Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
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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.
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