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Physicians treating patients with Ewing sarcoma get a chance to discuss challenging cases with experts from Cleveland Clinic, Cleveland Clinic Children's and other leading cancer centers throughout the country in a new National Ewing Sarcoma Tumor Board, led by Matteo Trucco, MD, a pediatric hematologist oncologist at Cleveland Clinic Children’s. Dr. Trucco joins the Cancer Advances podcast to talk about how the tumor board started, what to expect and how you can get involved.

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National Ewing Sarcoma Tumor Board Connects Experts

Podcast Transcript

Dale Shepard, MD, PhD: Cancer Advances, a Cleveland Clinic podcast for medical professionals, exploring the latest innovative research and clinical advances in the field of oncology. Thank you for joining us for another episode of Cancer Advances. I'm your host, Dr. Dale Shepherd, a medical oncologists here at Cleveland Clinic overseeing our Taussig Phase I and Sarcoma programs. Today I'm happy to be joined by Dr. Matteo Trucco, Director of the Children's Cancer Innovative Therapy program at Cleveland Clinic Children's. He's here today to talk to us about the National Ewing Sarcoma Tumor Board.

Welcome, Matteo. You've been a guest here on our podcast in the past, and maybe you could remind us what your role is here at Cleveland Clinic.

Matteo Trucco, MD: Thank you, Dale. I'm basically the Dale Shepard on the pediatric side. I run the clinical trials program in pediatric oncology, also specialize in sarcomas that affect children, adolescents, and young adults.

Dale Shepard, MD, PhD: We're going to talk about this National Ewing Sarcoma Tumor Board. Tell us a little bit about what that is. Maybe we could start, we have a diverse group here, what is a tumor board? Let's just start very basic.

Matteo Trucco, MD: A tumor board is basically a meeting of various specialties that are involved in taking care of patients with cancer. It takes a village. So everything from medical or pediatric oncologists, radiation specialists, surgeons of various sorts, and also the radiologists that read scans, the pathologists that will look at the tumor tissue under the microscope to tell us exactly what tumor it is, and nowadays also understanding some of the molecular drivers of those tumors.

All those people meet either in a room back in the day or, in this case, and during the pandemic, virtually, to discuss these various cases in each lens or expertise to come up with the best plan for that specific patient.

Dale Shepard, MD, PhD: How did this start?

Matteo Trucco, MD: This all started actually, it was from a foundation, a family that had an interest in Ewing sarcoma and came to members of our group saying, "Hey, could you guys somehow organize things so that you guys and other sarcoma centers in the country can share your expertise on Ewing sarcoma with other providers that may not have as much experience, and have a meeting of the minds of experts in this field. More people thinking about cases together can probably come up with better treatments." So it kind of started as an idea, again, prompted by the patient community. And we reached out to colleagues throughout the country at the various other sarcoma centers that specialize in Ewing sarcoma, and got about a dozen people internally and another dozen externally from the Cleveland Clinic that said, "Yeah, let's make this happen."

We then invited pretty much anyone we could think of who had an interest in Ewing sarcoma, or would be considered an expert in Ewing sarcoma, and invited them to participate. People submit cases of complicated cases, things that aren't just straightforward. We had upwards of 80 people on our first meeting. I don't have the total, but I think it was even higher our second meeting, and discussed some really interesting cases. And I think really everyone coming together lended some great insight and different ways of thinking about the cases that were presented.

Dale Shepard, MD, PhD: Again, just so we can educate people on part of this, Ewing sarcoma, what is it? Why Ewing sarcoma? This is a pretty rare tumor. Maybe you can give us a little background on why Ewing sarcoma may be particularly well-suited for something like this.

Matteo Trucco, MD: Ewing sarcoma is the second most common bone tumor that we see, in pediatrics, at least. It kind of spans from school-age kids all the way up to people in their twenties, kind of rare beyond 30 years old. But there's only a few hundred cases of Ewing sarcoma in the US every year. So few people see enough Ewing sarcomas to really have an expertise on it. While the upfront therapy is pretty standard, it's five drugs that we've been using for at least the last 20, 30 years. After that upfront therapy, when someone relapses, or depending on where the tumor is, that's where things get a little trickier and require some expertise, some people with more experience in dealing with this specific tumor, be it from a radiation standpoint, be it from a surgical standpoint, or a medical standpoint.

One of the cases that was presented recently was a tumor that arose near the spine. One of the docs in Michigan, who was presenting the case, asked has anyone had any experience with giving intrathecal chemotherapy for Ewing sarcomas that arise around the spine. Just so happened that that several people had given Topotecan intrathecally for Ewing sarcoma, but after discussing the case and reviewing it, we actually all didn't think that it was indicated in this specific case. Those are the kind of not straightforward approaches to Ewing sarcoma that comes up during these meetings.

Dale Shepard, MD, PhD: I guess not only maybe a discussion of a treatment plan, but is the goal also to maybe identify local specialists who can perform a particular procedure like a surgery or radiation? Is that also one of the goals?

Matteo Trucco, MD: Yeah, absolutely. One of the goals is to identify local experts that can help out. Again, we have surgeons and radiation specialists from across the country, from California to Massachusetts. Not only that, but also clinical trials that may be available throughout the country closer to the specific patient, or maybe if it's across the country, but it's a very promising trial, that might be a great option for that patient. This is a venue, because most of the people running those trials are participating in this tumor board, so that was another hope for this tumor board to just help the awareness of all the trials that are out there.

As you know, Dale, we both run clinical trials, and we try to stay abreast of all the clinical trials out there, but it's nearly impossible. For something as rare as Ewing sarcoma, you would really want to find the best treatment and the best clinical trial for a patient, and this is a venue for sharing that expertise and that knowledge.

Dale Shepard, MD, PhD: And particularly with rare tumors like Ewing sarcoma, sarcomas in general, other rare tumors, having the adequate path review is huge. Is there a mechanism by which maybe a local community doc that might be interested in presenting a case can have either imaging reviewed or pathology review? Is that something that is a possibility? How are we negotiating that?

Matteo Trucco, MD: It's a little tricky, because getting pathology slides reviewed require shipping the actual slides to our pathologist. But what we did enable anyone submitting a case to do is specify, listen, we want a sarcoma pathologist expert to be part of the meeting, or we want sarcoma radiology expert to be part of the meeting. Then it's not perfect, but they can at least present on the screen a copy of the pathology slide, and the pathologist can weigh in and share their thoughts about the various different stainings. Again, the molecular part of some analyses is also a part of the data we ask the physicians to submit when presenting a case.

On the flip side, we asked that if they really, really, really want pathology reviewed, to have a pathologist on their end pull up the actual slides in real time, that then a pathologist on our end could weigh in on and look at, and then kind of discuss a little bit more. Similarly, for radiology, for scans, unless they send us the CD with the scans, which isn't always feasible to do in time for the tumor board, but if they can pull it up, we give them control of the screen, they can pull up the scans and go through them, and our radiologists weigh in and share their thoughts and contribute that way.

Dale Shepard, MD, PhD: Tell us a little bit about the process. How does a case get submitted?

Matteo Trucco, MD: Cases get submitted through a secure online portal through REDCap, the same REDCap we use for a lot of research studies, so it's very secure. Either the physician can submit it, or if a patient wants their case reviewed, they can ask their physician to submit the case. They go to the portal, and there's some legal jargon that needs to be signed off on, because we're not doing formal consultations here. We're not seeing the patient, we're not seeing the whole record, so that has to be clear. Then they just have some basic information about the patient: their age, gender, roughly when they were diagnosed, what treatments they got upfront, what other treatments they may have gotten, surgery, radiation, just the general basics of the case, any information about the pathology of the tumor. Again, if there's any molecular data, that can be shared as well.

Then what specialists you would like on the meeting, and what's your question. You might have a question about surgical resection for this, or whether radiation is indicated, or what chemotherapy options would be reasonable. Then that all gets submitted. It comes actually to me and some of my colleagues, Dr. Luke Nystrom in orthopedic oncology, Stacey Zahler, DO, from the various specialties are all involved. And we kind of look at the basics of the case and say, yeah, I think this is reasonable to present. And yes, we have time to present it. Because, again, as this gets going, we're getting quite popular. We were almost full at only our second tumor board. Then we send the presenter a template, a PowerPoint template, and some instructions about removing personal identifiers from the case. They submit the slides back to us, we make sure that there's nothing in there that shouldn't be in there.

Then on the day of the tumor board, we pull up the slide, if controlled, to the presenter and they present the case. Then everyone who's there will listen in, share their opinion if they have any specific things to say. Other people are a little more vocal and ask questions. There are some trainees that ask questions. There's some of us that kind of ask a little thought-provoking questions to stimulate some discussion. Generally, we share our thoughts, our opinions, some education. Then one of us types up a summary of what was discussed, and we send that back to presenting docs, so they have some sort of record of what was discussed. Then we actually follow up with the presenting doc with a brief survey, it's literally two questions, as to whether or not it was helpful, and to see if the treatment changed at all.

Dale Shepard, MD, PhD: Do the patients themselves, or the patient's families, do they get anything directly from the board? Or are we relying on the presenting physician to relay that information? Matteo Trucco, MD: The patients themselves aren't going to get any information directly from our board for matters of privacy. We're keeping this just the physicians on the tumor board. But, again, we encourage the physicians to share what was presented, that the case was presented, and what the feedback was from the entire group with the family, but that's all through the treating physician.

Dale Shepard, MD, PhD: A lot of the docs that are participating in the tumor board are clearly sarcoma-minded docs, and may well be pretty familiar with Ewing's, and they're kind of weighing in, but how are we reaching out? This seems like a really powerful thing that if someone's in Wyoming and they don't have a close sarcoma specialist, that they can get that more expert opinion. How are we reaching out to more remote places to make sure that they can get coverage?

Matteo Trucco, MD: We are reaching out to, let's say, community oncologists via Twitter, via our referral network, via all of the participating docs. We ask them, please share the link to your community referring docs that you think might benefit from this. Again, this was born from foundations interested in patient-built foundations supporting you on sarcoma. And we're partnering with them to say, hey, listen. Make this known to the community, the Ewing sarcoma community, that if you are in the middle of an area that doesn't have a Ewing sarcoma expert nearby, let your oncologist know that this is a resource for them, and here's the link, and they can then submit a case. We're using social media, using the patient community itself, and then using all of our referral networks to try to reach out to anyone and everyone that could benefit from this.

Dale Shepard, MD, PhD: Another thing that seems like might be powerful, is the ability to capture data from this. So certainly within our own Cleveland Clinic Sarcoma Tumor Board, we collect data, and there's registries. Is there going to be data collected, a registry developed to say, well, these are the cases we've come across, these were our recommendations, these are the outcomes. Given the fact it's a rare tumor, can we learn anything from our recommendations we're making and maybe somehow arrange follow-up and get some sort of clinical insight in terms of whether we're truly making the right recommendations?

Matteo Trucco, MD: Yeah. We're a little limited because of just personal patient information. We can't transfer too much of that. But with the surveys that we send out to the physicians afterwards, we'll at least get a glimpse as to whether or not they thought it was helpful, whether or not it actually informed the treatment decisions that the physician, again, ultimately as the physician who is treating the patient that decides, but was this helpful in coming up with the treatment regimen? How is the patient doing? We follow up twice, one shortly after the tumor board and another time about six months later, just to see, hey, you presented at this tumor board, what came of it?

Again, very, very general, not a whole lot of specifics, but in time, if we present four cases or so a month, we'll start getting that information back. Again, this is led by the Cleveland Clinic, but it's certainly not intended to be the Cleveland Clinic Show. It's a collaborative effort with all these other institutions. So as we get more experienced and do this, I suspect it'll start evolving a little bit, and we may ask some more questions to try to get a little bit more useful data down the road.

Dale Shepard, MD, PhD: I guess from a collaboration standpoint, there are recurring issues. It seems like it would be a good venue to come up with research questions that we have a group of motivated people that can maybe put trials together.

Matteo Trucco, MD: Absolutely. One of the first cases that was presented was a cutaneous Ewing sarcoma, and the physician who presented was asking, do we really have to do the full 14 cycles of chemotherapy? And the general consensus was, at this point with what we know, yeah, but it would be interesting to have a trial to see whether or not we could reduce the doses, since the cutaneous Ewing sarcomas respond really well to treatment. Again, that's kind of the thinking we want to stimulate by bringing these experts all together to discuss these cases.

Dale Shepard, MD, PhD: Well, it's certainly a large undertaking. What was the biggest challenge?

Matteo Trucco, MD: The biggest challenge was actually just getting the word out, for sure. Picture yourself on the other end, you get an email from someone saying, "Hey, we're going to have a tumor board." And you're like, "Sure. Right." In fact, it was funny how we did the first one, and there was surprising, like 83 people was the peak of people on the meeting. But then after that first meeting, it was almost like people communicated to each other saying, "Hey, listen, it's legit. It's not a waste of time." And a lot of people accepted the invitation after the first meeting. That was one of the biggest challenges. The second was just kind of setting up the whole infrastructure: the dataset, the intake forms, the templates, stuff like that. Then, again, we are talking about informally discussing actual patients and then the treatment they're getting.

So there's a lot of legal things that need to be considered because, again, we are not doing official consultations. Some official consultations may come about after these tumor boards, because of the tumor board saying, "Oh, this doc out in California really seemed to have a lot of expertise about this. Maybe a formal consultation with them would be helpful." That's something that can happen independent of the tumor board, but making sure patients were protected, that it's clear that these are not formal recommendations or anything like that, because we're not fully evaluating the patient, but find a way to share thoughts and recommendations and have a safe place for everyone to be able to discuss these patients was one of the most important things, and that required a lot of meetings to make sure we did it right.

Dale Shepard, MD, PhD: Well, you've certainly done a great job coordinating this and getting this off the ground, so certainly to be commended for that. I guess if people who are listening want more information about the National Ewing Sarcoma Tumor Board, or want to submit a case for review, they can visit Clevelandclinic.org/news board. That's Clevelandclinic.org/news board, and they can get some additional information, submit a case. Thanks, Matteo, appreciate you being with us today.

Matteo Trucco, MD: Thank you. It was a pleasure.

Dale Shepard, MD, PhD: This concludes this episode of Cancer Advances. You will find additional podcast episodes on our website, clevelandclinic.org/canceradvancespodcast. Subscribe to the podcast on iTunes, Google Play, Spotify, SoundCloud, or wherever you listen to podcasts. And don't forget, you can access real-time updates from Cleveland Clinic's Cancer Center experts on our ConsultQD website at consultqd.clevelandclinic.org/cancer. Thank you for listening. Please join us again soon.

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