Overview
Tubulocystic renal cell carcinoma (TC-RCC) is a very rare type of kidney cancer. It was officially recognized as a distinct subtype of renal cell carcinoma in 2013 by the International Society of Urological Pathology. This cancer gets its name from the way it looks under a microscope — it forms small tubes (tubules) and cysts lined by specific types of cells. The tumor typically appears as a sponge-like mass in the kidney, often made up of many small cysts of varying sizes. Most people with tubulocystic renal cell carcinoma do not have symptoms in the early stages. The tumor is often found by accident during imaging tests done for other reasons. When symptoms do occur, they may include blood in the urine, pain in the side or back, or a mass that can be felt in the abdomen. Compared to many other kidney cancers, TC-RCC tends to behave in a less aggressive manner, though rare cases of spread (metastasis) to other organs have been reported. Treatment usually involves surgery to remove the tumor, either by removing the entire kidney (radical nephrectomy) or just the part of the kidney containing the tumor (partial nephrectomy). Because this cancer is so rare, there are no large clinical trials specifically for TC-RCC, and treatment decisions are often guided by experience with other types of renal cell carcinoma. The overall outlook for most patients is favorable, especially when the cancer is caught early and has not spread beyond the kidney.
Also known as:
Key symptoms:
Blood in the urine (hematuria)Pain in the side or flank areaA lump or mass felt in the abdomenBack pain near the kidney areaUnexplained weight lossFatigue or tirednessNo symptoms at all (found incidentally on imaging)
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Tubulocystic renal cell carcinoma.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Tubulocystic renal cell carcinoma at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Tubulocystic renal cell carcinoma.
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 Tubulocystic renal cell carcinoma.
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.What stage is my tubulocystic renal cell carcinoma, and has it spread beyond the kidney?,Is a partial nephrectomy (kidney-sparing surgery) an option for me, or do I need the whole kidney removed?,How often will I need follow-up imaging after surgery, and for how long?,Are there any clinical trials or newer treatments that might be relevant for my specific case?,What should I watch for that might indicate the cancer has come back?,Will losing part or all of a kidney affect my long-term health or kidney function?,Should I be tested for any hereditary kidney cancer syndromes given my diagnosis?
Common questions about Tubulocystic renal cell carcinoma
What is Tubulocystic renal cell carcinoma?
Tubulocystic renal cell carcinoma (TC-RCC) is a very rare type of kidney cancer. It was officially recognized as a distinct subtype of renal cell carcinoma in 2013 by the International Society of Urological Pathology. This cancer gets its name from the way it looks under a microscope — it forms small tubes (tubules) and cysts lined by specific types of cells. The tumor typically appears as a sponge-like mass in the kidney, often made up of many small cysts of varying sizes. Most people with tubulocystic renal cell carcinoma do not have symptoms in the early stages. The tumor is often found by
How is Tubulocystic renal cell carcinoma inherited?
Tubulocystic renal cell carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Tubulocystic renal cell carcinoma typically begin?
Typical onset of Tubulocystic renal cell carcinoma is adult. Age of onset can vary across affected individuals.