Overview
MiT family translocation renal cell carcinoma (also called TFE3/TFEB translocation renal cell carcinoma or Xp11.2 translocation renal cell carcinoma) is a rare type of kidney cancer. Unlike the more common forms of kidney cancer that typically affect older adults, this type can occur in children, teenagers, and young adults, though it can appear at any age. The cancer develops when certain genes in the MiT family — most commonly TFE3 or TFEB — become rearranged through a process called chromosomal translocation. This rearrangement causes the genes to become overactive, driving abnormal cell growth in the kidney. Many patients have no symptoms early on, and the tumor may be found by accident during imaging for another reason. When symptoms do occur, they can include blood in the urine, pain in the side or back, a lump or mass in the abdomen, and sometimes fatigue or unexplained weight loss. In children, the tumor may grow quite large before being noticed. Treatment typically starts with surgery to remove the tumor or the entire affected kidney (nephrectomy). This cancer tends to respond poorly to traditional chemotherapy and some of the older targeted therapies used for other kidney cancers. Newer treatments, including immune checkpoint inhibitors (such as nivolumab and ipilimumab) and certain targeted therapies (like cabozantinib), are being studied and used with some success. Clinical trials are actively exploring better treatment options for this specific cancer subtype.
Also known as:
Key symptoms:
Blood in the urine (may appear pink, red, or brown)Pain in the side or lower backA lump or mass felt in the abdomen or sideUnexplained weight lossFatigue or feeling very tiredLoss of appetiteFever that comes and goes without infectionSwelling in the abdomenAnemia (low red blood cell count)Bone pain if cancer has spreadShortness of breath if cancer has spread to the lungs
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
3 eventsNational Cancer Institute (NCI) — PHASE2
Nulojix: FDA approved
Prophylaxis of organ rejection in adult patients receiving kidney transplants
Proleukin: FDA approved
Treatment of adults (>18 years old) with metastatic renal cell carcinoma.
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableProleukin
Treatment of adults (>18 years old) with metastatic renal cell carcinoma.
Rare Disease Specialist
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 resourcesAvastin
Genentech, Inc.
Avastin Patient Support (Genentech Access Solutions)
Nulojix
Bristol-Myers Squibb Company
Nulojix Patient Support (BMS Access Support)
Travel Grants
No travel grants are currently matched to MiT family translocation renal cell carcinoma.
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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 specific gene translocation does my tumor have, and does that affect my treatment options or prognosis?,Is surgery alone enough, or will I need additional treatment after surgery?,Are there clinical trials available for this specific type of kidney cancer?,How often will I need follow-up imaging, and for how long?,What are the side effects of the recommended treatment, and how can they be managed?,Should I see a specialist at a center experienced with this rare cancer subtype?,How should I protect my kidney function going forward?
Common questions about MiT family translocation renal cell carcinoma
What is MiT family translocation renal cell carcinoma?
MiT family translocation renal cell carcinoma (also called TFE3/TFEB translocation renal cell carcinoma or Xp11.2 translocation renal cell carcinoma) is a rare type of kidney cancer. Unlike the more common forms of kidney cancer that typically affect older adults, this type can occur in children, teenagers, and young adults, though it can appear at any age. The cancer develops when certain genes in the MiT family — most commonly TFE3 or TFEB — become rearranged through a process called chromosomal translocation. This rearrangement causes the genes to become overactive, driving abnormal cell gr
How is MiT family translocation renal cell carcinoma inherited?
MiT family translocation renal cell carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for MiT family translocation renal cell carcinoma?
Yes — 1 recruiting clinical trial is currently listed for MiT family translocation renal cell carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat MiT family translocation renal cell carcinoma?
7 specialists and care centers treating MiT family translocation renal cell carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for MiT family translocation renal cell carcinoma?
2 patient support programs are currently tracked on UniteRare for MiT family translocation renal cell carcinoma. See the treatments and support programs sections for copay assistance, eligibility, and contact details.