Transcript:Brian A. Van Tine, MD, PhD: One of the things I’ve found most interesting in the last couple of years has been the influence and the importance of social media in supporting large sarcoma centers and helping patients get to sarcoma centers by educating new patients. The current patients are actually educating the patients that are coming in, based on the statements that came out of Liddy Shriver and the Sarcoma Foundation of America, where they were pushing this idea that sarcoma patients probably need to be treated more optimally with people who do this all the time.

What this has led to is a number of large expert centers. There are about 40 specialized medical oncologists in this country because you have to be at a large academic center to support somebody that only treats sarcoma to have the patient volume to do it.

What I think is really interesting, and maybe we can just go across the panel, is to talk about the patient volume in terms of how many patients you treat, how many patients you see in second opinion, and your multidisciplinary care at each institution so we can learn a little bit about what’s going on everywhere from MD Anderson to Miami. So if you would like to start, Dr. Patel?

Shreyaskumar R. Patel, MD: Our center sees more than 1000 new visits in a given calendar year. They’re distributed within medical oncology and surgical and orthopedic oncology. Radiation oncology can occasionally see some new patients. This may account for about 90%-plus of all the sarcomas that come to MD Anderson.

There are site-specific nuances, if you will, where a head and neck sarcoma might go to head and neck surgery first or a gynecologic sarcoma may go to the GYN team. But that’s how the numbers pan out and, again, despite the numbers, we do have a program where we talk amongst each other, so there are multidisciplinary conferences where these cases are discussed and treatment plans are outlined.

Brian A. Van Tine, MD, PhD: And then at Harvard?

Andrew J. Wagner, MD, PhD: At Harvard, we have a combined center between Dana Farber Cancer Institute and Massachusetts General Hospital, and collectively we see a similar number, about 1000 new patients a year. We don’t treat all of them. A lot of them are second opinions that come from other places in New England or other places in the country, or from other places in the world.

What’s really important is that we stay in touch with those patients and their physicians to help guide them in treatment because it’s just impractical for patients who live 8 hours away to come see us for every treatment. A lot of our care is spent in helping to guide care that’s provided at other centers, but being available for patients also when they want to come back for restaging or especially for new clinical trials or for the inflection points in their treatment, such as when they’re having progression or toxicity that needs to be managed.

It’s a moving target in terms of the number of patients we’re actually treating at any given time, but it’s a combination of patients that we are directly administering drugs to and other patients that we’re providing ongoing consultative services to.

Brian A. Van Tine, MD, PhD: I think one of the neat things on this panel is that Robin Jones is here, and he can kind of give us a European perspective, because things are managed slightly differently there. What is the volume at the Royal Marsden Hospital?

Robin L. Jones, MD, MRCP: Thanks, Brian. The volume at the Royal Marsden is similar: over 1000 new patients each year. Again, with the nuances described by Dr. Patel and Dr. Wagner, many patients have come for second opinions or come from abroad. We work with local oncologists based in the UK and elsewhere to guide treatment and to help with the decision-making process at certain points. Also, some patients are referred directly to the head and neck or gynecology service, for instance.

The system in the UK is certainly very different than the system in the United States in that all sarcoma patients need to be referred directly to a sarcoma center on diagnosis, which, in view of the geography of the country, is relatively easy to do. It does create issues as Dr. Randall mentioned, in terms of workload. This is particularly true for our surgical team, with many patients being referred for lipomas, for instance. It’s difficult sometimes to find that balance, in terms of referrals coming in and how to triage those referrals. But, generally, the system works very, very well.

Brian A. Van Tine, MD, PhD: I think it’s interesting that you lead the 3 granddaddy programs and if you add someone from Memorial Sloan-Kettering, the 4 granddaddy programs. I lead a program at Washington University in St. Louis which actually has a different demographic. Washington University only sees 600 to 700 new patients a year, but we treat most of them. We’re a large trial center, and just given the geography of the United States, you’ve got the Northeast corridor where you have a good majority of the medical oncologists that treat sarcoma and then you have the middle of the country.

I think Jonathan will tell us about the challenges in Florida. I think that Huntsman Cancer Institute has some similar challenges, which is that patients travel. This patient population will travel immensely. I have patients that drive up from New Orleans and down from Chicago and from Wichita, Kansas, just for trials because they are in the middle of the country where there are less sarcoma resources than on the coasts. We have a multidisciplinary team of 30, all with dedicated surgeons.

We actually meet together, which is really kind of an encouraging, quickly moving program. We’ve developed something based on everything you’ve all taught me that I think has been well put together. So if we move a little bit farther to the West, you end up at the Huntsman Cancer Institute.

R. Lor Randall, MD, FACS: Right, this is a nice transition. Our numbers are similar to yours. Interestingly, when I looked at the post at Utah, I rolled out a map and saw that—being from there and having been on both coasts—the University of Utah and Huntsman Cancer Institute and Primary Children’s Hospital, which is all a conglomeration, sees about 14% of the geographic United States, or referral base, I should say. That’s not population, that’s geographic numbers. But it does mean that many patients are coming a great distance for their definitive care.

We’ll see additional patients for a second opinion, domestically and internationally. One of the challenges we face is that these patients are coming from some remote areas of the United States, tumbleweeds floating around down Main Street kind-of-thing. They’re coming to see us, and we need to make sure that we can bundle all of their care because we know it’s going to be definitive, all at that visit. The resources to get down and see us are a challenge, and many of these people have families. So that’s another nuance to the issues that we’ve all discussed.

Brian A. Van Tine, MD, PhD: Then, Jon, I think you have probably the youngest and the most rapidly evolving program, having moved from MD Anderson to Miami. I’m interested to hear what’s going on at the Sylvester at this point.

Jonathan C. Trent, MD: At the Sylvester Cancer Center, we also see about 700 new sarcoma patients per year, and they come through a variety of sources. Many are referred directly to myself or to Dr. Breelyn Wilky, or to our surgeons, such as Dr. Nipun Merchant and Dr. Alan Livingstone.

As a critical part of our multidisciplinary team, we actively involve the head and neck surgeons and the dermatologists. We have a molecular pathologist who attends our multidisciplinary conferences, and so we try to pull in gastroenterology or anybody who could potentially touch sarcoma at our center; we bring them into the team. When they see a new patient, the first step is to present it at our multidisciplinary conference. That way we have a very streamlined and evidence-based management for our sarcoma patients. We see a large number of patients in the Southeast United States and, of course, as any other sarcoma center, patients are willing to travel for their care.

We’re also the gateway to the Caribbean, South America, and Latin America, so we have patients who come to our practice from every country in Central and South America and the Caribbean. Many of them move to Miami for their care. Of course, we also have a number of patients in Europe and/or the Middle East who have homes in Miami and are diagnosed with a sarcoma, move to Miami for their care, and stay at their condominium on South Beach. Then when we complete their care, they travel back to Russia or to Turkey or the Middle East.

Andrew J. Wagner, MD, PhD: Or to Boston. We share patients. There are plenty of patients who go south for the summer and Jon and I share patients.

Transcript Edited for Clarity