BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Tue, 12 Nov 2024
How do you care for patients with penile cancer? As urologists, we’re trained to think about diagnosis and treatment, but how can we help manage the psychological impacts of penile cancer? In this episode of BackTable Urology, host Dr. Ben Ayres, a urologic oncologist specializing in penile cancer, discusses the unique psychological challenges faced by penile cancer patients with bladder cancer survivor Dr. Rick Bangs and nurse Rob Cornes. --- This podcast is supported by: Photocure https://www.photocure.com/ --- SYNPOSIS This episode emphasizes the importance of awareness and peer support in reducing isolation and stigma associated with penile cancer. The conversation also explores the role of multidisciplinary care and the benefits of holistic approaches to patient decision-making. --- TIMESTAMPS 00:00 - Introduction 04:05 - Isolation in Penile Cancer 06:38 - The Role of Advocacy and Peer Support 15:29 - Shared Decision Making in Penile Cancer Care 23:22 - Value of Multidisciplinary Care --- RESOURCES Photocure https://www.photocure.com/ Global Society of Rare GU Tumors (GSRGT) https://www.gsrgt.com
We know that TURBT procedure is critical in the care of patients with non-muscle invasive bladder cancer. With data that shows that CIS was missed by TURBT in more than 45% of radical cystectomy cases and 86% of residual tumors have been found at the original resection site, it's clear that enhanced visualization could be a significant benefit during TURBT's.
Further, with only 23% of patients coming back for re-resection, it's all the more important to do a complete TURBT right from the start.
In the real world, you're not going to have to provide everybody with everything they need, especially around penile cancer. But if you can promote that sort of online or virtual meeting or support, these groups will have people who can offer tips or advice on how they manage that situation.
plus the actual psychological benefit of being able to reach out and express your worries or fears amongst people who know. And on that group as well, there's a lot of partners and family members who will also post or ask questions on patients' behalf.
So I think we have to really foster and promote peer support, whatever exists in penile cancer, because it is a way we can meet some unmet clinical needs.
Hello, everyone, and welcome back to the Backtable podcast, your source for all things urology. You can find all previous episodes of our podcast on iTunes, Spotify, and at backtable.com.
Hello and welcome to this podcast on the unmet psychological needs in penile cancer. I'm Ben Ayres. I'm a consultant urological surgeon working in London in the United Kingdom and I specialize in managing patients with penile cancer. We do have a centralized service in the UK and therefore we end up at our center gaining a lot of experience in managing these patients.
I'm delighted to be joined this evening by my two colleagues and I'll let them introduce themselves. So Rick, please say hello to the audience.
Hi, I'm Rick Bangs and it's really a pleasure to be here. I'm a survivor of bladder and prostate cancer. I do a fair amount of research advocacy in my retirement years, post-corporate, and mostly around clinical trials. I've worked with the National Cancer Institute and the Swag Cancer Research Network. And I also work with my peers.
So most of that work was in the bladder space, but I work with my peers in other cancers. Probably for our listeners, two items of note. I am on the National Comprehensive Cancer Network Bladder and Penile Guidelines. That's a U.S. guideline entity. And I also host a podcast called Bladder Cancer Matters for the Bladder Cancer Advocacy Network, or BEACON, as many would know it.
Thank you, Rick. And we're also delighted to be joined this evening by Rob Corns. Rob, please introduce yourself.
Hi, thanks. I'm a nurse specialist based in the UK working for a small male cancer charity called Orchid. I'm also a patient advocate representative for ERNE Urogen, which is a European organisation for rare network diseases, and also a patient advocate and representative for penile cancer with the European Association of Urology Patient Advocacy Group.
Well, thank you both for joining us this evening. And as I say, hopefully we're going to have a good and useful conversation about how we can really increase the awareness and advocacy around this very rare cancer and perhaps what clinicians can do to try and bring a more holistic approach to managing these patients' needs.
Because as I think we're going to discuss, a lot of their psychosocial needs, unfortunately, are often left behind. We're very grateful this evening that we're able to do this podcast and we've been given this opportunity by Backtable and also by the Global Society of Rare Genital Urinary Tumors, a group that is really passionate about.
education for clinicians and for patients going through the treatment and management of rare genitourinary cancers. So we're very grateful to both these organizations for giving us this opportunity to discuss penile cancer in more detail today. As I said, penile cancer is a very rare cancer. Because of its rarity, there is a lack of awareness.
There's a lack of awareness amongst the general public. Unfortunately, there's also at times a lack of awareness from the medical staff that the patients may seek for help. This can often lead to delay in diagnosis. And on top of this, there's a lot of stigma associated with this cancer. And as a result, patients can often feel very, very isolated.
So, Rob, I wonder if you could tell us more about the isolations that patients with penile cancer often feel and what's been told to you by the patients you've worked with in the past.
Yes, thanks, Ben. So I think the first thing is that we need to realise that penile cancer, although exceptionally rare, will have the biggest consequences from physical and psychological wellbeing. All curative treatment is going to involve some form of surgery.
So men are going to have to live not only with an altered body image and physical problems in their everyday life or readjusting to various habits that they've got used to over their lifetime, But there's also a big impact of isolation. And I think this is overlooked to some degree.
So if I give you an example, if you're diagnosed with prostate cancer, which is the most common cancer in men, the chances are that you'll probably know somebody maybe in your neighborhood who's been affected. or a friend or a colleague who knows somebody who's been affected.
If you speak to a local doctor, healthcare professional, pharmacist, they will have a great deal of knowledge about prostate cancer. They will be able to relate to what you're experiencing and may be able to help support you. But with penile cancer, we're in a completely different situation. Many people don't even know it exists.
And that includes healthcare professionals who will never come across it in their careers. So when it comes to men trying to find answers, to readjust, there is nobody at a local level that they can really speak to who has been through something similar. And I think we end up with this very isolated group of men which would then impact again on their psychological well-being.
And the majority of men with penile cancer will never, ever meet anybody else who's been affected, unlike prostate cancer. Thank you, Rob.
And Rick, you said at the start of all the advocacy roles that you've been involved in, how do you think advocacy can play a role here? How can advocacy play? reduce isolation and how can it help with raising awareness of these rare cancers such as penile cancer?
Well, I think awareness is clearly the first step. And as a former brand manager, we talk about awareness leading to interest, then desire, then action. So pretty much any action is going to require a level of awareness. Nice for some cancers for patients to come in with some understanding of the disease to know people who've had that disease.
But for those of us, and bladder still falls into this area despite a lot of efficacy work, most of us would come into genitourinary cancers with not a lot of information about the disease, would not know what to expect during treatment, would not know what kind of support there is.
And so I think individual advocates can play an important role about raising that awareness, helping support researchers in terms of clinical trials, help the clinicians, the doctors create great materials and even helping connect. patients to other patients. At Beacon, they talk a lot about looking for people like us.
And so it's really helpful if you can find somebody who's kind of been through the experience. They have a unique experience from a lived experience perspective that sometimes is hard for the clinicians to communicate or to effectively communicate given the limited time that people spend in clinic. Thank you for that insight.
Talk to me, Ben, about, so we know this low awareness here, so how does that add to the psychological stress that somebody who's been recently diagnosed, one of your patients, how would that look on the patient side?
So when patients present with any cancer, they go through a journey and clearly with penile cancer, there's that additional stigma associated with that journey that can impact on how they process things and how much they open up and discuss things and move through the psychological journey that they need to if they're going to adapt to the new situation.
But when it comes to awareness, patients tend to fall into two categories. There's a patient that has had a condition for a number of months or years and they've been seeking healthcare advice about this and seeing lots of different doctors, pharmacists, nurses potentially, often being given multiple different creams to try on the lesion.
And so ultimately, when they are diagnosed with a penile cancer, they not only go through all the psychological stress of being diagnosed with a cancer and the part of the body that it's on, it's a double hit for them. They've also got this anger, this frustration, this disappointment that they had tried to seek help for this.
And through lack of awareness, through lack of understanding of the clinicians that perhaps they saw, there's been a delay added to their pathway. And so at times you've got... got to try and help them manage some of that frustration, that disappointment, and in some cases anger that they feel towards the healthcare professionals because of the pathway they've been on.
On the other hand, you have people that because they didn't realize you could get cancer on the penis and because it's a part of the body that they don't wish to talk to their mates about or talk to their other support people or partners about, they've ultimately led to the delay in their healthcare. And then you get this, what if, what if I'd come earlier? And a bit of guilt comes through.
There's a patient that has worked really hard to help with advocacy here in the UK and has put on a play. And he talks about ignore it as a way of trying to manage with this and having led to a delay in him presenting.
And I think, again, that adds to that psychological stress because they're starting to blame themselves when, again, clearly they need to try and come to peace with that and move forward. So it does make a big difference, this lack of awareness. So more that can be done to raise awareness is really, really important. So, Rob, we've chatted a bit about the role of advocacy and the isolation.
And clearly, if patients can meet somebody or talk to somebody that has had that cancer, they may feel less isolated. They may feel more supported.
what are you aware of in terms of peer support that there is out there for penile cancer and are there any benefits that some of our patients might be seeing at the moment well obviously like again prostate cancer so in the uk with prostate cancer there are around 110 regional support groups which men can tap into penile cancer because of its rarity is a completely different situation
So in the UK, I'm only aware of three support groups for penile cancer, as well as a big online closed Facebook group. Now, I can tell you that that group has been so incredibly helpful to a number of men who have been on there and used it simply because they can just reach out and hear from somebody else who actually knows what they've gone through.
There are people in good and bad situations, obviously, but the majority of men who are using peer support in that way, it's dramatically improving their outlook. And I think we're missing maybe quite a big thing here because we're all talking about unmet needs.
In the real world, it's not going to be able to provide... You're not going to have to provide everybody with everything they need, especially around penile cancer. But if you can promote that sort of online or virtual meeting or support, these groups will have people who can...
offer tips or advice on how they manage that situation plus the actual psychological benefit of being able to reach out and express your worries or fears amongst people who know and on that group as well there's a lot of partners and family members who will also post or ask questions on patients behalf so
I think we have to really foster and promote peer support, whatever exists in penile cancer, because it is a way we can meet some unmet need, clinical needs.
Thank you, Robin. I think... In addition, you make a really important point about partners there. Partners need supporting through this journey themselves, but also they can be a huge support for the patient.
And so whatever we can do to support patients and to help meet the unmet psychosocial needs of these patients, of our patients, it's important that partners are very much included in everything that we do to not only help us support the patients, but in supporting them as well.
So Rick, earlier on you talked about information and the role of advocacy in trying to produce information that is really patient-focused and the information that patients would like to hear. And I know when I've spoken to many of the penile cancer patients that I see and work with and those that have come through their treatment, they talk about the fact that
The information wouldn't have stopped them having the treatment. They knew they needed to have the treatment. This was cancer. This needed to be treated if they had any chance of survival. But the consequences of the treatment for some patients are devastating and carry life-changing consequences.
And they say very strongly that they feel as much information as possible up front written by patients would make a difference. What's your experience around that? And how can we as clinicians, those of us that are looking after patients, how can we develop this material? How can we deliver this for our patients?
So I think this is absolutely critical to patients making informed decisions and being part of the decision making process where you would traditionally call shared decision making. So as a patient, I want to know exactly what my choices are.
I want to know, or I should know, what the consequences of not making a decision are, as well as what the consequences of making one of the choices that I have. And so, you know, I can tell you that in the bladder space, a lot of work has been done in this space. When I started, when I was diagnosed in 2006, I had no opportunity to talk to somebody.
The online material was really weak at that point. And today's survivor has a much different experience. I'm hoping in 20 years, the experience will be equally as improved as it was for me. And so, you know, to have an online community, the bladder community was several hundred people when I was diagnosed. It's now over 50,000.
you know, podcasts and they do a survivor to survivor program to connect people. And so having that kind of experience and being able to participate in a dialogue, in addition to having materials that you actually as a patient can understand is absolutely critical to making the right decisions and understanding the consequences.
And could I just ask you, Ben, that's obviously a very important point. We've had this discussion before around shared decision making. So bearing in mind that all curative treatment for penile cancer will involve surgery, how far is shared decision making involved?
And how do you speak or explain this to your patients when you have to remember that they're going to have absolutely no insight at that point in time as to what the long-term consequences are going to be? How do you approach that in clinic practice?
Yeah, thank you, Rob. And I've talked already about this being a journey and is a journey for the patient. And we're there to support and help them along that journey. And I think it's really important to appreciate that when you see them for the first time in clinic, you've got to take a holistic approach. You've got to do it as part of a multidisciplinary team.
So we have a nurse specialist that will support us. And we approach the topics that we need to approach, but see this as the very start of the journey and that we will have, hopefully, several more interactions with the patient prior to the treatment starting. Now, we don't want to add delay to the pathway with cancer. You want to get that treatment started quickly. So these will be...
Telephone calls, perhaps video calls with today's technology. After that initial consultation, I think once you've built a bit of a relationship up with the patient, that doctor-patient relationship, you can then talk to them time and again afterwards to help build the information that they need. We give them written information.
We do a health needs assessment, which is a holistic approach, not just addressing their cancer, but trying to address their wider needs. And there's some good documentation out there provided by cancer charities that one can use to do that.
So we have this holistic approach, give them written information, and hopefully by going through that information slowly and steadily and giving them guidance,
time to adjust to it it does allow that shared decision making it does allow those questions to come out i think you know if as a clinician you just give all the information in one go it can be overwhelming to the patient they only take a small amount of it on board and that's why Afterwards, they become potentially shocked at what has happened or the consequence of the treatment.
And as a clinician, you think, well, we did discuss that, but they didn't hear. And so it's really important you make sure that they've heard, that they've understood, and that you do in multiple ways. meetings.
One of the challenges we have around the rarity of the cancer is that we centralize the service in the UK, which means that there's the expertise to deliver that, but the patients often need to travel a long way. And so that's why we have to use technology to help. Yes, we do need to see them. We do need to meet them and build that initial relationship. But then further conversations can be had
using telephones using video calls to try and take that burden off the patient traveling into the center at every point clearly they need to come for for some of the treatment and then after we've been through the treatment i think to try and help start to address some of some of those psychosocial needs that as i said unfortunately a lot of patients tell us are unmet again it's really important you take that holistic approach it's really important that they when they come and see you or when you do your video call to go over there
their follow-up clinic appointment that you're not just thinking of the clinical you're not just looking for disease recurrence and checking the you know wounds have healed it's important that you do have that ability to open up discussion around how the surgery has impacted the patient how it's impacted them psychologically how it's impacted their ability to pass urine
How maybe no longer being able to use a urinal and needing to go in and use a cubicle, how that might have made them start to feel socially isolated. You know, I've had patients tell me they stopped going to watch their football or soccer match or rugby or other sporting event because they felt isolated. They have felt that people will pick up that they're not using the urinal properly.
when they all go into the toilet at the break at half time. Likewise, they may stop seeing friends down the pub for similar reasons. They don't want to have to answer those awkward questions around using a cubicle. So it's important to try and help the patients open up and then be able to try and discuss some solutions that they might be able to follow. Another
consequence of the surgery is lymphedema. So again, having access to expert lymphedema therapists and being able to put patients in the direction of specialist lymphedema services is really important. One of the things that has been used by some units here in the United Kingdom are patient reported outcome measures.
So by sending that documentation out to the patient ahead of their clinic appointment and asking them to fill that questionnaire in, it almost is unlocking those questions and giving the patient permission to say, look, these are the sort of things we expect to talk about in the consultation, but you're allowing them to fill those questions in before they come to clinic.
So it allows you then in the clinic to say, I've seen your questionnaire and you've mentioned that you're having trouble passing urine. Let's discuss that more. So again, it can help break down some of those barriers in communication because some patients don't want to
trouble the doctor with their problems or they feel that if they mention what they're going through, the doctor may see that as criticism of their surgery. So again, by breaking down those barriers, I think that's a really, really important thing that can be done. So holistic approach, using patient-reported outcome measures, clearly having access to
to a full multidisciplinary team that should include lymphedema experts, psychological counsellors, psychosexual counsellors to really help. And it may be that your hospital is a smaller hospital and can't provide that. Well then it's really important we start working as networks, start working together in a more networked fashion so that those services can be provided to patients.
Talking about this multidisciplinary approach to care, I don't know, Rick, if you've got anything you want to add about the importance of multidisciplinary care in the treatment that you had for your bladder cancer and clearly how we should be trying to work as teams to support our patients rather than as individuals.
Yeah, so I think there's been some evolution in that space and bladder cancer, but it's still evolving because the treatments are evolving and moving away from surgery. So it is really essential that the patient have kind of this view across the specialties that may be relevant to them in terms of treatment, but also in terms of engaging, you know, social workers and in the occasion
our surgeries, dieticians and physical therapists and occupational therapists, you know, making sure that those folks are really engaged in the process. I think one thing that can be really helpful
is for patients to come in and through through advocacy have a set of questions that they should or know the answers to at the end of this particular stage in their diagnosis and treatment that can be incredibly helpful you know patients kind of kind of swear by that once once they have it. And then you can evolve from there.
There's more sophisticated things you can do, but having that as kind of a foundation is really critical. And one of the key questions would be, who's on my team and what disciplines do they represent? And asking questions about people who may not be on the team that you'd like, you would believe based on what you have been provided should be on the team.
Lovely. Thank you very much, Rick, on that. And Rob, thank you for joining us as well this evening. Thank you both for a very, very thoughtful and thorough discussion on how we might approach lack of awareness, isolation, patient advocacy, and how we might try and make a difference for these patients.
I'd also like to again thank Backtable for their support in recording and producing this podcast and the Global Society of Rare Genitourinary Tumors for this opportunity to talk about this topic. If there are any clinicians or patients out there with rare genitourinary cancers that would like to find out more, then the Global Society of Rare Genitourinary Tumors is a good place to start.
Thank you again for your time, gentlemen. Thank you, Ben. Thank you.
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