I could have you sort of do a little quick round table. I'm glad that you brought up the issue of survivorship, the issues that go on with patients during treatment for non-muscle invasive disease or invasive disease, and of course after treatment or after definitive treatment with surgery for invasive bladder cancer. Could you tell me a little bit more about who actually runs those programs? Do you have a survivorship clinic? Is it run by consultants, nurse practitioners? Is it patients being sent back there, general practitioners? How does that actually work?

Shievon Smith: That's a really good question but it's generally us nurses that are doing that work. Obviously like Jackie and myself, colleagues in the team. Here in our team, with the metastatic nurses, there's three of us, we've got a training post nurse and then there's two-band 7s. They're senior nurses and I understand that Jackie's now a band 8 so she's even higher. We are obviously looking at the patient holistically because we're looking at the other issues as well as some medical issues that we might be obviously assessing in the clinic as we all are and referring for scans and things like that. We would refer onto a GP if we needed them to action something or when we're giving them updates. But generally, we would see the patients here in the clinic, so we give one-to-one support. If we were concerned about patient and we would ask them if they wanted a referral maybe to the psychology team or as we were talking about previously, with the sex therapist, which many hospitals even in the UK, can't access that.

But obviously, there are places that you can refer to. We would certainly do that. And I'd normally just say to the clinician that I'm working alongside, or if it's a patient I've seen on my own clinic, but I would still report to that consultant and say, "By the way, I've referred this patient onto psychology services and these are the reasons to why." Because it may well be that the patient's come to the clinic and stated that they're feeling very low. They might want to speak to somebody one to one. And obviously, that can be picked up in a session. We're also very lucky that we have a Macmillan center and a Maggie center to on-site. The Maggie center is a cancer charity, which has got its own building on three floors. They offer clinical psychology, they offer various support groups. We run our bladder cancer support group out of there, which is a Flight Bladder Cancer UK group. Jackie, the over at UCL, was that ABC bladder group?


Jacqueline Duncan: At Macmillan Center at University College in London where I was before.

Shievon Smith: Many of the nurses are taking the lead on these groups and it's various charities that will support that, which is quite good. I hope that answers the question.

Ashish Kamat: It does. And I'm so pleased to hear that. Both of you obviously work in centers of excellence and you have these programs. How is it in the rest of the UK? Are these programs number one, available to patients from other parts of the country that may want to access them either at your site or locally? Or is it a disparity in access and care that exists in many parts of the world that you are seeing as well?

Shievon Smith: Most of those groups are run by the specialist nurses at each center. If somebody contacted us, we'd be more than happy for them to come and join our support group. It isn't closed down. And equally, that was the same for Jackie's group over UCL. Some of our patients, because that's our cancer center over there, some of our patients would go to see them for obviously their cystectomy. They might join that group too. And then when they come back for their care here, which would be the obviously close follow-up, then they might rejoin the group here. It's quite flexible. I think as nurses, we embrace that and because we're lucky we have the NHS funding, all of these things, and charity support, we can obviously open it to anybody. Whereas I think obviously in America, your patients are funding these things and maybe it's more difficult. I think there is disparity.


And I'm sure that Jackie would agree because maybe some nurses can't give the time in their day because their jobs are very busy and perhaps they can't organize a support group or maybe their patients don't want to come in the day and they want to do it in the evening. And perhaps those nurses have children at home or are busy and they can't support that. What do you think, Jackie?


Jacqueline Duncan: Yeah. No, I agree. I think I'd be honest with that. I think we're very lucky. We're quite a big trust, so we do have access to probably a lot more funding, a lot more resources. But I can't really comment completely for the rest of the UK, but I would agree I'd say that. I think you are right. It's just, I think sometimes in some hospitals, unfortunately, the nurse specialist doesn't have, they may be doing more than one to tumor site like Shiv was saying. I'm very lucky, my last job was all bladder so we could focus on that group, but I think it's not really a true representation of the rest of the UK. I think there's a lot of pressure on other nurse specialists and other nurses to looking after other tumor sites. But you're right, we do have really good. I think we do very good charity support in the UK, particularly with Macmillan and Fight Bladder Cancer, and ABC as well. There is good support from them, I think to get things like the services for them.

Ashish Kamat: Great. I'm learning so much from you and enjoying the discussion so much, I could go on forever, but in the interest of time to wrap it up, maybe I'll have each one of you leave our audience with some closing thoughts. Shievon, be maybe you 30 seconds or a minute. and Jackie you after that and we can wrap it up.

Shievon Smith: Thank you very much for inviting me today. I've really enjoyed this conversation. I think that we really need to focus our care on our bladder cancer referrals with more education for GPs perhaps, to get especially our ladies through the pathway. And I'd really like to see more discussions about sex and long-term survivorship if that's at all possible. Thank you.

Ashish Kamat: Jackie.

Jacqueline Duncan: Yeah. Thank you very much for having us. It's been a real honor to be part of this. What I would say, I kind of would want to echo Shiv's words as well, but I think the biggest thing I said, I'd like to really make bladder cancer a bit more of a campaign in the UK. I think, I know in the UK, we just don't really make enough of going to see your GP about certain symptoms, particularly for ladies, like you're saying, with infections and things. And I think exactly that, I think we really need to push for survivorship post-cystectomy and radiotherapy. I don't think there's enough funding, I think, and enough time given to that for the patients afterwards. I think if that's where we could make a small change in that area, that would be my top two.

Ashish Kamat: Great. Again, thank you both so much for taking the time out of your busy schedules and spending it with us. This has been really great. Stay safe and stay well.

Jacqueline Duncan: Thank you very much.

Shievon Smith: Thank you.