Overview
Renal medullary carcinoma (RMC) is a rare and aggressive type of kidney cancer that arises from the inner part of the kidney called the medulla. It is sometimes called "the seventh sickle cell nephropathy" because it occurs almost exclusively in people who carry the sickle cell trait (hemoglobin AS) or, less commonly, have sickle cell disease or other sickle hemoglobin variants. This cancer primarily affects young people, often teenagers and young adults, and is more common in males than females. The disease typically grows and spreads quickly. By the time it is diagnosed, it has usually already spread to other parts of the body such as the lymph nodes, lungs, liver, or bones. Common symptoms include blood in the urine, pain in the side or flank area, a mass that can be felt in the abdomen, weight loss, and fatigue. Some patients also experience fever and night sweats. Renal medullary carcinoma is known for being resistant to many standard cancer treatments. Surgery to remove the kidney (nephrectomy) is often performed when possible, and chemotherapy is the main treatment for advanced disease. Unfortunately, this cancer does not respond well to the targeted therapies or immunotherapies that work for other kidney cancers. Research is ongoing to find more effective treatments, and clinical trials are an important option for patients. The overall prognosis remains poor, making early detection and access to specialized cancer centers critical.
Key symptoms:
Blood in the urine (hematuria)Pain in the side or flankA lump or mass in the abdomenUnexplained weight lossFatigue and feeling very tiredFeverNight sweatsLoss of appetiteAbdominal painBack painSwollen lymph nodesShortness of breath if cancer has spread to the lungsBone pain if cancer has spread to the bones
Sporadic
Usually appears on its own, not inherited from a parent
Juvenile
Begins in the teen years
FDA & Trial Timeline
3 eventsM.D. Anderson Cancer Center — PHASE2
Brazilian Institute of Robotic Surgery — NA
M.D. Anderson Cancer Center — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Renal medullary carcinoma.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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
Travel Grants
No travel grants are currently matched to Renal medullary carcinoma.
Community
No community posts yet. Be the first to share your experience with Renal medullary carcinoma.
Start the conversation →Latest news about Renal medullary carcinoma
Disease timeline:
New recruiting trial: Comparison of Outcomes and Surgical Time Between Cortical and Medullary Suture vs. Medullary-Only Suture: Cortex Clinical Trial
A new clinical trial is recruiting patients for Renal medullary carcinoma
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 the cancer, and has it spread beyond the kidney?,What treatment options are available for my specific situation, including clinical trials?,Should I be treated at a specialized cancer center with experience in renal medullary carcinoma?,What are the expected side effects of the recommended treatment, and how can they be managed?,How will my sickle cell trait affect my treatment plan?,Are there any clinical trials currently enrolling patients with renal medullary carcinoma?,What supportive care and palliative care services are available to help with symptoms and quality of life?
Common questions about Renal medullary carcinoma
What is Renal medullary carcinoma?
Renal medullary carcinoma (RMC) is a rare and aggressive type of kidney cancer that arises from the inner part of the kidney called the medulla. It is sometimes called "the seventh sickle cell nephropathy" because it occurs almost exclusively in people who carry the sickle cell trait (hemoglobin AS) or, less commonly, have sickle cell disease or other sickle hemoglobin variants. This cancer primarily affects young people, often teenagers and young adults, and is more common in males than females. The disease typically grows and spreads quickly. By the time it is diagnosed, it has usually alre
How is Renal medullary carcinoma inherited?
Renal medullary carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Renal medullary carcinoma typically begin?
Typical onset of Renal medullary carcinoma is juvenile. Age of onset can vary across affected individuals.
Are there clinical trials for Renal medullary carcinoma?
Yes — 1 recruiting clinical trial is currently listed for Renal medullary carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Renal medullary carcinoma?
24 specialists and care centers treating Renal medullary carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.