Multilocular cystic renal neoplasm of low malignant potential

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2Active trials8Treatment centers

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Overview

Multilocular cystic renal neoplasm of low malignant potential (MCRNLMP) is a rare kidney tumor that is made up of multiple fluid-filled sacs (cysts) separated by thin walls of tissue. This condition was previously known as cystic nephroma or multilocular cystic renal cell carcinoma. It is classified as having "low malignant potential," which means it behaves in a very slow, non-aggressive manner and has an excellent outlook compared to most kidney cancers. The tumor is typically found in one kidney and does not usually spread to other parts of the body. Many people with this condition have no symptoms at all, and the tumor is often discovered by accident during imaging tests done for other reasons. When symptoms do occur, they may include blood in the urine, a feeling of fullness or a mass in the side or abdomen, or mild flank pain. The tumor is most commonly found in adults, and it tends to occur more often in women than in men. The main treatment is surgery to remove the tumor, which is usually curative. Depending on the size and location of the tumor, a surgeon may remove just the tumor itself (partial nephrectomy) or the entire affected kidney (radical nephrectomy). Because this tumor has very low malignant potential, additional treatments like chemotherapy or radiation are generally not needed. After surgery, patients are typically monitored with periodic imaging to ensure the tumor does not come back, though recurrence is extremely rare.

Also known as:

Key symptoms:

Blood in the urine (hematuria)Flank or side painA lump or mass felt in the abdomen or sideFeeling of fullness in the abdomenNo symptoms at all (found incidentally on imaging)Mild back pain on the affected sideUrinary discomfort

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
May 2024Study of RAS(ON) Inhibitors in Patients With Gastrointestinal Solid Tumors

Revolution Medicines, Inc. — PHASE1

TrialRECRUITING
Feb 2006Study of Kidney Tumors in Younger Patients

Children's Oncology Group

TrialACTIVE NOT RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Multilocular cystic renal neoplasm of low malignant potential.

2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

2 recruitingView all trials with filters →
Phase 11 trial
Study of RAS(ON) Inhibitors in Patients With Gastrointestinal Solid Tumors
Phase 1
Actively Recruiting
PI: Study Director (Revolution Medicines) · Sites: Chandler, Arizona; Phoenix, Arizona +18 more · Age: 1899 yrs
Other1 trial
Study of Kidney Tumors in Younger Patients
Active
PI: Elizabeth A Mullen (Children's Oncology Group) · Sites: Birmingham, Alabama; Birmingham, Alabama +246 more · Age: 029 yrs

No specialists are currently listed for Multilocular cystic renal neoplasm of low malignant potential.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
⚗️ Trial Site

Massachusetts General Hospital

📍 Boston, Massachusetts

👤 Matthew Frigault, MD

👤 Janssen Research & Development, LLC Clinical Trial

⚗️ Trial Site

Columbia University Medical Center

📍 New York, New York

👤 Janssen Research & Development, LLC Clinical Trial

👤 Anthony A. Amato, MD

⚗️ Trial Site

Mayo Clinic

📍 Jacksonville, Florida

⚗️ Trial Site

Dana Farber Cancer Institute

📍 Boston, Massachusetts

👤 Janssen Research & Development, LLC Clinical Trial

⚗️ Trial Site

University of Nebraska Medical Center

📍 Omaha, Nebraska

⚗️ Trial Site

Mayo Clinic Hospital

📍 Phoenix, Arizona

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

Travel Grants

No travel grants are currently matched to Multilocular cystic renal neoplasm of low malignant potential.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Multilocular cystic renal neoplasm of low malignant potential

Disease timeline:

New trial: Study of RAS(ON) Inhibitors in Patients With Gastrointestinal Solid Tumors

Phase PHASE1 trial recruiting. RMC-6236

Caregiver Resources

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Social Security Disability

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Questions for your doctor

Bring these to your next appointment

  • Q1.Is my tumor definitely a multilocular cystic renal neoplasm of low malignant potential, or could it be a different type of kidney tumor?,Can I have a partial nephrectomy to save as much of my kidney as possible?,What is my risk of the tumor coming back after surgery?,How often will I need follow-up imaging after surgery, and for how long?,Will I need any additional treatment like chemotherapy or radiation after surgery?,How will losing part or all of one kidney affect my long-term health?,Are there any lifestyle changes I should make after treatment?

Common questions about Multilocular cystic renal neoplasm of low malignant potential

What is Multilocular cystic renal neoplasm of low malignant potential?

Multilocular cystic renal neoplasm of low malignant potential (MCRNLMP) is a rare kidney tumor that is made up of multiple fluid-filled sacs (cysts) separated by thin walls of tissue. This condition was previously known as cystic nephroma or multilocular cystic renal cell carcinoma. It is classified as having "low malignant potential," which means it behaves in a very slow, non-aggressive manner and has an excellent outlook compared to most kidney cancers. The tumor is typically found in one kidney and does not usually spread to other parts of the body. Many people with this condition have no

How is Multilocular cystic renal neoplasm of low malignant potential inherited?

Multilocular cystic renal neoplasm of low malignant potential follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Multilocular cystic renal neoplasm of low malignant potential typically begin?

Typical onset of Multilocular cystic renal neoplasm of low malignant potential is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Multilocular cystic renal neoplasm of low malignant potential?

Yes — 2 recruiting clinical trials are currently listed for Multilocular cystic renal neoplasm of low malignant potential on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.