Pheochromocytoma
How We Can Help You
Stanford’s Endocrine Tumor Program includes experts in diagnosing and treating pheochromocytomas, a type of tumor in the adrenal glands, and paragangliomas, a related tumor type that forms outside the adrenals.. We have helped develop new diagnostic tools and therapies to lock down tumor cells and reduce their effects. From genetic assessment through surgery and follow-up, we can help you find answers and avoid related risks.
The two adrenal glands are located above each kidney and produce adrenaline, a hormone that helps regulate the body’s stress response. Both pheochromocytomas and paragangliomas may be cancerous (malignant) or noncancerous (benign), and both are rare. In the throatneck, paragangliomas may be called glomus tumors. Emay These tumors require treatment because even benign tumors can release hormones that cause serious risks and complications.
What We Offer You For Pheochromocytoma-Paraganglioma
- Internationally known experts with knowledge of the genetic causes of pheochromocytoma and paraganglioma syndromes.
- Team of specialists in surgery, genetics, endocrinology, interventional radiology, and medical oncology to discuss the best way forward for you.
- Latest diagnostic techniques to give you clear answers, including advanced dotatate PET scans that Stanford helped develop and test for FDA approval.
- Most advanced treatment from Stanford experts who know which therapies are on the horizon and help develop new treatments, like targeted PRRT radiation.
- Genetic testing and counseling by our Endocrine Tumor Program specialists, to assess possible mutations and guide your treatment planning.
- Active clinical research, including finding new mutations (gene changes) that may provide answers about pheochromocytomas and potential new treatments.
- Comprehensive support services that connect you with other patients and families who have similar experiences, to help align your care with your life.
Treatment for Pheochromocytoma-Paraganglioma
Pheochromocytomas are usually benign (noncancerous), but they require specialized care. These tumors release hormones that can cause life-threatening symptoms that include hypertension (high blood pressure), heart palpitations (rapid heartbeat), and headache. As a National Cancer Institute-designated Comprehensive Cancer Center, Stanford offers the expertise to diagnose and treat every aspect of these complex syndromes, including cancer that has spread.
Surgery is the primary treatment for benign and cancerous pheochromocytomas. This surgery is highly specialized, and after surgery, people need ongoing treatment.
Your doctor will monitor you carefully for ongoing effects from the tumor or pheochromocytoma cells elsewhere in your body. If the pheochromocytoma has a genetic link, our endocrine geneticists can also follow your family members to watch for signs of disease.
Treatment Overview
Genetic Counseling
Whether you’ve gotten a diagnosis at another medical center or are coming to Stanford for your first evaluation, our team offers a thorough assessment. Then we recommend and provide treatments to help control symptoms and the tumor’s growth.
Surgery
Research has found that removing pheochromocytoma tumors, at any stage, can increase life expectancy. Stanford’s surgeons have exceptional expertise in specialized surgery to remove all types of adrenal tumors. In nearly all cases, your surgeon will remove the pheochromocytoma and the adrenal gland.
Surgery for these tumors requires careful management of adrenaline, which is produced by the adrenal glands. Stanford has an anesthesiologist dedicated specifically to surgery for pheochromocytomas and paragangliomas. Learn more about surgery for adrenal tumors.
Radiation therapy
Radiation therapy targets tumors with strong radioactive beams to destroy cancer cells. Stanford participated in developing an advanced treatment, peptide receptor radionuclide therapy (PRRT). PRRT takes advantage of a receptor on the tumor’s surface to concentrate cancer-killing radiation on the tumor and destroy tumor cells. This targeted treatment helps reduce the side effects of treatment.
We offer several types of external beam radiation therapy, including:
- 3D conformal radiation therapy
- Intensity-modulated radiation therapy (IMRT)
- Stereotactic ablative radiotherapy (SABR/SBRT)
Medical therapy
Medical cancer therapy delivers treatments by mouth, through a vein by IV (intravenous) infusion, or by injection. These systemic (whole body) treatments attack pheochromocytoma cells to control the tumor’s growth. We offer:
Genetic counseling plays a crucial role in managing pheochromocytomas. These tumors are genetic in 30% to 40% of cases, which means there is a significant chance that your relatives may share the condition, or you may pass a higher risk to your children.
Our doctors are studying new mutations (changes) that cause pheochromocytoma and paraganglioma syndromes. Their work has helped establish that providing precision treatment – care based on your genetics and advanced imaging – leads to better outcomes for you. This research guides our treatment philosophy at Stanford.
Genetic risk assessment
Our Endocrine Tumor Program includes a nationally recognized specialist in genetic testing and counseling specifically for endocrine tumors, including pheochromocytomas. Because many pheochromocytomas have a genetic cause, everyone diagnosed with pheochromocytoma tumors should have genetic testing. The expertise to conduct that testing isn’t available everywhere, but Stanford includes genetic risk assessment as part of our routine treatment.
Genetic evaluation equips your doctors to understand the metabolic basis of a particular disease. The disease’s genetic makeup influences how a tumor might behave. It also offers clues about what other tumors, in what other areas of the body, to watch for.
Risk management
People with the mutation that causes pheochromocytoma have a higher likelihood of developing recurrent pheochromocytoma tumors or related tumors, such as gastrointestinal stromal tumors (GIST). Our doctors tune your care specifically to look for those other tumor types. Our goal is to catch other tumors as early as possible, so that you receive appropriate care.
If you have the gene mutation, your family members may also be at higher risk for pheochromocytoma and related tumors. Your doctor will discuss genetic risk assessment and management services that may benefit you and your family.
Genetic mutations and pheochromocytoma
Pheochromocytomas are associated with several genetic syndromes:
- Von Hippel-Lindau syndrome (vHL)
- Multiple endocrine neoplasia type 2 (MEN2)
- Neurofibromatosis type 1 (NF1), also called Von Recklinghausen's disease
- Familial paraganglioma syndrome (SDHx)
Whether you’ve gotten a diagnosis at another medical center or are coming to Stanford for your first evaluation, our team offers a thorough assessment. Then we recommend and provide treatments to help control symptoms and the tumor’s growth.
Surgery
Research has found that removing pheochromocytoma tumors, at any stage, can increase life expectancy. Stanford’s surgeons have exceptional expertise in specialized surgery to remove all types of adrenal tumors. In nearly all cases, your surgeon will remove the pheochromocytoma and the adrenal gland.
Surgery for these tumors requires careful management of adrenaline, which is produced by the adrenal glands. Stanford has an anesthesiologist dedicated specifically to surgery for pheochromocytomas and paragangliomas. Learn more about surgery for adrenal tumors.
Radiation therapy
Radiation therapy targets tumors with strong radioactive beams to destroy cancer cells. Stanford participated in developing an advanced treatment, peptide receptor radionuclide therapy (PRRT). PRRT takes advantage of a receptor on the tumor’s surface to concentrate cancer-killing radiation on the tumor and destroy tumor cells. This targeted treatment helps reduce the side effects of treatment.
We offer several types of external beam radiation therapy, including:
- 3D conformal radiation therapy
- Intensity-modulated radiation therapy (IMRT)
- Stereotactic ablative radiotherapy (SABR/SBRT)
Medical therapy
Medical cancer therapy delivers treatments by mouth, through a vein by IV (intravenous) infusion, or by injection. These systemic (whole body) treatments attack pheochromocytoma cells to control the tumor’s growth. We offer:
close Treatment Overview
Genetic counseling plays a crucial role in managing pheochromocytomas. These tumors are genetic in 30% to 40% of cases, which means there is a significant chance that your relatives may share the condition, or you may pass a higher risk to your children.
Our doctors are studying new mutations (changes) that cause pheochromocytoma and paraganglioma syndromes. Their work has helped establish that providing precision treatment – care based on your genetics and advanced imaging – leads to better outcomes for you. This research guides our treatment philosophy at Stanford.
Genetic risk assessment
Our Endocrine Tumor Program includes a nationally recognized specialist in genetic testing and counseling specifically for endocrine tumors, including pheochromocytomas. Because many pheochromocytomas have a genetic cause, everyone diagnosed with pheochromocytoma tumors should have genetic testing. The expertise to conduct that testing isn’t available everywhere, but Stanford includes genetic risk assessment as part of our routine treatment.
Genetic evaluation equips your doctors to understand the metabolic basis of a particular disease. The disease’s genetic makeup influences how a tumor might behave. It also offers clues about what other tumors, in what other areas of the body, to watch for.
Risk management
People with the mutation that causes pheochromocytoma have a higher likelihood of developing recurrent pheochromocytoma tumors or related tumors, such as gastrointestinal stromal tumors (GIST). Our doctors tune your care specifically to look for those other tumor types. Our goal is to catch other tumors as early as possible, so that you receive appropriate care.
If you have the gene mutation, your family members may also be at higher risk for pheochromocytoma and related tumors. Your doctor will discuss genetic risk assessment and management services that may benefit you and your family.
Genetic mutations and pheochromocytoma
Pheochromocytomas are associated with several genetic syndromes:
- Von Hippel-Lindau syndrome (vHL)
- Multiple endocrine neoplasia type 2 (MEN2)
- Neurofibromatosis type 1 (NF1), also called Von Recklinghausen's disease
- Familial paraganglioma syndrome (SDHx)
close Genetic Counseling
Clinical Trials for Pheochromocytoma-Paraganglioma
Clinical trials are research studies that evaluate a new medical approach, device, drug, or other treatment. As a Stanford Health Care patient, you may be eligible to participate in open clinical trials. Open trials refer to studies that are currently recruiting participants or that may recruit participants in the near future. Closed trials are not currently enrolling, but similar studies may open in the future.
What is Pheochromocytoma-Paraganglioma?
Pheochromocytoma