Global Society of Rare Genitourinary Tumors (GSRGT) - Andrea Necchi & Philippe Spiess

October 15, 2020

Andrea Necchi, MD, and Philippe Spiess, MD, MS, FRCS(C), FACS, join Alicia Morgans, MD, MPH, to discuss the new international effort to develop a Global Society of Rare Genitourinary (GU) Cancers. The Global Society of Rare Genitourinary Tumors (GSRGT) will have both an educational and research mission to promote evidence-based diagnostic and treatment standards across the world through conferences on specific topics. This initiative is solely dedicated to advancing the care for these rare genitourinary tumors through promoting evidence-based clinical and surgical care, cutting edge research, and healthcare team members as well as patient education through the gathering of international thought leaders with expertise on the subject matter.


Andrea Necchi, MD, Medical Oncologist, Department of Medical Oncology, Fondazione IRCCS - Istituto Nazionale dei Tumori, Milan, Italy

Philippe E. Spiess, MD, MS, FRCS(C), FACS, Urologist, Department of GU Oncology and Tumor Biology, Moffitt Cancer Center, Department of Urology, University of South Florida

Alicia Morgans, MD, MPH Associate Professor of Medicine in the Division of Hematology/Oncology at the Northwestern University Feinberg School of Medicine in Chicago, Illinois.

Read the Full Video Transcript

Alicia Morgans:  Hi, my name is Alicia Morgans and I am a GU Medical Oncologist at Northwestern University in Chicago, Illinois. I am so excited to have here with me today Dr. Phil Spiess, who is a Professor of Oncology and Urology at Moffitt Cancer Center in Florida, where he is also the Assistant Chief of Surgical Services.

We also have Dr. Andrea Necchi, who is at the Istituto Nazionale Dei Tumori in Milan, Italy. Thank you so much, both of you for being here to talk with me today about the foundation of the Global Society of Rare GU Tumors. I'm really excited to hear about this new foundation and all of the work that I'm sure it will get done. So I'll ask you, Phil, first, can you tell me a little bit about this foundation? What's the purpose? What were you thinking about as you put this together?

Philippe Spiess: Thanks Alicia, and thanks for taking the time to speak to us because we are very excited about what we're ultimately trying to develop, which is really a society dedicated to truly focusing on the education and the research for rare tumors. As we all know, a lot of these tumors are discussed in major conferences, whether that be ASCO and ESMO and the AUA and the SUO, but the challenges that often become in major meetings is obviously, we have a lot to talk about, about excitements in many areas, and these rare tumors obviously don't have as much focus, which is appropriately something we would expect.

But we also realize that there are core people dedicated to their care around the world. And we really thought this was a great opportunity to really have a focus, not only on a research standpoint to enhance maybe clinical trials and research in the area, but enhance education. Something that Andrea and I realized through some collaborative research, is that there are certain parts of the world where unfortunately these cancers still are very challenged in terms of the care they receive. And so we really made it a point that the society was going to be dedicated to education of healthcare professionals and physicians who really ultimately would benefit from this.

And similarly, we have a major element of patient advocacy. I'm very excited that we've had some real global leaders in patient advocacy for these tumors who've jumped on board and really embrace working with us. And so those are really our mission, to really enhance research and education as much from the professional side as from a patient advocacy standpoint. And we're really seeing, exactly to that point, we have a lot of enthusiasm from collaborators and people across the world to want to work with us and try to really foster enhancing ultimately what's being done and how patients are being cared for, which is really ultimately core to what we're trying to develop at this point.

Alicia Morgans:  That's wonderful, and I think it's so important that you have an international group actually because these rare GU tumors are exactly that, they are rare. We don't at any one institution typically have many people with any one of these given malignancies. And when we really partner across a country, we still may not have many patients like this. So Andrea, can you speak a little bit to who's involved in this foundation and why from your perspective, is it so important to have this global initiative?

Andrea Necchi:  Yeah, thank you, and thank you, Alicia. Thank you UroToday. Well, I was since the beginning very enthusiastic to join Phil in this endeavor. And our primary aim, and I echo substantially all the words that Phil has already provided. But the other point that is important to me to underscore, which is a peculiar feature of the society, is its ability to collaborate with people from underrepresented countries, from countries like India or countries in South America. Involving also clinicians that are usually at the edge of the educational programs, or sometimes at the edge of educational programs of larger societies, both on the oncological side or the urological side.

So providing these colleagues with the possibility to have a voice and then to provide their experience and their patient experience and treatment experience peculiar to their reality, it's another important feature of the society.  Especially when involving and when dealing with disease, which is primarily seen in these countries, like penile cancer.  I feel is one of the most prominent representatives of these physician-scientists working on this disease. And penile cancer is one of the most frequent tumors in India, for example. So it's very, very important, and we realized since the beginning that it was very, very important to involve Indian people to deal with penile cancer together with us, and to provide us with their perception of their men's needs so that they're not necessarily overlapping with ours. So this is, I think, one of the most important themes of our society.  Coagulating people, coagulating patients, patients' experience, treatments, and also colleagues and physicians.

Alicia Morgans:  I love that because like you said, some of these cancers are actually so much more prevalent in places that don't traditionally have a voice or a seat at the table. So bringing everyone together and lifting them up helps all of us certainly. And so I think that's a beautiful and wonderful mission and such a necessary mission. Phil, you mentioned that you're also really highlighting the voice of the patient, and I think that's a wonderful thing too. Can you tell me a little bit more about how patients and patient advocates are getting engaged with the foundation?

Philippe Spiess:  Absolutely. One of the things I've realized through my practice, clinically, is that there's really not many resources for, as Andrea mentioned, penile cancer, for example. We developed some educational materials for our patients, but when you're looking at things like, for example, bladder cancer, you have some incredible work that BCAN and NCCN and the EU have done. But when you look at penile cancer, unfortunately, there's such a paucity of information. And just really circling what's out there for my patients, I realized that ultimately we need to do something more effective and more comprehensive for our patients. And then I was able to find a really wonderful support group that was developed for penile cancer which was present in social media. And we reached out to their President, Wayne Earle, who has done some wonderful work out of Australia. And Wayne joined us and is now head of our patient advocacy.

And so the goal there is going to be to discuss, for patients, what are the expectations in terms of the various treatment approaches that are being done? And not to hear it from professionals, because obviously, we can give, I think, some oversight and some understanding, but to hear it from the patients who have undergone that type of care. And sometimes we see, that sometimes that's going to be a very powerful and impactful thing in terms of alleviating some of their fears, but also giving them a very realistic and comprehensive way of ultimately seeing how this is going to affect us. And I think that is going to be one of the strongest elements of our society, that is, there is going to be a lot of online educational resources. There's going to be educational webinars coordinated on a regular basis, and really thematically, really go through all these rare tumors and develop a bank of videos and a bank of materials for our patients, for their families, and ultimately as well for healthcare professionals and physicians.

Alicia Morgans:  That's wonderful because some of these illnesses in particular like penile cancer can be so isolating for people, and it's hard to find someone to talk to, not just because the cancer is a rare cancer, but because there are some social barriers, I think, sometimes to speak about some of these things with people that we know or maybe don't know as well. So I think it's wonderful that you are really putting forth the effort to do that. And that's great in this short time that you have developed this entire foundation, that you've already got that moving forward. Andrea, what are some of your other shorter and longer-term goals as you continue to develop the foundation, and continue to influence this GU community?

Andrea NecchiWell, there are so many goals that are being set these days, as well as the entire structure of the society, is going to be finalized. We are working hard in identifying the right sub-groups, which would be dedicated to specific tasks. For example, we have a very strong pathology group made up of pathologists and which will be chaired by [inaudible] from Atlanta, who is very, very highly involved in educational activities, and who will provide substantial help in education activity and involving pathologists and molecular pathologists, morphologists, and other colleagues from worldwide.

I think that another important point that is emerging with the use of generation sequencing, is that there is a list of new entities that may be regarded as rare, not based on the tumor site or histology, but based on the molecular features. And this will become more and more frequent with the spreading use of NGS technologies. One of our future aims will be also together with other physician-scientists and researchers, to involve and to deal with these rare tumor entities, which will be defined by molecular pathology rather than morphology. This is another very interesting and important task.

There are so many other initiatives that will involve the development, for example, of guidelines for special indication, for treatment recommendation, or follow-up recommendations in special cases. So we will work very hard on this and especially in collaborating with existing institutions and groups to share ideas and hopefully to share guidelines and recommendations. I think that most of this work is ready to be planned. But we have an exciting group of colleagues, prominent colleagues in their field of interest, and so they are the premises of creating something that will last for several years.

Alicia Morgans:  I love that you have pathologists involved, because really particularly in these rare GU tumors, sometimes even getting a diagnosis can be a problem. And over time, if there are particular pathology groups, whether they are in Milan, whether they are at Moffitt, or maybe other places, for clinicians to have the opportunity to potentially send pathology for a second opinion, might be a great thing to do too, because certainly there are situations where I send things out, and we are lucky to have actually GU pathologist specialists for each of our GU tumors within our own institution. But even then, sometimes people want to send things out.

But when we think about the global community, that's actually not typical. In most situations, patients are treated at centers that don't necessarily have a pathologist who is dedicated to GU oncology, let alone rare GU tumors. So I love that you have them involved, and I really look forward to seeing how that group's work will continue to evolve within your foundation. So as we wrap up, I'd love to hear closing thoughts or messages from each of you. Just messages you'd like to send to clinicians or to patients who are eager to learn more about the foundation. We can start with Phil.

Philippe Spiess:  First off, thank you again for allowing us to speak to you today. We are very excited. The society is one that's very, I would say, open to membership from around the world. We have a website that Andrea did a wonderful job creating, which we are happy to share the information with. And we are organizing our first symposium. That is going to be in early December. It's going to be focused on penile and testes cancer, and as Andrea said, we are going to have some thought leaders that will be speaking. And it will be very interactive, including some case discussions. So we definitely welcome people to participate, and moving forward, we definitely, definitely welcome all of the people interested, whether you are a physician, whether you are an advanced practitioner, whether you are a nurse. There will be something for everybody who cares for those patients and moving forward, we are very excited to hopefully work with all of you in the near future.

Alicia Morgans:  Wonderful. And Andrea.

Philippe Spiess: Well, very briefly, if you would like to hear some news and potential recommendations in the near future regarding peculiar features or peculiar indications of rare GU tumors, I think that our aim is to provide you with the most updated resources of these tumors.  And we are gathering people, smart people, young people, very equally represented in terms of gender, in terms of ethnicity.  We set up a very, very heterogeneous, and balanced group made up of prominent experts in their fields, in these special fields of GU oncology. I am confident that they will be able to provide you with the important information and updates regarding these tumors and potentially drive future indications next that we can research on them.

Alicia Morgans:  Wonderful. Thank you both. Keep in touch with us when you have that symposium in December, your first meeting. Really, we'd love to talk with the speakers and highlight what they are doing, and certainly talk about it and put links up on UroToday to ensure that the UroToday community can be linked very closely with your community. Because I think that there is so much overlap and we are so eager to see all of the good that your group can do. So thank you so much for your time today, and I appreciate you sharing the wonderful work that you're doing.

Andrea NecchiThank you.

Philippe Spiess:  Thank you. Really appreciate it.