Transcript of How COVID Changed How Bladder Cancer Doctors and Patients Interact with Dr. Sima Porten

August 31, 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, producers of this podcast. This podcast is sponsored by Seagen/Astellas, EMD Serono/Pfizer, Genentech and Merck.

Rick Bangs:

I am pleased to welcome today’s guest Dr. Sima Porten. Dr. Porten received her undergraduate doctoral and public health degrees from Northwestern University. She completed her urology residency training at the University of California, San Francisco and her urologic oncology fellowship at MD Anderson Cancer Center. During her fellowship, she was awarded a BCAN John Quale Travel Fellowship for her research in bladder cancer.

Rick Bangs:

Currently she is a urologic oncologist at the UCSF Helen Diller Family Comprehensive Cancer Center. Dr. Porten’s research interests focus mainly on the diagnosis and management of bladder and upper tract cancers. She is a member of the BCAN Scientific Advisory Board, and she just chaired the 2022 BCAN Bladder Cancer Think-tank Dr. Porten, welcome and congratulations on a terrific think-tank.

Dr. Sima Porten:

Thank you, Rick. And thanks for having me here today. I think this is an important topic and despite it being many years since the beginning of the pandemic, I think it’s still affecting us and everyone around us today.

Rick Bangs:

Yeah, I agree. I agree. This is our third podcast on COVID. So COVID’s changed so many lives as you know, and impacted the way we live our daily lives, not only as patients, but also as medical providers. So I was hoping you could talk about the impacts to bladder cancer patients at UCSF and what you may know about what’s happened in other clinics during the pandemic, what were their experiences?

Dr. Sima Porten:

Yeah, I would say that it definitely has had an impact for both patients and physicians and medical providers. I think there’s a couple of themes and the big overreaching theme is delays, right? For patients, there was many delays in diagnosis, delays in treatment, and that was partly because people are trying to do the right thing, especially early in the pandemic when there was a lot of fear, it was unknown how to bring patients in safely to have their surveillance cystoscopies, to undergo a workup for microscopic or gross hematuria, to basically just come in for medical care in general.

Dr. Sima Porten:

And then on the flip side, it was difficult to figure out from the provider perspective, how to get those patients in safely to be able to see in triage folks, as well as if you found something, being able to schedule things into the operating room, because much of our infrastructure in hospitals were being significantly impacted by an influx of COVID patients.

Dr. Sima Porten:

And so all of these things really compounded to create a really stressful situation for everyone. There was also a sense of could you bring someone in and do everything in one travel trip or visit to the clinic. Not everybody lives close to medical care, and that became also very difficult to figure out how to get places and even get treatment in a timely fashion and potentially as a one large bundle. And so I think that was another kind of aspect of that in terms of reluctance to travel.

Rick Bangs:

And also patients weren’t able to bring a visitor when they were coming for their appointment or their hospital stay. Right?

Dr. Sima Porten:

Correct. And that was also especially impactful, particularly when you were getting a diagnosis of a cancer and going through treatment options. It is really hard to hear past the first five minutes when someone tells you had cancer. I would say that was probably one of the biggest struggles that we saw in that you couldn’t have your support person or your other set of ears there with you. They could be on a speaker phone or on FaceTime or something to that degree, but it’s not the same. And so I think that was really tough for patients.

Rick Bangs:

And I bet you saw a lot more of that, right? A lot more people using their phone to keep their support network in the room, but not physically in the room.

Dr. Sima Porten:

Correct. Correct. And I mean, it’s better than nothing, but it is that physical presence. I think that was another really big theme, is that how much just we, as people rely on that for many things, for support, for that personal connection and interaction. As a medical provider, too, my relationship is with the patients, but you get to know your patients a lot better by also getting to know their family, their friends, their support people, they bring in a different aspect of, and different side of your patient to the conversation. And that can really help you do the right thing for that specific person.

Dr. Sima Porten:

When you can know someone better from all different aspects. And I think that was also pretty large impact that you wouldn’t have necessarily realized because this was a pretty large change to everyone’s daily lives and how they interact with people.

Dr. Sima Porten:

The one other part that I saw that was also very particularly difficult is when a patient was undergoing a very large operation within a hospital stay and they had to do that alone. And although many of our team would come by and spend extra time and our nurses and anyone who is able to be in the hospital would try to fill that gap, again, it’s still not the same is having your support person right there with you after a large surgery or a difficult hospital recovery and I think that was really difficult for patients as well.

Rick Bangs:

Yeah. So talk a little bit more because you kind of hinted at it, but talk a little bit more about the impact on the clinician side, the doctors, the nurses who are already pretty busy and I think there’s lots of turnover, there’s things happening on the clinician side. How did the pandemic impact them?

Dr. Sima Porten:

The pandemic added to the already busy, hectic, stressful kind of milieu of busy hospital or clinic. And I think it increased the rate of burnout because also you’ve got the work side of you and there you were seeing your patients go through stressful situations. It became more difficult just to do your job on a day to day basis. But I would say that many also were kind of on the flip side, dealing with the impacts of COVID from a personal aspect in their other lives as a spouse, a parent, caretaker.

Dr. Sima Porten:

Many people, particularly those with children had a pretty difficult time trying to figure out, well, how do I do this remote school as well as come to work and be really present and be able to take care of patients. So I think people were burning the candle at both ends and that’s led to a lot of burnout as well as a lot of people leaving medicine.

Dr. Sima Porten:

And currently that’s impacting us in terms of staffing shortages that are making it very difficult to run the operating room and to be able to take care of patients. I think you don’t realize even being a physician for many years, the number of people it takes to have successful outcomes, you definitely have your surgeon and their team and the anesthesiologist, but you have a whole group of nurses, staff, folks who sterilize equipment, clean the room, order supplies. From every single point and aspect of how a hospital and clinic runs has been impacted by COVID in terms of just massive shortages, whether it’s people, supply chain, equipment, all of it’s been affected across the board and that’s led to a lot of added stress and definitely burnout.

Rick Bangs:

Yeah. It’s definitely rocked our world. What about you personally? How did the pandemic impact you?

Dr. Sima Porten:

Yeah, I would say I’m a mom of two kids in elementary school and now middle school since it’s been a few years. So that was a difficult thing to try to figure out in terms of, well, how do we take care of our kids at home, but still meet my goal and joy and also commitment to our patients in terms of coming in and taking care of patients who had bladder cancer. We were a bit, I think luckier than some other areas of the country in that bladder cancer was kind of put into the top tier, meaning I was still able to schedule operations, see patients in clinic for their cystoscopies. Although we did alter our surveillance paradigm a little bit there. And I’ll talk about that in a second, but it was definitely a struggle in the beginning. I’m very lucky. I have a very supportive partner who was able to transition completely to remote work and so that really took a lot of the stress off of well, how do I manage home situation and work situation at the same time.

Dr. Sima Porten:

I wanted to touch a little bit upon our change in our surveillance paradigm.

Rick Bangs:

Please.

Dr. Sima Porten:

In terms of figuring out how to bring patients who were at the highest risk for their cystoscopies in and then hopefully keep others safe at home and we really made use of a home urine test at that time. And this was from the group at Cxbladder and we were able to use one of their urine based tests that they actually had moved into the ability of home testing and had recently come out with data with the notion that if you had a favorable gene expression in the urine, you could safely skip that cystoscopy and then come in at your next cystoscopy. And this was a pretty narrow group of patients this was reserved for, but it definitely led us be able to bring those in who really needed to come in and also keep people safe at home. And so that was one of the great aspects of that.

Dr. Sima Porten:

Another thing had come to mind regarding that in terms of how the pandemic impacted me personally, it was also kind of a bit lonely at work when you’re kind of the only one there. And I would say that again, it really brought up how much we rely on those personal connections with not only patients, but also colleagues and I would say that was also illuminating in terms of the impact of COVID in sort of narrowing a lot of those relationships.

Rick Bangs:

So the Cxbladder test, you talked about it being a home test. So people would pick up the kit, they take it home, get a urine and bring it back or send it in?

Dr. Sima Porten:

So it actually would be sent to them in the mail by post so they didn’t even have to come in to pick it up. It could be sent to them completely at home and be done at home. It’s fairly easy in terms of the urine collection and then it is sent in the post back. And in that way, it allowed about 30 to 40% of our patients who were on a regular cystoscopy regimen to be able to safely skip that cystoscopy, particularly in the very early days of the pandemic when there was a lot of uncertainty. And I would say some patients also related how much easier it was for them to be able to do this test at home versus drive four hours over to UCSF pay for parking, come in for the visit and then drive all the way back home. It’s a whole day affair.

Dr. Sima Porten:

So in the end, I mean, there was definitely some beacons of light during the pandemic and it sort of pushed us to really think outside the box and use these assays that have been available to us, but were still taking a while to, in terms of uptake across medical practices. So I would say yes, there was a lot of stress and downsides to COVID, but there was a couple beacons of light there.

Rick Bangs:

All right. So let’s talk about some of those beacons, because COVID had so many negatives, but there are some positives and you’re touching on one right there and let’s start with one that I think many patients would be familiar with, which is consultation with their doctor or medical team.

Rick Bangs:

So many patients, I know I di, my mother did, participated in phone or web conference calls with their doctor during COVID and I think that’s commonly referred to as telemedicine. So can you talk about what telemedicine is and whether it’s different from telehealth, because I hear both terms being used and why did that not get a lot of use before?

Dr. Sima Porten:

Yes. Prior to COVID telemedicine or telehealth, I think you’re right, the terms are completely exchangeable. It had limited use for a few reasons. One of the large reasons is it was not reimbursed in terms of physician’s time. And I think that’s probably the largest reason. Another reason was there was a pretty large push in terms of patient data safety, we call it HIPAA compliance, but around keeping things very secure and there was not many secure platforms to use at that time and some of the platforms that were very secure were cumbersome.

Dr. Sima Porten:

And so some large groups such as the Kaiser system had some infrastructure and already were using some aspects of telemedicine across their platforms, but it wasn’t anything that was widely available to everybody to use. And again, it was not reimbursable. So I think that led to a lot of limited use pre-COVID. When COVID happened, these visits then became able to be reimbursed and I think opened up a whole aspect in terms of access to care with physicians. So you could do a video visit as a first meet with a physician in a specific subspecialty or maybe even you have a disease process that is unique and there’s four doctors across the United States who kind of deal with that. It allowed for, I think those meetings and that aspect of care, which I think was really great in terms of expanding access.

Dr. Sima Porten:

Again, it also minimizes travel time and cost to the patient as everybody’s getting back to some form of hybrid coming into work and also some remote work, you forget how much time it takes for patients to come in and see their physicians and I would say that it’s not just time, but it’s money and it’s money lost from time you have to take off of work as well as the cost of travel, parking, all of those small things that you forget.

Dr. Sima Porten:

So I would say that it’s been a really great way to still connect with patients and minimize some of those impacts. It doesn’t get rid of the need for an in person visit in certain situations but I think then it allows for you to have a meeting with a physician, figure out a treatment plan and if an in person visit is necessary, then you can always still accomplish that older aspect of medicine. I don’t think it will replace that in person meeting and contact completely but I think it’s really opened up many, many doors for patients in terms of access.

Rick Bangs:

Because certainly you still need to do some examination. So that’s not going to substitute for that until we get this kind of Star Trek solution. So let’s talk about this specifically in the bladder cancer context. So maybe talk a little bit, how did you use telemedicine?

Dr. Sima Porten:

Yeah, I used it mainly for reviewing of results. In the example that we talked about before with the Cxbladder test, it was then easy to do a quick video visit to talk about the results and then make a full treatment plan for the future based on those results, like okay you need to come in for your cystoscopy or all right. We can push this out another three months, let’s get that scheduled. So it allowed for that in a pretty nimble and in and quick way and I think patients like that aspect of it.

Dr. Sima Porten:

For new patient visits or consults, it was a way to look over someone’s medical record, talk to them about treatment plans, what we think needed to happen. If I was planning a large surgery on somewhat, we always brought that person then in person for an examination prior to a big operation, but it at least allowed us to get started on things quickly and then used those in person slots that we were allocated because they were minimizing the number of people coming in during the pandemic, efficiently.

Dr. Sima Porten:

I think the other thing that was really great is, many people had their support people from around the country be able to Zoom in and join in the visits. And so you still were able to have those second set of ears, your support structure and folks that were important to you to be able to participate in the visit, listen in, ask questions. And from that aspect, it was nice meeting everyone’s families. It was nice seeing people’s pets and getting to know them better in that way and so you got to always find the positive in this new way of living that works.

Rick Bangs:

Yeah. Because it enabled some of those connections that you were talking about earlier in which you are missing. So do you think there’s anything that might take us backward to this pre-COVID era, which seems so long ago where we didn’t have telemedicine or do you think telemedicine’s here to stay?

Dr. Sima Porten:

I think telemedicine’s here to stay, but I do foresee potential restrictions and that has entirely to do with how the policy aspect or the insurance coverage aspect plays out. And what will be mandated primarily starting with Medicare as most insurance companies will follow that. And so I’m hoping that our government and the folks that make those decisions will see the benefit of telemedicine and provide an aspect to still keep it as a tool or component of how we deliver care.

Rick Bangs:

Well, we hope some of our payers are listening to this conversation. So during the pandemic patients may have received tests that were performed at home that historically would’ve gone to the doctor’s office and you gave a great example with Cxbladder. So are there some other examples that might be relevant to the bladder cancer community?

Dr. Sima Porten:

The other big at home service that we saw was home blood draws and the kind of reinvigoration of some of the remote health clinics. And I would say that was the other really great thing to see is that people were paying attention to the benefit of at home testing or better access to some of these other common tests and so we made use of some of the at home blood draws for patients in terms of just getting your routine labs that you need before surgery.

Dr. Sima Porten:

There’s a few other blood draw tests out on the market for some of our patients with more advanced disease, primarily the Signatera test that looks at circulating DNA and they started offering at home or mobile blood draws as well. And so I saw some of my patients who I share with our medical oncologist making use of that option. In terms of other at home testing for the bladder cancer community, of course, many of these genetic testing companies launch the ability for at home test. Personally over here at UCSF are genetic counselors are fantastic actually, made use of telemedicine and then would send the saliva swab test to patients at home to be able to mail in too. And so that aspect of cancer care that we provided was still able to continue. And so those are the specific examples that I can think of in terms of relevance for our bladder cancer patients.

Rick Bangs:

Great. Those are great examples. So during COVID I think we learned a lot or relearned a lot. So for example, I think we learned or relearned how to wash our hands very well. And we learned about wearing masks and how to do that.

Rick Bangs:

So these are things that are critically important for patients with bladder cancer who are undergoing treatment now, particularly since it may compromise their immune systems. So do you think these are habits that are a temporary change or do you think patients are going to incorporate this into their daily routines going forward?

Dr. Sima Porten:

I think some of these habits will be incorporated into daily routines. I think the hand washing thing’s important. I even harp on my kids a lot about that. In terms of masks, I think people enjoyed not getting sick. I do think for others, it was difficult to have masks on all the time, particularly those who are a little bit hard of hearing and utilize lip reading a little bit to be able to participate in conversations. And so in terms of the mask aspect of it, I feel like it will be a pretty personal decision, but I think it destigmatized mask wearing in general. And so I’m not sure how many will still continue to wear masks and I think that would really depend upon personal preference and also what local mandates are.

Rick Bangs:

Sure. So COVID raised awareness about different outcomes in medical care for all too many people in the United States, people in the bladder cancer field, like your colleague, Dr. Sam Washington at UCSF have studied this problem and at the think-tank, he led a panel about mobilizing stakeholders and allies for health equity and bladder cancer. What disparities do you see in bladder cancer diagnosis and treatment and how do these factors impact patient outcomes?

Dr. Sima Porten:

Yeah, I think that definitely disparities exist across the United States and similar to the different outcomes and medical care during COVID in parallel patients with bladder cancer kind of experience the same disparities. In particular, there’s a few ways to look at it. So you can look at it based on socioeconomic status or race or even age. And based on those three aspects, we know that there are disparities in terms of access to local care in the community barriers to even receiving care and that could just be from not having any physician within a 40 mile radius who has expertise in the diagnosis that you need help with.

Dr. Sima Porten:

And so you sort see barriers to access there. Once you get access sometimes particularly for older adults, existing comorbid medical conditions, such as heart issues, lung issues can affect what sort of treatment can even be given in terms of what the body can take.

Dr. Sima Porten:

And then you can also look at differences in diagnosis. So in particular, what that makes me think of is in women many times the same symptoms that alert you to being worried about bladder cancer are also seen in urinary tract infections and many times, and this is because women are more prone to urinary tract infections than men, the symptoms that are experiencing will be attributed to a UTI because that’s very common and then bladder cancer will be missed. And so there’s a lot of different aspects among this continuum that leads to disparities in diagnosis and treatment.

Rick Bangs:

I think a lot of people learn because I hear a lot more about it in the research patient advocate side and I hear it from friends and family, it just raised the consciousness that not everybody has the same ability to get treatment and not everybody gets the same results. So how do you think that awareness generated by COVID has changed the landscape?

Dr. Sima Porten:

I think that over here, particularly at UCSF it’s reinvigorated our commitment to supporting diversity, equity and inclusion at both patient level and then workforce levels. So what does that mean? Many of our community action groups were able to find a collective enemy with COVID and that created an infrastructure in terms of bridging the gap between patients and access to care, whether that it was access to physicians, to medications, to vaccinations.

Dr. Sima Porten:

And so from that infrastructure level, many are foreseeing in the future how we could use that momentum to improve outcomes in other aspects of healthcare, whether it is bladder cancer or cardiovascular care or diabetes care. And so many of the same things with telemedicine, with at home testing, with remote monitoring can be used not just for treatment and diagnosis and prevention of COVID, but also to improve care across the board.

Dr. Sima Porten:

And so from a patient level, UCSF has multiple initiatives using this infrastructure to help improve patient outcomes. When you look at it at a workforce level too, it really illuminated the aspect that our workforce needs to more accurately represent our patient population as well. And so this also on the flip end, reinvigorated all these initiatives and commitments in supporting growth in that aspect as well.

Rick Bangs:

Yeah, I see more walking the talk now, which is really nice to see. And so speaking of that, I want to talk a little bit about clinical trials because it’s a space that I do a lot of work in. Patient advocates for years have argued about some things that needed to change and COVID allowed some of these changes, which was really exciting. So you’ve already kind of hinted at some of them, for example, the telemedicine piece, but can you talk from a clinical trials perspective what are some of the changes that COVID allowed?

Dr. Sima Porten:

I think it got the whole clinical trial stakeholders and those that design and develop it to again, think out of the box and relax a little on some of the rigid requirements. Before it required in person visits, you had to come to the center that was leading the trial to even participate and there was a lot of requirements that I think COVID sort of showed were maybe not necessarily in the best interest of the patient. And so what was opened up in terms of the clinical trial aspects was again, use of having telemedicine. So being able to do monitoring visits remotely. So that was amazing because you now weren’t coming to the hospital like it was your second job, multiple times to be monitored if you decided to participate in a clinical trial. So I think that was great.

Dr. Sima Porten:

Our consenting process changed, meaning we were able to do electronic consents. So I think that opened up a lot for patients. They were able to actually take it, read it, look at it over with family members and then be able to sign that remotely. Or our agents could be sent to your home. You didn’t have to come in and if there was an aspect of the trial where somebody had to watch you swallow a pill, you could do that over telemedicine.

Dr. Sima Porten:

Well, I mean some of these trials were designed, you look back on it and you wonder, you’re like, wow, how did patients do this beforehand? Kind of hope it opened your eyes to that. I think the other big thing was allowing care to be administered at a local facility or hospital. So I think that was also a big thing and hopefully that will carry on is collaborations between many of our community centers and academic medical centers because I think that is in the best interest for patients. So I would say that it did change how clinical trials are viewed and run and perhaps that will be a better path forward in the future.

Rick Bangs:

Yeah. Let’s hope these changes are permanent. So you just chaired the BCAN Bladder Cancer Think-tank and it was a great session and it was in person for the first time in three years. So given today’s topics, what are some of the key takeaways for you?

Dr. Sima Porten:

I think I did not realize how much I missed seeing my colleagues and also interacting with our patient advocates. And they’re a really important part of BCAN and really set the tone and intent of what BCAN is all about. Even in our think-tank and scientific proceedings, it’s about helping our patients. And I think that in person connection was sorely missed.

Dr. Sima Porten:

It was also a reminder that although having that Zoom aspect to many of our scientific and medical meetings, that there are still some things that are missed from not being in person and I think that it allows those in between conversations, these great synergies. You could just feel the excitement and you can almost hear the wheel turning in people’s minds as they were having these conversations that led to more robust networking.

Dr. Sima Porten:

The meeting started out with a patient voice panel, which I think was extremely powerful for everyone, especially being away for three years and it really centered everyone on what the core mission is. So I would say that it was just re-energizing in many ways.

Rick Bangs:

Yeah, you did a great job, so appreciate your efforts there. So I want to thank you for your time today. You’ve provided a really balanced perspective on the COVID pandemic and the real possibility of having some very positive outcomes from it. For more information on this topic, please visit the BCAN site at BCAN.org and search for COVID.

Rick Bangs:

In case people would like to get in touch with you. Could you share your Twitter handle so people can find you.

Dr. Sima Porten:

Sure. It’s an easy one. It is @SimaPorten, all one word and my full name. So feel free to reach out.

Rick Bangs:

Okay. So that would be S-I-M-A P-O-R-T-E-N. Right?

Dr. Sima Porten:

Correct.

Rick Bangs:

Good. All right. Just a reminder. If you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Thanks for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Porten.

Dr. Sima Porten:

Thanks for having me.

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.