Rick Bangs

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.

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.

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.

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

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

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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 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.

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?

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 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.

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.

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.

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

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.

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.

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.

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 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.