Late this past year, a group of oncologists led by Philippe E. Spiess, MD, MS, FRCS(C), FACS, Assistant Chief of Surgical Services and Senior Member in the Department of Genitourinary Oncology at Moffitt Cancer Center and Professor in the Department of Urology at the University of South Florida; and Andrea Necchi, MD, Chief of Genitourinary Medical Oncology at San Raffaele University, Milan, Italy, launched the Global Society of Rare Genitourinary Tumors to engender international cooperation to identify clinical gaps in treating these rare cancers, develop standardization in managing patient care, and improve patient education.
On December 4 to 5, 2020, the society held a virtual global summit on penile and testicular cancers attended by more than 350 participants from 15 countries. Over the course of the 2-day conference, research was presented on promising combination immunotherapy regimens and other novel therapies, as well as the design of universal treatment guidelines to meet the clinical needs of patients in both low- and high-income countries, and how to address patients’ quality-of-life concerns. Several clinical studies presented during the meeting were featured during the 2021 Genitourinary Cancers Symposium, held February 11 to 13, and will also be presented during the virtual 2021 ASCO Annual Meeting, to be held June 4 to 8.
Philippe E. Spiess, MD, MS, FRCS(C), FACS
Andrea Necchi, MD
“Some of our presenters talked about the severe impact penile and testicular cancers have on patients. For example, some patients are never told how these cancers affect their quality of life. As a result, many patients experience significant depression and, at times, suicidal thoughts,” said Dr. Spiess, who is President of the Global Society of Rare Genitourinary Tumors. “This is where we, as an oncology community, have to enhance not only our patient educational efforts, but our social support as well, so patients do not have to deal with these devastating cancers on their own.”
Overcoming the Challenges of Treating Rare Genitourinary Cancers
According to the National Cancer Institute, rare cancers are defined as those that occur in fewer than 6 per 100,000 people per year.1 Cumulatively, they account for about 20% of all cancers worldwide, and their incidence is increasing by 0.5% a year.2-4 Rare genitourinary cancers, such as penile, testicular, and bladder cancers with variant histology, occur in fewer than 15 of 100,000 patients each year. However, in some low-income countries, including those in South America, Asia, and Africa, the occurrence of rare genitourinary cancers, such as penile cancer, is significantly higher, largely due to the high incidence of human papillomavirus infection and poverty.
“Penile cancer is less frequently seen in high-income countries. Unfortunately, low-income countries are seeing an increase in the incidence of this cancer. Lack of awareness about the cancer and access to good health care are also contributing to late-stage diagnosis and poorer outcomes for these patients,” said Dr. Spiess.
Lack of research funding and difficulty in launching clinical trials because of the small number of available participants, a shortage of accessible cancer registries and tissue banks, limited access to effective treatments, and the absence of guideline-based clinical management are all contributing factors to worse outcomes for patients with rare genitourinary malignancies. Among the primary goals of the Global Society of Rare Genitourinary Tumors, according to Dr. Spiess, is to bring together experts from both low- and high-income countries to develop treatment guidelines that can meet the needs of diverse cultural patient populations and geographic areas and provide consistent care for patients in every country. The new society also plans to increase clinical research in rare genitourinary tumors to improve the scientific knowledge in this field internationally, especially in advancing personalized care for patients.
We would like to complement the efforts of other major oncology societies in promoting research on these challenging cancers to incorporate genomics and personalized oncology…— Philippe E. Spiess, MD, MS, FRCS(C), FACS
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“We would like to complement the efforts of other major oncology societies in promoting research on these challenging cancers to incorporate genomics and personalized oncology, so that, in the future, we have a better understanding of the unique genomic profiles of these tumors and save more lives,” said Dr. Spiess.
“An additional challenge for everyday practice is the need to recognize indications for particular genomic tests in special circumstances,” added Dr. Necchi, Vice President of the Global Society of Rare Genitourinary Tumors. “This situation currently applies to several genitourinary tumors. Therefore, we are able to stratify the tumors according to select molecular characteristics, with the consequence of making these tumors rare. Within the mission of the Global Society of Rare Genitourinary Tumors, we have a double effort to make: sustain these tests and make the access equitable worldwide and, consequently, spread knowledge on the existence of peculiar situations within frequent genitourinary tumors, especially in underrepresented countries.”
The Global Society of Rare Genitourinary Tumors Summit 2021 will be held virtually this fall and will focus on rare variants of kidney cancer and upper track urothelial carcinoma. The meeting will be chaired by Toni Choueiri, MD, Director, Lank Center for Genitourinary Oncology at Dana-Farber Cancer Institute, and Sharokh F. Shariat, MD, Adjunct Clinical Associate Professor of Urology at Weill Cornell Medicine. For more information about the Global Society of Rare Genitourinary Tumors, visit www.gsrgt.com.
DISCLOSURE: Dr. Spiess has served in a leadership role for the Global Society of Rare Genitourinary Tumors and the National Comprehensive Cancer Network (NCCN) bladder and penile cancer panel; has received honoraria from UpToDate; has held other relationships with NCCN; and has held other relationships with Moffitt Cancer Center. Dr. Necchi has an immediate family member who has been employed by Bayer; has an immediate family member who holds stock or other ownership interests in Bayer; has received honoraria from AstraZeneca, Bristol Myers Squibb, Foundation Medicine, Janssen, Merck, and Roche; has served as a consultant or advisor to AstraZeneca, Bayer, Bristol Myers Squibb, Clovis Oncology, Ferring, GlaxoSmithKline, Incyte, Janssen, Merck Sharp & Dohme, Rainier Therapeutics, Roche, and Seattle Genetics/Astellas; has received research funding from Ipsen; has received institutional research funding from AstraZeneca, Merck Sharp & Dohme, and Seagen; has been reimbursed for travel, accommodations, or other expenses by AstraZeneca, Janssen, Merck Sharp & Dohme, Rainier Therapeutics, and Roche; and has an immediate family member who has held other relationships with Bayer.
1. National Cancer Institute: The International Rare Cancer Initiative. Available at www.cancer.gov/about-nci/organization/cgh/research/irci. Accessed March 25, 2021.
2. Gatta G, van der Zwan JM, Casali PG, et al: RARECARE working group: Rare cancers are not so rare; the rare cancer burden in Europe. Eur J Cancer 47:2493-2511, 2011.
3. Greenlee RT, Goodman MT, Lynch CF, et al: The occurrence of rare cancers in U.S. Adults, 1995–2004. Public Health Rep 125:28-43, 2010.
4. Gatta G, Capocaccia R, Botta L, et al: RARECARENet working group. Burden and centralized treatment in Europe of rare tumours: Results of RARECARENet—A population-based study. Lancet Oncol 18:1022-1039, 2017.