Transcript of Karen’s Story: Bladder Cancer Nurse, Patient and Caregiver

April 6, 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 b-c-a-n dot o-r-g.

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, producers of this podcast. This podcast is sponsored by Merck, Bristol-Myers Squibb, and Genentech. I’m pleased to welcome today’s speaker, Karen Sachse. Karen works as an oncology nurse navigator at Inova Health System, is a bladder cancer survivor, and was the wife and caregiver of Roger Sachse, who passed away from bladder cancer in 2017. Karen is also an active member of the bladder cancer community, a strong supporter of and contributor to BCAN, and a bladder cancer research advocate in a variety of context, including pharma and the FDA. She’s also participated in a number of the BCAN walks to end bladder cancer. So Karen, thank you for joining me.

Karen Sachse:

Hello Rick, I am really excited to be here and I have to tell you I’m a huge fan of this podcast. I’ve listened to everyone and they are so informative and have kept me company on walks around a lake near my house. So thank you.

Rick Bangs:

Oh well, thank you. That’s nice to hear. So you have this really amazing story. And if I saw it in a movie, I would say it could never happen in real life. You’re an oncology nurse, you got bladder cancer, and then your husband got bladder cancer too. And the odds of this combination are incredibly small. So I want to walk through each of those contexts and let’s start with your role as an oncology nurse navigator. So what do you do in that role and why did you choose nursing as your career?

Karen Sachse:

Well, the second one I’ll address first. That’s actually pretty easy. I wanted to be a nurse ever since I could remember thinking about what I wanted to do. I was the co-lead of a medical careers club in high school. So even back then.

Rick Bangs:

Really?

Karen Sachse:

Yeah. And I never really strayed from that path and have had a really very rewarding career working inpatient roles, outpatient roles. I’ve done some hospice. And currently, as you said, I’m a nurse navigator for a community hospital system. And I work for a program called Life with Cancer. We provide patients and families support. Things like exercise programs, education, nutrition, individual counseling, and support groups, and all free of charge because of some generous community donations.

Rick Bangs:

I mean, you got the call early and you’re clearly you’ve met the call. So that’s a fabulous story. So what does the navigation involve? I think you’ve kind of hinted at it, but kind of walk me through as a patient. What would I see from your navigation role?

Karen Sachse:

Right. So as you know, being diagnosed and trying to get through to the next step and get through all the appointments and learning as much as you can about your disease and about treatments. And so my role is to support and help in that process. Might be guiding a patient and giving them the resources to maybe get a second opinion. It might be to help them get transportation to their doctor’s appointments, to their infusions, among just be support for them. If they have additional questions that their healthcare team could answer, but sometimes they’re a little harder to get ahold of than I am, and I provide that support.

Rick Bangs:

Such a critical need, and I’m sure your patients really appreciate it. So what’s your favorite part of this job and has anything changed since your diagnosis, in terms of your satisfaction with the work you do, or maybe the way that you work with patients?

Karen Sachse:

Well, I will say that the probably there’s so much in my role that is rewarding and I can guess that’s why I’m doing it. And it is a calling, but anytime I can make things a little bit easier for a patient or family is just, feels so good to me. Anytime that I have an opportunity to give back just with all of my experiences as patient and as a caregiver, there were so many times that I was so frustrated because I didn’t know who to turn to, where to go, and I’m in the field. So these patients that don’t have any experience with our healthcare system, need navigation.

Rick Bangs:

Oh yeah. I mean, I know I could have used these kind of services and it wasn’t exactly my first time on the medical rodeo, having had some issues with my parents and my brothers in the past, but still it’s overwhelming. So historically, did you have a relationship with bladder cancer survivors?

Karen Sachse:

I always liked to kind of tell the story about when I had treatment. When I first started my treatment, I really didn’t meet very many people. The offices where I was getting my care didn’t really, I mean, I knew nothing about BCAN at that point. Took me a while to find BCAN on my own, but through Dr. Google. So that was a good thing, but it was really not until I went to my first walk that I met women, that I had bladder cancer. In fact, I knew very little about the statistics for women with bladder cancer, until I met BCAN and went to my first walk.

Rick Bangs:

Wow. All right. So let’s go back in time. We’re going to go back to 2010, and you’ve been an oncology nurse for a number of years at that point, and you’ve had what were thought to be gynecologic issues. And I believe the thinking was this had been going on for two years, but you find out something else was going on. So what made you or your doctors dig deeper after two years? And what did they discover?

Karen Sachse:

Right, so I was postmenopausal and so many of my symptoms were attributed, like you said, to gynecologic issues. Oh, the bleeding it’s about once a month. And it’s really around the time when you were normally having your period, but they just kind of said, that’s what it was. Well, then when the bleeding was weekly, my primary care provider said, “I really need to look into this.” And I think she was thinking that I had some problem with my uterus. And so she sent me for a transvaginal sonogram, which identified that my female parts were fine, but oh, gosh, there’s this cauliflower mass, they called it. They didn’t call it a tumor. They called it a mass.

Karen Sachse:

And so she set me off back to the community urologist, who I had been seeing for two years for recurrent urinary tract infections. And even then Rick, here’s my primary care provider telling me I have a mass on my bladder, I’m a registered nurse. I should know that there’s problem here, Houston. And I went to that appointment alone and got the diagnosis. There was a cystoscopy done right in the office. And that’s how I learned that I had bladder cancer.

Rick Bangs:

So you got with a referral that quickly?

Karen Sachse:

Well, I was already established with that community urologist. So it was pretty easy for me to get in. And so then I had surgery, I had my first TURBT about three weeks afterward. And what the community system, the pathologist identified was that I had low grade disease and in 2010, everyone got treated, whether you get low grade or not. And so I went through two rounds of induction, BCG, but still had disease. And so I decided I need to do something else. And so I took myself to an NCI designated bladder cancer center, up the road from DC. And there they inserted a stent and changed, gave me Mitomycin C, and also the pathologist read my slides as high grade. And so that was eyeopening. And I’m just so thankful that I went. I’ve had three very small recurrences since then, and have been disease free since 2014.

Rick Bangs:

Okay, but I want to back you up here. So you got diagnosed with high grade, but somebody else had looked at that same pathology and thought you were low grade? Is that true?

Karen Sachse:

Yes. Yes, exactly. The very same slides.

Rick Bangs:

Very same slides.

Karen Sachse:

Very same slides. [crosstalk 00:11:35] Yes.

Rick Bangs:

Okay. [crosstalk 00:11:36] So what we’re reinforcing here is something that I didn’t know until I went to my first BCAN meeting, which is that second opinions on pathology are not only available, but they can be extremely helpful, right? So finding out that your high grade is a different path and different treatments than low grade, and sometimes there’s variations within the type of high grade. So it’s really important to get the right pathology because it determines what your treatments are, right?

Karen Sachse:

Absolutely, absolutely.

Rick Bangs:

Yeah. Okay, so good lesson learned there. So let’s talk about BCAN. You talked about, I think Dr. Google introduced you to BCAN, right?

Karen Sachse:

Right. [crosstalk 00:12:14]

Rick Bangs:

So when was that and how did it help you personally as a patient?

Karen Sachse:

So back in 2010, really BCAN was a pretty fledgling organization, but they had their amazing handbook. That was online and so that was really about what I needed. I downloaded that and learned so much about my individual situation. Even though, like I said, I’m a nurse and I’ve been in oncology for a long time, I had not really come across a lot of, in fact, I don’t think I’d taken care of not one bladder cancer patient.

Rick Bangs:

Hmm. So we’re talking about the, I don’t know what the current name is, but it used to be bladder cancer- [crosstalk 00:13:06]

Karen Sachse:

Bladder cancer basics, yeah.

Rick Bangs:

Right. And so we’re several generations later from the version that you saw.

Karen Sachse:

Right.

Rick Bangs:

And there’s also a caregiver one now, right?

Karen Sachse:

Yes, absolutely. Absolutely.

Rick Bangs:

Oh, those are huge needs. Okay. You find BCAN and then what?

Karen Sachse:

So I really didn’t get hugely involved in the beginning. I did several walks and then really my involvement came later when my husband was diagnosed with his cancer.

Rick Bangs:

Okay. So now we’re fast forwarding, we’ve gone 2010, you’re diagnosed and now it’s 2016 and your husband is diagnosed. Your two years, I believe, after your last treatment? [crosstalk 00:13:56]

Karen Sachse:

Right.

Rick Bangs:

So you’re two years out and now your husband, Roger has symptoms. So what symptoms did he have and what did you think was going on?

Karen Sachse:

Well, I mean, as everything, you look back and once you get the diagnosis and then you kind of put all the pieces together and I’d say probably about a year before his diagnosis, he was having some discomfort, pressure in what really he described in his groin area. And his primary care just kind of dismissed it and said, “Well, your prostate’s a little enlarged but your PSA is normal.” And in fact, at one point he just told him, “Oh, you’ve just got old man disease.”

Rick Bangs:

Well, okay. So here’s an interesting fact, when I was first having symptoms I was told I was getting older. I was 48, getting older and my father had prostate cancer. So that must be why I was having issues. So apparently this is kind of how it works.

Karen Sachse:

I that’s the thing, huh?

Rick Bangs:

Yeah, it’s a thing.

Karen Sachse:

And so then my husband was very athletic and did a lot of running and cycling and he came home from a run. It was in June and it was pretty hot out. And he came in and when he went to the bathroom, he told me, “I have blood in my urine.” And I will tell you the very last thing I thought about really was that here he is having cancer. I mean, because I just, there’s no away, there’s no way.

Rick Bangs:

Right, right.

Karen Sachse:

But we were able to get right in because of my connection to the treatment center and I mean, we were on the way there, we were thinking, oh it’s because he was dehydrated. That’s why he had blood.

Rick Bangs:

Right. Oh and I’ve heard this is a thing too. Because I’ve heard this story before about exercise, running, cycling, blood in the urine. It’s got to be the exercise, which that may be generally true. But this is another thing I’ve heard before, so all right. So you go in and then what?

Karen Sachse:

And so he had his cystoscopy and now getting the pathology report results. When the provider called, I thought that they’d made a mistake. I thought that they’d gotten the Sachse’s mixed up, really. I mean, that was the first thing that went through my mind that, oh my God, this can’t be happening.

Rick Bangs:

Right. And you’re at the NCI Cancer Center this time, right?

Karen Sachse:

Yes, yes, yes. Yeah. We didn’t start with the community this time. We went right for the good, the gold.

Rick Bangs:

Right, right.

Karen Sachse:

And so, yeah. And so then it turns out that his disease is muscle invasive, whereas as mine was not. And he needed to make all those decisions about what next and what to do.

Rick Bangs:

Right. Okay. So it’s muscle invasive, they’re recommending he have his bladder and his prostate removed. They’re going to remove some intestine, one to two feet, but it depends on which urinary diversion he’s going to select. And it’s always a difficult process to select. So as the caregiver, and that’s an incredibly difficult role, was it more or less difficult for you given your own history of the bladder cancer layered on top of the work that you do as an oncology nurse?

Karen Sachse:

Well, I will say we felt as a family that if anybody’s going to pull through this, it was going to be us. And if anybody was going to be in better shape to meet the challenges, it was us. All the information and all the resources that we had gathered for my treatment, I feel like paved the way for Roger’s journey. And it was a much better journey because of it.

Rick Bangs:

Right. Okay. So he’s got to make this decision on a diversion. So what was his thought process? What was your collective thought process and how did a decision get made?

Karen Sachse:

We knew that there were different options and the urologist did lay those out for us, but told us that we had to have chemotherapy first. So we had a while to decide, which was really in retrospect was such a good thing because he really gathered so much information and he went to BCAN. That was his first stop, was to listen and view the webinars on folks that had different diversions and then was able to hook into the Survivor 2 Survivor program. And that information of meeting people of all of the different diversions. In fact he spoke to several, not just one. He spoke, I think one of each diversion to get the life experience. As I said, my husband was very athletic and he really didn’t want to have an external diversion and really wanted the neobladder, but knew that that was a more complicated surgery that the recovery was going to be different and possibly have more complications, but that’s what he ended up choosing in the end.

Rick Bangs:

Okay. So Survivor 2 Survivor. So that’s where BCAN will match a survivor with is somebody who’s like them. So it sounds like they talked to somebody who had an Indiana Pouch as well as ileal conduit and neobladder? [crosstalk 00:20:40].

Karen Sachse:

Yes, yes. Yes, yes. Yes, he talked- [crosstalk 00:20:42]

Rick Bangs:

He talked all three? Oh, wow. [crosstalk 00:20:43]

Karen Sachse:

Yeah. Yeah, he explored everything and the Indiana Pouch at that point in time was kind of not as popular, starting not to be quite as popular, but he wanted to explore that as well. And we often talk about, because this is all phone contacts and he often would talk about, oh yeah, Mike from Cincinnati is calling or Jim from Detroit is calling. These are his bladder buddies.

Rick Bangs:

Yes, yes, yes. Oh, great. So he talked to these people and, what was kind of the key criteria for him and if you don’t mind my asking, what’s the key criteria for his selection of a diversion?

Karen Sachse:

I think that the idea that he would be able to urinate somewhat normally was really important to him. Yeah, I think that was really kind of the bottom line. And he knew that he could handle all of it, but he just felt that was right for him.

Rick Bangs:

Yeah. Yeah. Because then we all have different criteria in this selection and it’s not one size fits all. People have to think about what’s important to them and what each of the alternatives provide. So very difficult decision, but talking to other folks about what their lived experience, what’s it like to live with one of these? [crosstalk 00:22:23] So critical.

Karen Sachse:

I will also say that right after he finished his neoadjuvant chemotherapy, we attended our first patient summit. And that is where he met some of these people in person and met others that were so important to him really, to the end of his life.

Rick Bangs:

Wow. Wow. Okay so, you see patients and have any of your patients benefited from BCAN? Because I’m assuming at least at some point you come across bladder cancer patients.

Karen Sachse:

Oh my gosh, yes. I’m thrilled to be able to work with bladder cancer patients and was instrumental in starting a support group through my organization, my healthcare system.

Rick Bangs:

Oh, wow.

Karen Sachse:

Yeah. And I mean, BCAN is really one of the very first resources that I give them and they watch the podcast, the patient’s stories, and participate in the Survivor 2 Survivor program.

Rick Bangs:

Wow. That’s great. Okay so May, as you and I both know, is Bladder Cancer Awareness Month, and that’s when BCAN does its annual walks for bladder cancer. You’ve participated in several BCAN walks. So why was and is that important to you?

Karen Sachse:

I walk first and foremost in honor, my husband. We of course did it together when he was alive. And now that he’s a sweet angel looking out over me and all of us, he was so passionate about BCAN’s mission and even talked about how he wanted to be a volunteer. And actually before he died, he mentored someone else in their journey and they decided on a neobladder because of talking to my husband. And I walked in support of everyone with this diagnosis, that no one walks alone, and to celebrate that I’m now eight years free of the disease.

Rick Bangs:

That’s great. That’s great. And I’m assuming along the way through these walks, you’ve had an opportunity to meet other people like you, which is so important to us. Did that happen in the walk? Did you meet other women with non-muscle invasive bladder cancer?

Karen Sachse:

Right, right. That was actually the very first time that I met women. And as you know, when you go to so many of these urology offices, it’s filled with lots of men. I mean, those are just the statistics.

Rick Bangs:

Right, right. And the posters and the pictures. Yes. Yes. Okay. So do you have a favorite walk experience that you’d like to share?

Karen Sachse:

Two years ago, one of Roger’s friends who lives in New York came to walk with us on our team. And it turns out that her partner was diagnosed with bladder cancer. Muscle invasive. And so we were such wonderful support for each other and I was able to help her and get resources to her for herself and for her partner.

Rick Bangs:

Awesome. All right. So you and I both know the walks are BCAN’s major fundraising activity and as you’ve pointed out, it’s a great team building experience for the bladder cancer community and meeting people like you. So based on the different roles that you’ve played, and you’ve played a number of them in the bladder cancer community, and within the BCAN construct, you’re in a pretty unique position to communicate the value of BCAN. So talk to me about your favorite BCAN programs and support services in 2022. What excites you and why?

Karen Sachse:

Boy, that’s really hard, Rick. But I will tell you two things and not just because I’m on here with doing these podcasts, but I just find them so amazingly helpful. And it’s so great because you can listen to the podcast in the car, on a walk, going to the grocery store. And I just think that’s the really great addition to the repertoire of BCAN. But the, yeah. [crosstalk 00:27:21].

Rick Bangs:

Wow, thanks.

Karen Sachse:

But the other thing that I really am excited about, and I think that just got added earlier this year, is the bladder cancer by state.

Rick Bangs:

Oh yeah.

Karen Sachse:

Yes. And on that page are the NCI, the National Cancer Institute, designated bladder cancer centers. And so helpful to patients who are searching for that either to transfer their care or to get a second opinion. And then also clinical trials are listed there as well.

Rick Bangs:

Right. Yeah. And I think it also includes information on your government representatives as- [crosstalk 00:28:06]

Karen Sachse:

Yes. I believe so. [crosstalk 00:28:07]

Rick Bangs:

Yeah. So, okay. Cool. All right. So with all this interaction with BCAN, what do you think BCAN’s secret sauce is?

Karen Sachse:

Well I have to say, I think that it is because they have involved patients, patient advocates. They involve patient advocates in their clinical trials and sort of sometimes they’re the broker, kind of the bridge to connect patient advocates with physicians, with scientists to really help to tailor their protocols, their clinical trials. Does this make sense? Does this not make sense? Is this a good thing to ask? How should we ask it? Should we ask it in a different way? As well as all of their programs, they have patient advocates sitting on their boards, on their advisory committees, as well as they have patients reviewing their education materials. As myself as an educator, I just know how very, very important that is to be able to get the message out correctly.

Rick Bangs:

Yeah. I’m a huge fan because I don’t think there’s anybody that does it better. So there may be folks that do it as well, but I don’t think anybody that does it better. So some people on the call or on the podcast here may be thinking about joining a walk or they might even be thinking about leading one. So what advice do you have for them?

Karen Sachse:

I would tell them that the BCAN has made it so easy. They have an amazing app, the BCAN walk app, which allows you to post very easily on your social media. You can fundraise from the app. You can communicate with your team, solicit donations, and even send thank yous right through the app.

Rick Bangs:

Wow. Yeah, it’s really come a long way, and it kind of removes some of the barriers to even starting something like that. So that’s great. So Karen, I really want to thank you for your time today because you’ve given us such a great overview of your amazing and fascinating journey as an oncology nurse, a bladder cancer survivor, and as a caregiver. And we know that those are three incredibly important roles and you’ve helped us connect the annual BCAN walks to the value BCAN brings to the bladder cancer community with real examples from your own life. So really thank you for that. In case people wanted to get in touch with you, would you like to share an email address or a Twitter handle for them to contact you?

Karen Sachse:

Sure. I don’t have a Twitter handle, but I would be happy to share my email, which is Karen k-a-r-e-n dot Sachse s-a-c-h-s-e at Inova i-n-o-v-a dot org.

Rick Bangs:

Okay. Thanks. Just a reminder. If you’d like more and information about bladder cancer, you can contact the bladder cancer advocacy network at 1-8-8-8-9-0-1-2-2-2-6. That’s all the time we have today. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Karen.

Karen Sachse:

Ah, thanks Rick.

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 b-c-a-n dot o-r-g.