Transcript of “What is Pathology and What Does It Mean to Bladder Cancer Patients?”

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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 the Seagen/Astellas alliance and Genentech. I am pleased to welcome today’s guest, Dr. Matthew Mossanen. Dr. Mossanen completed his college and medical training at UCLA. He completed his urologic oncology fellowship at Brigham Women’s Hospital and Master General Hospital.

He has a master’s in public health from Harvard. He’s a faculty member at Brigham Women and Dana-Farber Institute, and one of his main clinical and research focuses is improving the quality of care for patients with bladder cancer.

Dr. Mossanen has been a 2016 BCAN John Quale Travel Fellow and a 2022 BCAN Young investigator awardee, the latter for work on smoking cessation. Dr. Mossanen, welcome. I’m so excited to have you join us on our podcast today.

Dr. Matthew Mossanen:

Well, thank you very much, Rick, for having me. This is a really great opportunity and I’m excited to chat with you today,

Rick Bangs:

As am I. So today we’re going to talk about pathology, which is such a critical part of any bladder cancer journey, and it’s something that I think you and I believe has not advanced to meet the needs of patients. So let’s start with some basic information. What is pathology and what does it tell you as a doctor and me as a patient?

Dr. Matthew Mossanen:

That’s a great question. I think that we’ll probably spend this entire hour just answering that single question. Pathology is the description of the tumor and it tells the doctor how to manage the tumor and it gives valuable information for the patient regarding their prognosis and their management plan. And often there are options.

So I like to think a little bit about the components in the pathology report. Is it okay if we kind of dive into those?

Rick Bangs:

Oh, please, please. I think that’s important. Those are important concepts.

Dr. Matthew Mossanen:

I usually start with just talking about the stage, which is kind of the depth of the tumor going into the wall and the deeper the tumor is sort of burrowing into the wall of the bladder, the higher the stage and it goes one, two, three, four.

The grade is sort of the way the cells appear, how abnormal they are. And you only get two options for bladder cancer, low grade or high grade. And the higher the grade, the more aggressive it is, the faster the cells might grow.

So we put those two things together. An analogy I really like to use that I know many surgeons use with their patients is to say, think of bladder cancer as a group of termites and they’re going into the wall of the bladder and a TA, a tumor is just sort of eating into the paint.

At tumor stage one, T1, the lamina propria is going into the drywall and a tumor stage two is going into the muscularis propria or the beams of the room. And the faster growing termites are high grade and slower growing termites are low grade. And it’s sort of a cheesy analogy, but it’s been really helpful to explain some of the components and make it a little bit more digestible.

There are some other aspects of the pathology report like variant histology when you have more rare types of bladder cancer and that can be very important. And I think those are sort of the key things that I wanted to talk about for that initial part of it.

And then there’s one last final thing to make it extra confusing for the patient. So you can get your TURBT or trans urethra section of bladder tumor biopsy report, which is a portion of the tumor that gets scraped out by the urologist, or you can get almost the final or complete pathology when the entire bladder is removed.

So there are a lot of different pathology reports along the bladder cancer journey. One of the questions that comes up often is can you just tell by looking at it what it is? And you might be able to make an educated guess. You could tell, for example, if you have a small superficial tumor or you could tell if you have a large invasive tumor, but we really don’t like to make any definitive recommendations until we actually have a bladder pathology report in front of us.

Rick Bangs:

Which is very similar to the termite damage, right, because you don’t know until you actually excavate.

Dr. Matthew Mossanen:

Ooh, you know what, I might add that to the analogy now. I like that. I like that. You’re right. Yeah, I mean you really don’t know till you get into the wall to know the extent of the damage. So yeah, I agree with you on that.

Rick Bangs:

So, now how are pathology and tumor profiling related? Or are they completely different?

Dr. Matthew Mossanen:

There are some opportunities to do tumor profiling so that you can direct therapy. This has been more helpful on advanced stage bladder cancer. It’s done often by the medical oncologist. The pathology report is the standard of care. This gives the foundation of how we manage things, but there are now an expanding array of other opportunities to better understand tumors and what they might respond to in the future.

So it’s always worth it to have that discussion. It’s not very commonly used for a low grade TA tumor, but for more advanced or metastatic disease, it’s often used.

Rick Bangs:

And the tumor profiling is not done by the pathologist, right?

Dr. Matthew Mossanen:

The tumor profiling is typically ordered by the medical oncologist in most of the cases. Where I work at Brigham Dana-Farber, the medical oncologists are usually responsible for ordering some of the sequencing and tumor profiling.

Rick Bangs:

So now we’ve got this pathologist report. How definitive is that report? And you kind of hinted at that a little bit earlier. And are the values clear-cut or is there some degree of judgment?

Dr. Matthew Mossanen:

Both. Fortunately, there’s always an expert behind the microscope, which is a pathologist interpreting these images, these pictures of cells and bladder walls and determining what they think is the depth of invasion or the grade of the cell or the growth rate of the abnormal … how abnormal do the cells look.

In the end, fortunately, pathologists are able to take their expertise and distill it down into a sentence and say how deep the tumor is going. There is some judgment involved because sometimes pictures are not always black and white and there’s shades of gray and they need to make that assessment.

One of the interesting things that often comes up in bladder cancer is the risk of under and over staging. So you might imagine if you’re taking a bladder biopsy of a tumor, you’re taking only a small piece of it while the tumor remains. So you might not be completely or entirely accurately staging it just due to the technical limitation of doing the biopsy.

And so oftentimes in bladder cancer, we will go back and do another biopsy just to complete the staging or to get more accurate staging, and we send that to the pathologist letting them know this is the second resection.

I think one of the key things when it comes to judgment and pathology reports is the experience of the pathologist. And a lot of times when patients get second opinions for bladder cancer, it’s not just from the surgeon or the medical oncologist or the radiation oncologist, it’s also from the pathologist rereading the biopsy, and from time to time they might interpret it differently than the outside pathologist.

Rick Bangs:

I remember Donna Hansel at a BCAN forum way back in 2009, it was my first exposure to BCAN, talking about getting second opinions for pathology, and it was surprising to me. I didn’t even think about that as an option.

Dr. Matthew Mossanen:

Absolutely. It’s essential. So we do it as a standard of care where I work. I think there are a group of pathologists we have that are the bladder cancer expert pathologists that review these things. And it’s part of the second opinion for bladder cancer management to confirm the diagnosis because there is some degree of subjectivity when you interpret these things.

But with time, with volume and experience, pathologists are able to make a definitive diagnosis by examining the tissue and being able to detect what they think is the diagnosis and the things like the grade and the depth of invasion.

Rick Bangs:

Which is fundamental to the treatment plan. So let’s assume the report that I’ve been provided is accurate, which is going to be the case the vast majority of the time. In your experience, how well is the pathology report communicated by the doctor and understood by the patient?

Dr. Matthew Mossanen:

Good question. It’s challenging. It’s challenging to explain a pathology report because it’s medical data, but you want to make it digestible and accessible to patients because it drives their management plan. And when a patient is told the words bladder cancer, they sometimes forget the things that you discuss with them, which is understandable.

Now, I think with electronic health records, most patients have looked up their pathology report, they’ve often done some degree of Googling and looking it up online. I always try to steer them towards BCAN rather than just random internet searches. But I think patients have usually made an effort and most of the time to understand their pathology report, and they have had some degree of discussion with their local urologists.

I’m often seeing second opinions, so patients are well informed, but there’s always something extra you can teach them or discuss with them about their pathology report. And it’s usually what their treatment options are. I think like many things like bedside manner, every clinician is a little different. So the way they communicate also varies.

Rick Bangs:

Sure. So BCAN created the patient survey network to solicit input from patients on research questions. And my recollection is that pathology made the list at one point. Talk to me about that.

Dr. Matthew Mossanen:

That’s a great point. The patient survey network has been a really valuable tool in getting some insight into what patients want to prioritize. And one of the research questions or topics of interest was pathology reports, because I think it’s really critical for patients to have a clear understanding of their pathology report.

And the readability of pathology reports can be tricky because there’s necessary medical terminology and medical language and the structure of the pathology report is a medical document makes it challenging to understand. But it’s essential that patients grasp some of the meaning and the key points so that they can be informed and understand what their diagnosis is and what their treatment options could be.

Rick Bangs:

And typically those reports are just text, right? It’s medical terms and text when I look at a pathology report.

Dr. Matthew Mossanen:

Yeah, it’s usually a bunch of words organized in a small paragraph. One of the challenging things is there are some key things that all pathology reports need to have, but the way they’re organized and the way they’re worded actually varies from hospital to hospital.

So you could have three pathology reports all with the same diagnosis, all with three different structures. So it can actually be quite confusing.

Rick Bangs:

So what are the key drivers that limit patients from having a clear understanding of their pathology?

Dr. Matthew Mossanen:

I think a lot of it is terminology that’s used. They might say stage one, they might say lamina propria. They might say non-invasive or invasive, invading the lamina propria, invading the muscularis propria. All of these things can have similar meaning and also very different meaning. And so it can be very confusing, the language, also the structure of the pathology report might be a bit confusing.

They might list components and say, present or absent. I think now most patients have access to the electronic health record to their pathology reports and many patients are often looking it up before they speak with the urologist.

Rick Bangs:

Oh, yeah.

Dr. Matthew Mossanen:

That can be helpful in many ways by letting patients get their hands on their information about their own pathology report. But it might also cause anxiety when patients might be looking up things and coming across information on the internet that may or may not necessarily relate to their case.

Rick Bangs:

I think we’ve established the need for something better. And I want to pivot to some of your work in this area, which as you know, I’m very excited about.

Dr. Matthew Mossanen:

Well, thanks Rick. I along with John Gore at the University of Washington, he’s been a mentor and a guide on this project and a very important part of it, we’ve been working on a patient-centered pathology report for people with bladder cancer.

We did a little bit of background work. We did sort of a review and found that there’s not much out there for patients at the time. This is a couple years ago, not a lot out there for patients trying to understand their pathology report.

We measured the sort of complexity of the language in the reports and found that often it’s written at a college level as far as the complexity of the words used. So we decided to use this information to draft a patient-centered version. And in order to do that, we ask patients and providers what they think are some of the key parts of a report.

And so, one of the key findings of what patients and providers and our work came to, to highlight is a narrative format where the pathology is almost a conversational piece of what’s being explained in sentences rather than just being listed almost like as a medical result.

And a key component is a picture, just a picture of the bladder wall. And in the version that we made, we used a figure from BCAN that they were nice enough to let us use and it has a picture of a tumor. And you just kind of see as the depth of invasion increases, the stage increases.

We also had patients sort of say, uniformly almost, what are the chances this will come back? And so we sort of added some language describing that in this sort of patient-centered version.

Rick Bangs:

I love that. I love the graphic piece and I love the fact that you’re guiding the patients to what does this mean to them? I think that’s just great. What advice do you have for patients regarding pathology?

Dr. Matthew Mossanen:

Well, I think that it’s, at the end of the day, I think it’s important to go over it with your urologist face-to-face or Zoom to Zoom, however it is. But I think it’s really tough to interpret that document, just looking up terms online.

So I think the first step is to sit down with your provider, go through it in detail, and make sure you understand what your diagnosis is. And from there, if you do have more questions, you can always get a second opinion, you can always meet again with your urologist.

But what I really do is I like to direct my patients to the BCAN website and I’ll write down exactly what they have. I’ll say, now you have low grade TA bladder cancer, you can look it up. These are the options. Or you have muscle invasive bladder cancer. These are the options.

And I find the website, the BCAN website, I don’t want to say … it is literally the most important resource for them online in my opinion. So I send my patients there. And I also think it’s sometimes helpful for patients to bring a buddy. Many patients will bring their significant other, their spouse, their child, even if it’s a neighbor, just having another set of ears can really be valuable.

Patients often record what I say, so they ask very nicely. They take their phone, they start recording the conversation, and they can sometimes listen to it again if they miss something because it’s a lot of information, it can be a long consultation.

Rick Bangs:

Oh yeah.

Dr. Matthew Mossanen:

I always give them a piece of paper where we’ve scribbled all our notes and all our drawings and they sort of take that with them almost like as a receipt or a little page of cliff notes that they can then use that to go look things up later. So those are some of the little things over time that I’ve started to put into practice.

Rick Bangs:

And now I want to want you to look into your crystal ball. What changes might we see in future pathology reports?

Dr. Matthew Mossanen:

Oh wow. That’s a great question. I think maybe having pathology be the same as in Boston as it is in New York, as it is in LA. So anybody with stage two muscle invasive urothelial cell carcinoma, the bladder has the same exact document no matter where they’re from.

But I think that’s something that is going to be really tough to get across. It’s a real complex document and there are lots of very intelligent people creating it. The pathologist is an essential stakeholder in this conversation. So I myself would be interested to hear what some pathologists think about it.

Another interesting thing in the future for pathology reports is maybe creating a sort of decoder or translator for pathology reports where you could enter your pathology report and a patient-centered version comes out automatically either through the electronic health record. That would be very exciting.

And there’s some work being done by John Gore to that end. Very exciting stuff. And then I think at the end of the day, despite all the excitement in the future of pathology reports to just be, I don’t know, old school for a second, it still just takes one urologist sitting with one patient face-to-face, and just kind of discussing what it means.

Because the bladder cancer itself hasn’t really changed. Our understanding of it has improved, but it’s still a terrible disease and it’s the reason why we’re here, right, to fight back and take care of our patients and to give them the best care we can. So many things will change, but at the end of the day, I think just leaning on your surgeon to help you get through it is key.

Rick Bangs:

You’re describing a future I definitely want to see happen. That sounds great. So Dr. Mossanen, and thank you for your time today. You’ve given us a better understanding of the importance of pathology and how to get the most out of this important tool as a bladder cancer survivor. In case people would like to get in touch with you, could you share your Twitter handle, so people can find you?

Dr. Matthew Mossanen:

Sure. @MattMossanen.

Rick Bangs:

Excellent.

Dr. Matthew Mossanen:

M-A-T-T, M-O-S-S-A-N-E-N.

Rick Bangs:

Okay, great. 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. Mossanen.

Dr. Matthew Mossanen:

Thank you.

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.