Renal oncocytoma (patient information)

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Renal oncocytoma
Overview
What are the symptoms?
What are the causes?
Who is at highest risk?
Diagnosis
When to seek urgent medical care?
Treatment options
Where to find medical care for Renal oncocytoma?
Prevention
What to expect (Outlook/Prognosis)?
Possible complications
Renal oncocytoma On the Web
Ongoing Trials at Clinical Trials.gov
Images of Renal oncocytoma
Videos on Renal oncocytoma
FDA on Renal oncocytoma
CDC on Renal oncocytoma
Renal oncocytoma in the news
Blogs on Renal oncocytoma
Directions to Hospitals Treating Renal oncocytoma
Risk calculators and risk factors for Renal oncocytoma

Editor-In-Chief: C. Michael Gibson, M.S., M.D. [1]

Overview

Renal oncocytoma is a benign (noncancerous) growth of the kidney. They generally do not cause any signs or symptoms and are often discovered incidentally (by chance) while a person is undergoing diagnostic imaging for other conditions. Some people with renal oncocytoma will have abdominal or flank pain; blood in the urine; and/or an abdominal mass. Although these tumors can occur in people of all ages, they most commonly develop in men who are over age 50. The exact underlying cause of most isolated (single tumor affecting one kidney) renal oncocytomas is unknown; however, multiple and bilateral (affecting both kidneys) renal oncocytomas sometimes occur in people with certain genetic syndromes such as tuberous sclerosis complex and Birt-Hogg-Dube syndrome. Although many benign tumors do not require treatment unless they are causing unpleasant symptoms, it can be difficult to confidently differentiate a renal oncocytoma from renal cell carcinoma. Most affected people are, therefore, treated with surgery which allows for confirmation of the diagnosis.

Symptoms

• Most people with a renal oncocytoma do not have any signs or symptoms. In fact, these tumors are often discovered incidentally (by chance) while a person is undergoing diagnostic imaging for other conditions. In about a third of cases, people with renal oncocytoma will present with abdominal or flank pain; blood in the urine; and/or an abdominal mass.

• Affected people usually have a single, unilateral (only affecting one kidney) renal oncocytoma. However, multiple, bilateral (affecting both kidneys) tumors have rarely been reported in people with tuberous sclerosis complex and Birt-Hogg-Dube syndrome.

• This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Cause

• The exact underlying cause of most renal oncocytomas is unknown. However, researchers suspect that acquired (not present at birth) changes in mitochondrial DNA may play a role in the development of some of these tumors.

• Renal oncocytomas sometimes occur in people with certain genetic syndromes such as tuberous sclerosis complex and Birt-Hogg-Dube syndrome. In these cases, affected people often have multiple and bilateral (affecting both kidneys) oncocytomas and may also have family members with these tumors. When renal oncocytomas are part of a genetic syndrome, they are caused by changes (mutations) in a specific gene. Tuberous sclerosis complex is caused by mutations in the TSC1 gene or TSC2 gene, while Birt-Hogg-Dube syndrome is caused by mutations in the FLCN gene.

Inheritance

• Most renal oncocytomas are not inherited. They usually occur sporadically in people with no family history of tumors.
• However, in rare cases, they can occur in people with certain genetic syndromes such as tuberous sclerosis complex and Birt-Hogg-Dube syndrome.Both of these conditions are inherited in an autosomal dominant manner.

Diagnosis

• A diagnosis of renal oncocytoma is often suspected based on imaging studies such as computed tomography (CT scan) and/or magnetic resonance imaging (MRI scan). However, it can be difficult to differentiate a renal oncocytoma from renal cell carcinoma based on imaging studies alone. Although researchers are currently studying several new techniques for the diagnosis of renal oncocytoma, a biopsy is often needed to confirm the diagnosis.

Treatment

• Most renal oncocytomas are benign (non-cancerous) and metastasis is very rare. Although many benign tumors do not require treatment unless they are causing unpleasant symptoms, it can be difficult to confidently differentiate a renal oncocytoma from renal cell carcinoma based on diagnostic imaging tests alone. Most people are, therefore, treated with surgery which allows for confirmation of the diagnosis. If a renal oncocytoma is strongly suspected prior to surgery, a more conservative procedure such as a partial nephrectomy, may be performed.

Prognosis

• The long-term outlook (prognosis) for people with a sporadic (not part of a genetic syndrome) renal oncocytoma is generally good. These tumors are most often benign and metastasis is very rare. After renal oncocytomas are surgically removed, they typically don't recur. The lifespan of affected people is usually not impacted by the tumor.

• When a renal oncocytoma is part of a genetic syndrome such as tuberous sclerosis complex and Birt-Hogg-Dube syndrome, the prognosis varies based on the other associated signs and symptoms.

Find a Specialist

• If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

• If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

• You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

• To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by the American College of Medical Genetics and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.

Research

• Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

• ClinicalTrials.gov lists trials that are related to Renal oncocytoma. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

• Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

KCCure

• E-mail: https://kccure.org/contact/

• Website: https://kccure.org/

Social Networking Websites

• Visit the following Facebook groups or pages related to Renal oncocytoma:

• Oncocytoma and other Benign Renal Tumors

Organizations Providing General Support

American Association of Kidney Patients

3505 E. Frontage Rd., Suite 315

Tampa, FL 33607-1796

Toll-free: 800-749-2257

Telephone: 813-636-8100

Fax: 813-636-8122

E-mail: info@aakp.org

Website: http://www.aakp.org

American Kidney Fund, Inc.

6110 Executive Boulevard

Suite 1010

Rockville, MD 20852

Toll-free: 866-300-2900

Telephone: 301-881-3052

E-mail: helpline@kidneyfund.org

Website: http://www.kidneyfund.org

National Kidney Foundation

30 East 33rd Street

New York, NY 10016

Toll-free: 800-622-9010

Telephone: 212-889-2210

Fax: 212-689-9261

E-mail: info@kidney.org

Website: https://www.kidney.org/