Overview
Renal cell carcinoma associated with neuroblastoma is an extremely rare condition that has been described in medical literature where a person develops kidney cancer (renal cell carcinoma) following a history of neuroblastoma, which is a childhood cancer that develops from nerve tissue. This entry in the Orphanet database is now marked as 'OBSOLETE,' meaning it is no longer considered a distinct, separate disease classification. The association was noted in rare cases where children who survived neuroblastoma later developed renal cell carcinoma, possibly due to shared genetic factors, the effects of prior cancer treatment (such as chemotherapy or radiation), or an underlying genetic predisposition that increases the risk for both tumor types. Renal cell carcinoma typically affects the lining of the small tubes in the kidney and can cause symptoms such as blood in the urine, flank pain, or a mass in the abdomen. Neuroblastoma usually occurs in very young children and arises in the adrenal glands or along nerve pathways. Because this classification is obsolete, patients and families who have experienced both conditions should work closely with oncologists and geneticists to understand their individual situation, as the underlying cause may vary from person to person. Treatment depends on the specific cancer type and stage and may include surgery, chemotherapy, radiation, or targeted therapies.
Also known as:
Key symptoms:
Blood in the urinePain in the side or lower backA lump or mass in the abdomenUnexplained weight lossFatigue or tirednessFever without an obvious causeLoss of appetiteAbdominal swelling in children (neuroblastoma)Bone painHigh blood pressure
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
2 availableOPDIVO
adult patients with advanced RCC, as a first-line treatment in combination with cabozantinib
LENVIMA
In combination with pembrolizumab, for the first line treatment of adult patients with advanced renal cell carcinoma (RCC).
Clinical Trials
View all trials with filters →No actively recruiting trials found for OBSOLETE: Renal cell carcinoma associated with neuroblastoma at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Renal cell carcinoma associated with neuroblastoma.
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
Financial Resources
2 resourcesTECENTRIQ
Genentech, Inc.
TECENTRIQ Patient Support (Genentech Access Solutions)
Travel Grants
No travel grants are currently matched to OBSOLETE: Renal cell carcinoma associated with neuroblastoma.
Community
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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.Could there be a genetic syndrome that explains why both neuroblastoma and kidney cancer occurred?,Should our family members be tested for cancer predisposition genes?,What is the recommended screening schedule for detecting new cancers early?,How might prior neuroblastoma treatment have affected the risk of developing kidney cancer?,What are the treatment options for the kidney cancer, and what are the expected side effects?,Are there any clinical trials available for patients with this combination of cancers?,What long-term follow-up care will be needed after treatment is completed?
Common questions about OBSOLETE: Renal cell carcinoma associated with neuroblastoma
What is OBSOLETE: Renal cell carcinoma associated with neuroblastoma?
Renal cell carcinoma associated with neuroblastoma is an extremely rare condition that has been described in medical literature where a person develops kidney cancer (renal cell carcinoma) following a history of neuroblastoma, which is a childhood cancer that develops from nerve tissue. This entry in the Orphanet database is now marked as 'OBSOLETE,' meaning it is no longer considered a distinct, separate disease classification. The association was noted in rare cases where children who survived neuroblastoma later developed renal cell carcinoma, possibly due to shared genetic factors, the eff
What treatment and support options exist for OBSOLETE: Renal cell carcinoma associated with neuroblastoma?
2 patient support programs are currently tracked on UniteRare for OBSOLETE: Renal cell carcinoma associated with neuroblastoma. See the treatments and support programs sections for copay assistance, eligibility, and contact details.