New society for rare genitourinary cancers aims to build education and awareness

The Global Society of Rare Genitourinary Tumors (GSRGT) launched during the pandemic, hoping to give a voice to those who have or treat rare cancers in this space. In a recent interview, Philippe E. Spiess, MD, MS, FRCSC, FACS, and Andrea Necchi, MD, share how they aim to develop an environment that emphasizes education, patient advocacy, and clinical research for this subspecialty—one that has historically failed to receive the spotlight as much as other, more common cancers. Spiess and Necchi serve as President and Vice President of this organization. Spiess is a genitourinary oncologist and assistant chief of surgical services at the Moffitt Cancer Center in Tampa, Florida. Necchi is an associate professor at Vita-Salute Raffaele University and the head of genitourinary medical oncology at IRCCS San Raffaele Hospital and Scientific Institute in Milan, Italy.

What is the GSRGT?

Spiess: The [GSRGT] was really created as a non-financially driven or incentivized initiative to gather thought leaders who are dedicated to care [for] often underfunded and often heterogeneous tumors, in the sense that because they're less frequent, in many parts of the world, unfortunately, there [are] not consistencies in how they're cared for. Andrea and I have collaborated on research for many years now, and this came about through some of our projects. We realized very quickly that there are some parts of the world where many of these cases are either not reported in the literature, or there are, unfortunately, some inconsistencies in how they're cared for. And sometimes patients are not getting the best-quality care. So, back and forth, the 2 of us really came to the realization that there was a critical need for a society to be funded [that] focused specifically in this area. This was a total grassroots effort. We decided to do this and to embark on this journey together, and it's been incredibly rewarding because we've seen this grow from a concept into something which has really gotten a lot of, I would say, more than just regional or attention among people that are in this area, but within the health care community and oncology community as a whole. There are a lot of wonderful initiatives taking place right now in research, in education, and patient advocacy, which this global society is really focused in. I really do see, in many areas now, there's a lot of reference to what we're working on and what we'd like to develop. I really foresee this becoming a very critical society in this area for many, many years to come.

Necchi: I can only echo Phil's words. I think that the most impressive things that we realized since the very beginning is the fact that our primary focus was to give some important reward to patients affected by rare tumors. But, as a matter of fact, we resulted in giving voice to physicians and clinicians dealing with these types of tumors, or for clinicians from underrepresented countries, or clinicians working in the hard territories and dealing with the huge problems of discrepancy, geographical limitations, and so on. So, the huge added value of our work is dedicated to time together with the patient and working on the patient's side.

What makes this society unique from other organizations?

Spiess: There are some organizations, whether you talk about [the American Society of Clinical Oncology], the [European Association of Urology], or the [American Urological Association], that have obviously touched on rare cancers, but there isn't a significant focus in it. There are some societies we collaborate with to try to develop a network of centers of excellence for the care of rare cancers. Our focus is complementary to that a little bit. We're trying to do a 3-prong approach. One is education of health care providers globally. That's not only doctors. That could be a general oncologist, or it could be a nurse practitioner, or it could be a nurse. Two is, very importantly, patient advocacy. There needs to be a voice for patients who are impacted with rare cancers, and that's central to what we do and what we've been really focused in. A lot of advocacy groups have come to us and [seen] how we can collaborate. That's very unique. Three is research. We have a lot of initiatives in rare cancers related to research as well. We do have now thought leaders from many parts of the world that are engaged with us, and I think we have an opportunity to do not only clinical trials, [or] retrospective or prospective studies. Andrea has brought up a lot of wonderful thoughts of studies we could really do with pharma[ceutical] support in this area in the future. I think that this is critical. We've had a couple global summits dedicated to specifically focus on rare cancers that have been highly successful, and that's also very different because there are rarely conferences dedicated to this where you're getting all the thought leaders in a given room. When we have a big meeting, typically penile and testes cancer is given a 1-hour session to go over the whole [topic] and all the research. It's not enough, and you can't deep dive into the content—what are the critical needs, demands, and I would say, opportunities from a research standpoint—and really focus on elevating the understanding and education of the global community.

Necchi: It’s exciting to realize that we are taking the global trend of the entire management of solid tumors, because even frequent cancers, like prostate cancer or bladder cancer, are becoming much, much [more rare due to] the identification of specific pathways or specific features related to the biology of the disease that actually dissect the disease in multiple diseases. And so, when we are dealing with BRCA-mutated prostate cancer, we are dealing with rare tumors despite [it being a] globally frequent cancer. The aim of our society and the principles of our work apply to this type of approach that can be applied to any type of tumor that is considered under this perspective. So, we are actually in the same line of clinical research, and we may benefit from our experience in addressing the special needs from the from the patient and physician side, mainly from underrepresented countries towards this global trend of clinical research. And this [causes], of course, huge problems. For example, access to genomic testing, access to new drugs as Phil has already anticipated, [and] access to clinical trials. There are several societies [and] there is an increasing interest towards these types of limitations that we are experiencing in clinical research, in performing clinical research. Patient access in general to any new drug is a problem, and we have set the basic principles to deal with these types of problems.

Please describe the various focus groups that comprise the GSRGT.

Spiess: The society is really broken down into multiple different subgroups, and it was critical we do that just because you can't accomplish everything, and you need to have focus. When you look at the hierarchy of the society, our mission is really focused in 3 given areas: Education, patient advocacy, and research. Those are the highly focused areas, and we do have subcommittees. [I'd] really like to mention [that] we have a pathology subcommittee, which has been unbelievably successful. Lara Harik [, MD] from Emory University has done an exceptional job. She's taken this on, and really what she's done is developed webinars and gathered some of the top GU pathologists in the world and turned this into a major conference. I think the first meeting had over 700 people. It was impressive to see the feedback we got. And so, that group works autonomously, but is under the umbrella of the global society. And on the education side, we clearly wanted to make sure, again, we meet the needs of all health care providers. That means we have focused research for physicians and residents, and young trainees. Nursing is a critical area and patient advocacy is a huge area.

On [the] patient advocacy side, we have patients that are leading that effort. I may think I know the needs of my patients, [but] they know far more about what they're dealing with and what they're facing. So, we made that a critical area of focus. That also has been very rewarding because we've been able to work with some international societies in developing that.

On the research side, this is an area we're actively working in right now. There's a lot of opportunity there. We have committees dedicated to clinical trials, to databases, specifically either prospective or retrospective. We've done some survey-type studies as well to understand where the greatest needs are within given areas. In addition to that, we have focus groups divided on these specific disease sites, so penile, testicular, urethral, adrenal—all these areas have specific subcommittees as well. This society also has a leadership team. Andrea and I lead this from a President [and] Vice President standpoint, but we also have a group of leaders from around the world, representing all ethnicities, genders, and others, because we wanted to make sure we were we're inclusive and make sure that we meet the needs and expectations of everybody. Last but not least, we have a funding and a membership group that helps us lead the other subgroups.

Necchi: It's exciting to see how many young, talented people are growing within our society, young talented urologists, oncologists. We have set a very, very fruitful collaboration with the European Association of Urology [and the] Young Academic Urologists group. One of our aims is also trying to provide education, research, and career opportunities for young people that are growing in their career. They may have, in our society, the possibility to publish and the possibility to be leaders for the present and for the near future, and to promote international studies. This is not possible at the country level or a single institution level. It is something that we should also consider anytime [we] deal with the people that aim to build a career in oncology. It is not surprising that, as Phil mentioned, the pathologist [is] so far, a primary role in leading activities. The first step that we do every time we [have a] patient with a rare tumor is to ask for a review of the pathological diagnosis. So, this is actually in line [with] the singular physician perspective and the single institution side. And so, the pathologists are a primary role by nature when dealing with rare tumors and based on the developments in molecular pathology and the understanding and edification of new features within more frequent tours, I suspect that they will have a growing interest and role in our society.

What are some prevalent issues that the society aims to tackle?

Necchi: [In terms of] the developments of the treatment possibilities for the patients, the geographical discrepancies, the social discrepancies, and the impact of these discrepancies in the possibility for the patient to access any type of cure or surgical intervention is critical. So, we will do everything that's possible to provide that [and] to set up collaborations, to establish connection with major societies and with their providers and regulators in order to see, identify, and network that may help in minimizing these limitations.

On the other side, as Phil has mentioned, we have the clinical research. Doing clinical research internationally has become tremendously difficult, so [what] we can do and what we are aiming to do so far is to provide a network for centers to provide to collaborators in order to set up prospective studies and retrospective studies. The possibility to provide a reliable network of centers that may contribute [to a] specific and reliable amount of patients in specific situations is something that is regarded to as optimal, as an added value. The companies, institutions, and organizations see, from the clinical research standpoint, another added value. And so, in the near future, what they would see is the possibility of promoting and sponsoring trials. This will enable us also to directly impact the clinical researcher with new therapeutic strategies. This is something that is not our primary aim of today because the former initiatives had a prevalent impact on our growth and on our growth and on our interests so far. This is at least from the clinical research standpoint, and then we have the plethora of educational activities and career opportunities that we may provide. They [represent] the major goal together with clinical research.

Spiess: There is a lot that we need to tackle in rare cancers. Awareness [and] education are critical. I see that our footprint is there. I think, in a way, starting the society in the middle of a pandemic was not necessarily a bad thing because virtual really allowed us to touch many people from many parts of the world. I think that's one of the benefits we've seen—[that] we don't always have to necessarily travel to meetings. And sometimes we could do this very, very fluidly, particularly in parts of the world where it's challenging to access and for people to reach out or attend meetings. So, I think we have a lot of opportunities. I think there's a huge area we need to tackle because, in many parts of the world, access to care is very limited. We want to continue to touch not only centers where there clearly is expertise, but parts of the world, [like] Africa, South America, parts [where] we have strong affiliations and partners that wanted to work with the global society. We want to continue to grow that relationship, and to continue to play an increasingly important role in that area. And I really do see some exceptional opportunities there, just through some major work we're doing right now on our website, and other things we're doing to elevate that and to provide those resources. One thing that's going to be launching fairly soon is a tumor board case, which will be put on Twitter and other social media sites, where we'll present a case to clinicians. It'll have clinical pearls there in terms of the critical things you need to think about when you're caring for a given type of rare cancers, and those are things that people will be able to apply directly in their practices. Those are really exciting for us.

How can clinicians get involved in the society?

Spiess: There are many different ways. We have a high presence within social media. I think that was really critical. We realized very quickly that the good old days of medical journals or just word of mouth is good, but it's not really the way you're able to touch people. Most of us now look at our Facebook, Twitter, Instagram, and whatever else, and it's a really easy way to access. So, definitely people should be on the lookout about the society. Definitely check out our website, GSRGT.com, and our Twitter, @GTumors. Those are a preview of what's out there. There are a lot of resources that are going to be on that website, which we're creating in terms of educational material.

And to formally become a member, there's no catch here. You don't need to pay to be a member. We will not be sending you any news or superfluous type of information, which all of us hate getting on a monthly or weekly basis. This is really pure content, and it's there to meet the needs of people. And so, I want to reassure people that this is really meant to be something which is going to be beneficial for people interested in the care of these tumors.

Necchi: These possibilities will, of course, be implemented in the near future and we are going to rebuild and reshape our website. This will be instrumental [in providing] clinicians [with ways] to access and join our society.

Is there anything else you feel our audience should know about GSRGT?

Necchi: The important thing to know is that we aim to focus on the regions that are not under the light of researcher education, in particular in the GU space. What is important for us to make people aware [of] is the fact that within our society, they may provide and they may get access to a perspective from clinicians and health care providers that are not currently providing them with [what] they were provided within major societies or the majority of other societies. So, we can provide a different way of looking at things and looking at developments. Despite our growth [in] the United States and Europe, the focus and the primary activities is out there, [for example,] in India, in Africa, [and] in Asia. We may provide this type of special point of view as perspective that is very original in the context of the existing organizations in this tumor area.

Spiess: There are a lot of people out there in the health care field who want to get involved in organizations and want to roll up their sleeves, and do impactful work. This is, again, [a] grassroots, non-hierarchical-type society in a sense that we're always seeking people who want to work in various groups or subgroups of our society, or engage, particularly in parts of the world where there may be an underrepresentation. Please reach out to us. We're looking for people, the bright and most engaged. So, definitely something which continues to grow, continues to have a need, and we want to continue to really be a global society. We don't want to be focused in Europe and in North America, solely. We want to be in parts of the world where there may not be any clinicians. We could be a resource for health care providers, and patients as well to make them understand some of the important considerations. We are working with major organizations like the WHO [World Health Organization] and others to hopefully strengthen relationships in the future. I do think that we definitely have opportunities to do that in the coming months and years.