Transcript of Being a Bladder Cancer Beacon of Hope with Karen Godfrey

June 29, 2022

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network or as many call it BCAN.

Rick Bangs:

Producers of this podcast. This podcast is sponsored by Seagen/Astellas, EMD Serono/Pfizer, Genentech and Merck. I am pleased to welcome today’s guest, Karen Godfrey. Karen is, if my math is correct, an 18-year survivor of muscle invasive bladder cancer with an Indiana pouch. She’s also an active member of the bladder cancer community, a strong supporter of, and contributor to, BCAN and has been a moderator for the BCAN Inspire Web Forum since 2007, which I believe was the beginning of the Inspire Web Forum for BCAN.

Rick Bangs:

In addition, she leads the Southwest Florida Bladder Cancer Support Group, and has also participated in several BCAN walks to end bladder cancer. My conversation with Karen is a three-part podcast. In this first part, Karen and I talk about her bladder cancer diagnosis in 2003, how she dealt with it, the lack of resources that were available at the time as well as what her life is like with an Indiana pouch.

Rick Bangs:

Karen, we’ve been friends for years, and I’m so excited to have you join me on our podcast today. And congratulations for just being voted the 2002 Bladder Cancer Advocacy Network, BCAN of Hope.

Karen Godfrey:

Thank you, Rick. I am so happy to be with you today. It’s always such a pleasure to talk telephone or in person or however we can get together. And I’m really eager to talk and tell you about patient advocacy and support and what it means to me and how I might encourage others to become active advocates too.

Rick Bangs:

I’m really looking forward to it. But before we talk about the significant contribution you’ve personally made and continue to make in sporting bladder cancer survivors, let’s talk about your bladder cancer journey, and I believe you were diagnosed in 2003. So what were your symptoms at that time and how did your diagnosis evolve?

Karen Godfrey:

I’m really one of those people that came to bladder cancer, totally unaware, no symptoms, no nothing until I was diagnosed with muscle invasive T2 bladder cancer. In the fall of 2003, I started having symptoms of UTI and burning and urgency. And my general practitioner gave me a couple of rounds of antibiotics that didn’t work. So I went to a urologist. After another round of antibiotics, we decided that it was time to do a cystoscopy. At that time my doctor was saying, “I’m looking at bladder cancer.”

Karen Godfrey:

I was totally blown away because I was a healthy lady and there wasn’t anything wrong with me, but a UTI. So let’s fix it. I came to bladder cancer totally ignorant of what it was. And not having any overt blood in my urine at any time, I had never, ever entertained an idea that I had a real problem.

Rick Bangs:

Yeah. And that’s unusual too. Right? Because you had no blood in your urine. You had urgency, you had frequency, and burning.

Karen Godfrey:

Right.

Rick Bangs:

Okay. So then you had… After this cytoscopy, you had a TURBT, right?

Karen Godfrey:

That’s right. And at that point, that’s when the pathology showed that I already was muscle invasive. You need to go back to 2003 and 2004 when there really weren’t standard protocols out there. So my doctor was telling me that what he wanted to do was take me directly to removal of my bladder. And that was a huge shock not knowing how you lived without a bladder. Basically, I just thought, “Okay, I guess I’m going to die young.”

Rick Bangs:

Right.

Karen Godfrey:

I learned through him about the choices of an Indiana pouch, neobladder, and the basic standard of the ileal conduit. I went to surgery, not knowing exactly what I would receive. At the time, my doctor thought that I had tumors too low to the urethra. So we were kind of ruling out a neo. So when I went into surgery, I knew I would either have an IP or an IC. My choice was the IP, if possible.

Rick Bangs:

Okay. So that’s the Indiana pouch.

Karen Godfrey:

Right.

Rick Bangs:

And you decided on that. Why did you want that versus the ileal conduit?

Karen Godfrey:

Well, again, I was pretty ignorant and there really wasn’t a lot out there to read and learn about. So I was relying on my surgeon to give me the information that I needed. I’ve said so many times I was such a fortunate person to have been sent to him because I learned later on that he probably was the only one in my small area that could have done all of the diversions. He was the one that believed that I would be a good candidate for the Indiana pouch. So that’s what I chose.

Rick Bangs:

Okay. So you chose that. So talk a little bit about what it’s like to live on a daily basis, day in, day out with an Indiana pouch. How does it work and when do you avoid?

Karen Godfrey:

Looking back, 18 years, I had to learn everything by trial and error. My home health nurse really had never seen one before, so she could do the things that would help me during my healing period. But as far as helping me learn the techniques and everything with the IP, I pretty much am self-taught.

Rick Bangs:

Wow. So you didn’t get any document? Because I got a document and I was only a couple years after you and I have a neobladder.And my institution was unusual in giving me like some handout for neobladders. You didn’t get any handout for the Indiana pouch.

Karen Godfrey:

No.

Rick Bangs:

That’s what I was afraid of. And you couldn’t go out to the internet and find lots of information either. Could you?

Karen Godfrey:

Nope. It was like, “You’re it girl.” Basically, my surgeon was my mentor. He understood how it worked and when I had questions, I mean, he really gave me his phone number. So he was the one I would call when I had a question.

Rick Bangs:

Wow.

Karen Godfrey:

It was six weeks out that I realized that I wasn’t fully emptying my bladder every time I cathed. And it was just by happenstance that I learned that. So that’s why down through the years, I have just felt such an urgency to help the, especially the Indiana pouch people to learn the little tips and tricks that they need to know as they’re healing.

Rick Bangs:

Right.

Karen Godfrey:

As far as living with it on a daily basis, in the beginning, you go through this teaching period of helping your new pouch learn to be a container and not a conduit. And after that period of time, you settle into catheterizing every three and a half to four hours. It’s a very simple, easy process. Once your healing is totally over and you settle into a routine, I mean, you go on with your life just like normal. Most of my friends, even my family now, they don’t ever even think about the way I go pee.

Karen Godfrey:

It’s just okay. And that’s what I usually tell them, “Hey, I got to go to the bathroom.” I can sleep through the night and that took probably maybe two to three years before that totally happened. But I go to bed like so 11:30, 12:00 at night is my last cathe. And 6:30, 7:00 in the morning is my first one. So I can usually do five to six at the most. I live pretty much like I did prior to my surgery, if I’m going to go out in public and do, I go to the bathroom before I leave the house and I don’t pay attention to how long it’s been since I last went.

Rick Bangs:

Right.

Karen Godfrey:

It’s just kind of like we told the kids when we were going to go shopping. “Okay, everybody go to the bathroom before we leave.”

Rick Bangs:

Right.

Karen Godfrey:

So it’s just a matter of living your daily life and basically it’s the same as it was before. I just void a little bit differently.

Rick Bangs:

Okay. So when you void, when you go to the bathroom, you need some equipment. Talk a little bit about that.

Karen Godfrey:

It’s really simple. You need a catheter, you need some lubrication and you need an antiseptic wipe. In this day of everybody being so careful, we’ve all got hand sanitizer with us all the time.

Rick Bangs:

Don’t we all.

Karen Godfrey:

That’s just kind of a given. I’ve always got a little packet of something in my purse or in my pocket or in a fanny pack, whatever the situation calls for, so that I’m never out somewhere without a supply. But it’s so simple to do. I mean, it’s not a hard task to have a tiny little Ziploc bag or even a see through Ziploc bag nowadays that you can stick in your purse. And rarely now that I go four hours, rarely do I ever use a bathroom out in public. I’m usually back home.

Rick Bangs:

Okay. So that makes sense. So now your diagnosis, it predates the founding of BCAN which was 2005. And John and Diane Quale as we both know started BCAN. So talk a little bit more, because it sounds pretty much like a desert. But what information and support was available to you at the time?

Karen Godfrey:

The only materials that I could find online were abstracts that professionals had written that I couldn’t understand.

Rick Bangs:

Okay.

Karen Godfrey:

And the American Cancer Society had a one sentence blurb in their cancer booklet, but it didn’t tell you anything other than bladder cancer might happen.

Rick Bangs:

Oh my gosh.

Karen Godfrey:

Right. So I was truly dependent on my surgeon to tell me what was going on. And even in the hospital, the urology floor that I was on had never seen Indiana pouch surgery. So I was like a year out before I realized that my doctor was the only guy in town that could have done it. He had trained in Chicago and I’m not sure if he’s a peer or was a student of Dr. Steinberg, but he had trained at the same time that Dr. Steinberg was there. So he had come from Chicago back to Florida where I lived and set up practice with, I would say a medium size practice, but it wasn’t a big medical center.

Rick Bangs:

Okay.

Karen Godfrey:

So I’m the textbook of having probably done everything wrong. No second opinions, no vetting of the doctors, no chemo prior to my surgery and I’m a success story. So I have just been so incredibly fortunate.

Rick Bangs:

Right. And you’ve done so much to help other people navigate this, that wouldn’t have had that opportunity had they not engaged with you. So let’s talk about connecting with BCAN because you were fairly early in getting to know and connecting with BCAN. So tell me how that happened and what was your very first role supporting BCAN?

Karen Godfrey:

Okay. I got a phone call one day from a lady named Allison Smith. She was a volunteer. As you know and as those of us that have really been advocates with BCAN for years when Diane and John started the foundation, it was a do it yourself thing. Diane was really it. This was like 2006, early 2006 when Alison called me. And soon after I talked to her, then I spoke to Diane and I became a member of what they call the volunteer leadership team.

Karen Godfrey:

That consisted of just a handful of us that were patients, that were becoming advocates. And really the first things that we considered in, what the foundation needed to do was to get the name out to the public and to the medical community that BCAN was on the scene. So how do you go about doing that? Well, we decided that we would divide up in our team and look for the 20 largest urology practices throughout the country and cold call them, and tell them that BCAN was a foundation there that they needed to know about.

Rick Bangs:

Wow.

Karen Godfrey:

So it was a real labor of intensity. We went out to UroToday. We went out to PubMed. We went out to all kinds of areas. We went to the major medical centers and looked up the doctors that were affiliated with them. It was just a matter of selling by cold call. And that was not fun because we learned early on that when you said, “I need to speak to your practice manager or something,” they would put you into voicemail.

Rick Bangs:

Yeah, of course.

Karen Godfrey:

And so then we decided, “Okay, this isn’t working because nobody would get back to us.” So we got a little bit smarter and we decided, “Okay, whoever we get on the line, if it’s the receptionist or whoever, we get an address of where we can mail them some information.” And that kind of helped us get a foothold. I don’t know. This may not be the time to delve into it, but that’s basically the same route that Diane and John took when it came to getting the doctors together.

Karen Godfrey:

They pretty much just went out and picked a set number of doctors and had them get together with them. We might talk about the little bit later when it comes to the think tank, but basically that’s how word got around. It took BCAN a long time to get to the point where when someone did a search on bladder cancer, that the name BCAN was out there. So all of it took time.

Rick Bangs:

Understandably so. Talk about some of the other roles you’ve had because you’ve done some other things that supported BCAN.

Karen Godfrey:

The first national bladder cancer day was in July of 2010. And at that time Claire Saxton had been brought on as a director and July was chosen. We weren’t really sure why, but it was. And it was the first national day. So by that time, we already had a support group down here and we had a luncheon. All of the volunteer leadership team that was scattered throughout the country were trying to do the same thing. And that’s when we started talking about support groups and opportunities and other ways that BCAN needed to move out and gather more people in more awareness.

Karen Godfrey:

I don’t know how many people understand that BCAN has a three-prong mission statement. Awareness of bladder cancer, support of the community, and means and ways of funding for research to end bladder cancer. So those three prongs needed to be balanced. And in the early stages, funding support was not really there, so the monies to do all of it that needed to be done were slow to come in.

Karen Godfrey:

By the time 2010 came in, you were already on board and you were working with BCAN and that’s when we decided, “Okay, July is not going to work for everybody.” And the month of may was chosen. So from, I think, 2011 on the month of May was the National Bladder Cancer Month for all fundraising. And most of the walks started probably in 2011.

Karen Godfrey:

Some of the other things that I’ve done, I’ve been privileged to be able to go to Washington DC and go to the Hill and speak to my representatives from Florida, promoting awareness and support. I have done health fairs in my local area to communities.

Karen Godfrey:

I participate in the Survivor to Survivor program that has been really rewarding for me because of the number of people that I’ve been able to reach through that. And then since 2008, I’ve been the facilitator for the local support group down here in Florida.

Rick Bangs:

So that’s all very impressive, but there’s one more role that I’m aware that you play, and it has very high visibility to an engagement with the bladder cancer community. So talk about BCAN Inspire, which is the online bladder cancer community. When you started and that was back in around 2007, I believe. When you started, how many members did the BCAN Inspire online community have?

Karen Godfrey:

Well, there again, in trying to figure out how do we reach people and let them know that BCAN is out there and that they’re the face of bladder cancer, it was determined that we really needed an online community. Funding was really still an issue. And so Diane and John were able to work with Inspire, which is a really fantastic platform that has helped so many different entities down through the years.

Rick Bangs:

Right.

Karen Godfrey:

But Inspire handles the nuts and bolts for BCAN in allowing BCAN to have a voice out there on the internet for support. We went online in November of 2007. And at that time, I volunteered to be the moderator for that group. I don’t know how long it took us in the first six months to get some people, but in the first two years we had 700 and then every year after that, we were doubling in our membership.

Rick Bangs:

Wow.

Karen Godfrey:

Until today, we have nearly 53,000 members that have joined the Inspire BCAN online community.

Rick Bangs:

Wow. I mean, that’s just amazing organic growth. So what’s the secret sauce here? How have you gone from… Literally you started with no members and now you’re at 50,000. So what’s the secret sauce?

Karen Godfrey:

Oh, dear. Sometimes the secret sauce takes a lot of stirring to make.

Rick Bangs:

And a good chef, I would point out.

Karen Godfrey:

BCAN knew that the way to grow an awareness was to find a way to reach patients. And so by offering this community, they were really becoming a more public face. We learned if people came into BCAN through a search engine, they believed that the Inspire BCAN online community was BCAN. It was like, “Oh, this is BCAN.” They didn’t realize that BCAN had its own website and that there were a lot of other resources out there for them that this was just BCAN’s online community.

Karen Godfrey:

So we had to figure out a way that we made sure that new members understood that BCAN was so much more than just the support community of an online community. In 2009 BCAN updated their guidelines of how members interacted with one another. And over the years, we’ve worked really well with Inspire because they’re basically the ones that are monitoring the site for us to make sure that outliers are not in there trying to put scams in or trying to reach out to members.

Karen Godfrey:

So that’s part of the moderation that we do is when new members come on and immediately have a little bit of a persona that maybe you are not sure they’re actually a bladder cancer patient. Then you alert Inspire to that and they have the options of figuring out who this particular person is. They are the ones that really keep the site clean and neat for support.

Karen Godfrey:

What we learned too, from some people joining, especially if they came in from the outside and not through BCAN is they thought it was kind of like a Blogspot or something similar to Facebook. And so they looked at their membership as the place for them to just post anything and everything. They really didn’t understand that our main purpose was to support the community and to offer the voices of experience of those people that had already had certain treatments or options and were living well with them. And the sharing that went on. And then uppermost too, was respecting people where they were in their journey.

Karen Godfrey:

So it was a matter of us growing as we went and learning as we went. And now, it’s really pretty smooth running as far as how the posts and the journals and the interaction with everybody goes.

Rick Bangs:

Awesome. Tell me what’s the goal for BCAN Inspire?

Karen Godfrey:

I think the goal for that is the same as it has always been to provide an avenue for support and learning, and reaching out. I would say in the last three years, maybe BCAN has really come to the forefront in offering a lot more posts from the staff that are alerting everybody to your webinars, your podcasts, to any opportunities of volunteering for surveys. So those things have been really great to see that the staff is out there doing that.

Karen Godfrey:

And for those of us that are group leaders and watching, it’s a matter of just still making sure that when people come in and they’re needing information or support, that there are people that are reaching out to them and providing that.

Rick Bangs:

Because as the BCAN theme line goes together, we’re better, right?

Karen Godfrey:

Yes, amen.

Rick Bangs:

That’s all the time we have today for part one of my three-part conversation with BCAN bladder cancer patient, advocate and 2002 BCAN of Hope award winner, Karen Godfrey. We’ll be back soon with part two of my chat with Karen and we’ll discuss the BCAN Inspire community that began with Karen and a few others, and now has more than 53,000 members. Karen shares her insights about how she got started and the value of having an online support community to turn to.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.