Overview
Gonadal germ cell tumors are a group of rare cancers that develop from the cells that normally become eggs or sperm. These tumors grow in the ovaries (in females) or the testes (in males). They can occur at any age, from infancy through adulthood, though they are most commonly seen in young adults and adolescents. Germ cell tumors include several subtypes such as seminomas, dysgerminomas, yolk sac tumors, embryonal carcinomas, choriocarcinomas, and teratomas (both mature and immature). Symptoms depend on the location and size of the tumor. In males, a painless lump or swelling in the testicle is the most common sign. In females, symptoms may include abdominal pain, bloating, or a pelvic mass. Some tumors produce hormones that can cause early puberty in children or abnormal bleeding in women. The good news is that many gonadal germ cell tumors respond very well to treatment, especially when caught early. Treatment typically involves surgery to remove the tumor, and depending on the type and stage, chemotherapy may also be needed. Platinum-based chemotherapy regimens, particularly those using cisplatin, have dramatically improved survival rates. Even in cases where the cancer has spread, cure rates remain high for many subtypes, making this one of the more treatable forms of cancer.
Key symptoms:
Painless lump or swelling in the testicleAbdominal pain or bloatingPelvic mass or pressureAbnormal vaginal bleedingEarly puberty in childrenBreast enlargement in malesBack painFeeling of heaviness in the scrotumFatigue and tirednessUnexplained weight lossNausea or vomitingShortness of breath if cancer has spread to lungsIrregular menstrual periodsAbdominal swelling or fluid buildup
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsBoehringer Ingelheim — PHASE1
Natera, Inc.
Imperial College London
LigaChem Biosciences, Inc. — PHASE1, PHASE2
AstraZeneca — PHASE1, PHASE2
University Health Network, Toronto
Tata Memorial Centre — NA
Memorial Sloan Kettering Cancer Center — NA
BioInvent International AB — PHASE1, PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Gonadal germ cell tumor.
14 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Gonadal germ cell tumor.
Community
No community posts yet. Be the first to share your experience with Gonadal germ cell tumor.
Start the conversation →Latest news about Gonadal germ cell tumor
Disease timeline:
New recruiting trial: Sample Collection for Ongoing Research and Product Evaluation Study
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: Autologous and Allogeneic Whole Cell Cancer Vaccine for Metastatic Tumors
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: A Study Evaluating the Integrative Medicine at Home (IM@HOME) Program in People With Cancer
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: A Study to Evaluate TROP2 ADC LCB84 Single Agent and in Combination With an Anti-PD-1 Ab in Advanced Solid Tumors
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: Marathon of Hope Cancer Centres Network Study for Ontario (MOHCCN-O)
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: BI-1808 as a Single Agent and With Pembrolizumab (KEYTRUDA® ) in Treatment of Advanced Malignancies(Keynote-D20)
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: LIVInG With chrONic Cancer TrEatments (LONGEVITI) Study
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: Predictive Value of Progastrin Titer at Diagnosis and of Progastrin Kinetics During Treatment in Cancer Patients
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: Study of AZD9574 as Monotherapy and in Combination With Anti-cancer Agents in Participants With Advanced Solid Malignancies
A new clinical trial is recruiting patients for Gonadal germ cell tumor
New recruiting trial: A Study to Test How Well Different Doses of BI 3820768 Are Tolerated by People With Advanced Cancer (Solid Tumours)
A new clinical trial is recruiting patients for Gonadal germ cell tumor
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What specific type of germ cell tumor do I have, and what stage is it?,What are my treatment options, and what are the cure rates for my specific situation?,Should I bank sperm or freeze eggs before starting treatment, and how quickly do we need to act?,What are the short-term and long-term side effects of the recommended treatment?,How often will I need follow-up visits and scans after treatment is complete?,Are there any clinical trials available that might be appropriate for me?,Will I need hormone replacement therapy after treatment?
Common questions about Gonadal germ cell tumor
What is Gonadal germ cell tumor?
Gonadal germ cell tumors are a group of rare cancers that develop from the cells that normally become eggs or sperm. These tumors grow in the ovaries (in females) or the testes (in males). They can occur at any age, from infancy through adulthood, though they are most commonly seen in young adults and adolescents. Germ cell tumors include several subtypes such as seminomas, dysgerminomas, yolk sac tumors, embryonal carcinomas, choriocarcinomas, and teratomas (both mature and immature). Symptoms depend on the location and size of the tumor. In males, a painless lump or swelling in the testicle
How is Gonadal germ cell tumor inherited?
Gonadal germ cell tumor follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Gonadal germ cell tumor?
Yes — 14 recruiting clinical trials are currently listed for Gonadal germ cell tumor on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Gonadal germ cell tumor?
25 specialists and care centers treating Gonadal germ cell tumor are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.