Pheochromocytoma

How might pheochromocytoma be treated?

The recommended treatment of a pheochromocytoma is removal by surgery, even in cases where there are pheochromocytomas in both adrenal glands. Prior to surgery, it is important to take medications to control and stabilize blood pressure. Following surgery, affected individuals should visit their physicians regularly to monitor blood pressure and blood levels of metanephrine. Long-term treatment with medication should only be considered if, for some reason, the pheochromocytoma cannot be removed by surgery.

Last updated on 05-01-20

Healthcare Resources

Neuroendocrine Tumor Research Foundation

The Neuroendocrine Tumor Research Foundation has a Doctor Database for help finding a physician specializing in treating neuroendocrine tumors. They also provide a link to a list of multidisciplinary diagnosis and treatment centers on the same web page.

Last updated on 04-27-20

The Pheo Para Alliance

The Pheo Para Alliance has organized a directory of physicians, surgeons, researchers, experts and others experienced in the treatment and management of pheochromocytoma and paraganglioma.

Last updated on 04-27-20

Management Guidelines

North American Neuroendocrine Tumor Society

The North American Neuroendocrine Tumor Society has published several consensus guidelines relating to the medical treatment and management of neuroendocrine tumors. Guidelines are developed pursuant to National Institute of Health (NIH) standards and serve as important references for practicing physicians.

Last updated on 04-27-20

Where To Start

NET Patient Foundation

The NET Patient Foundation has an online handbook that aims to serve as a guide to living with neuroendocrine tumors.

Last updated on 04-27-20

Name: American Cancer Society 250 Williams Street NW
Atlanta, GA, 30329, United States
Toll Free: 1-800-227-2345 Url: https://www.cancer.org
Name: Cancer Hope Network 2 North Road, Suite A
Chester, NJ, 07930, United States
Phone: +1-908-879-4039 Toll Free: 1-877-467-3638 (1-877-HOPENET) Fax : +1-908-879-6518 Email: info@cancerhopenetwork.org/ Url: https://www.cancerhopenetwork.org/
Name: NET Patient Foundation UK and Ireland Holly House (2nd Floor) 74 Upper Holly Walk
Leamington Spa
Warwickshire, CV32 4JL, United Kingdom
Phone: 01926 883487 (General inquieries) Toll Free: 0800 434 6476 (Helpline) Email: hello@netpatientfoundation.org Url: https://www.netpatientfoundation.org/
Name: The Pheo Para Alliance 9721 Whitley Park Place
Bethesda, MD, 20814, United States
Email: pheoalliance@gmail.com Url: https://pheopara.org/
Name: National Adrenal Diseases Foundation NADF P.O. Box 566
Lake Zurich, IL, 60047,
Phone: +1-(847) 726-9010 Email: nadfmail@nadf.us Url: https://www.nadf.us
Name: The Healing NET Foundation 200 Hill Avenue Suite 4
Nashville, TN, 37210, United States
Phone: 615-3696463 Email: info@thehealingnet.org Url: https://www.thehealingnet.org/
Name: North American Neuroendocrine Tumor Society NANETS 136 Everett Road
Albany, NY, 12205, United States
Phone: (650) 762-6387 Email: staff@nanets.net Url: https://nanets.net/
Name: Neuroendocrine Cancer Awareness Network NCAN 3074 Brookchase Blvd
Fort Mill, SC, 29707, United States
Phone: 866-850-9555 Email: contact@netcancerawareness.org,help@netcancerawareness.org Url: https://www.netcancerawareness.org/
Sweeney AT. Pheochromocytoma eMedicine. June 2014; Reference Link

Note, these links are external searches against the National Laboratory of Medicine's drug database. You may need to adjust the search if there are no results found.

Drug Name Generic Name
Azedra Ultratrace Iobenguane I 131

Connect with other users with Pheochromocytoma on the RareGuru app

Do you have information about a disease, disorder, or syndrome? Want to suggest a symptom?
Please send suggestions to RareGuru!

The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

People Using the App

Join the RareGuru Community

To connect, share, empower and heal today.

People Using the App