Pheochromocytoma and Paraganglioma

Why choose us for pheochromocytoma and paraganglioma care?

Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center, delivers leading pheochromocytoma and paraganglioma (pheo para) care. We are a Pheo Para Alliance Center of Excellence, which recognizes our commitment to pheo para care and research. We are the first such center in the south-central U.S. and among a few worldwide. Participating in the Alliance brings additional resources, clinical trials and best practices to our South Texas community.

What you need to know about pheochromocytoma and paraganglioma

• Pheochromocytomas are tumors that develop in the adrenal gland. These glands sit on top of each of your kidneys.

• Paraganglioma forms in nerve (chromaffin) cells, which are all over the body. They often form in the head, neck and torso.
• These rare tumors occur in adults and children. They produce excess hormones that raise risks for other health concerns, like high blood pressure.
• Pheochromocytomas and paragangliomas are often noncancerous. But they can spread (metastasize) and become cancerous.
• These tumors are due to gene changes (mutations present at birth) that can run in families.
• People with von Hippel-Lindau (VHL) syndrome and multiple endocrine neoplasia face a higher risk of pheochromocytoma and paraganglioma. Find out more about how we treat these conditions and other rare and familial endocrine tumors.

How to talk to your doctor about pheochromocytoma and paraganglioma

These tumors are challenging to detect and don’t always respond to therapy. We deliver comprehensive services to diagnose, treat and manage pheo para.

You might want to ask your doctor about:

• Genetic testing, a key component of your care that helps you receive appropriate therapies for your needs
• Diagnosis, including the specific mutation that’s causing the tumor and what it means for your care
• Treatments, which may include surgery, medications or clinical trials
• Follow-up plan, which often involves yearly monitoring even if you are not experiencing symptoms

In addition to the support you receive from our team, your loved ones can also help you make care decisions. We welcome family members or trusted friends who wish to accompany you to appointments.

Symptoms

Pheochromocytoma and paraganglioma symptoms are often due to abnormally high levels of hormones called catecholamines.

You may experience:

• Excessive sweating
• Headaches
• High blood pressure
• Panic attacks
• Rapid heartbeat

Diagnosis

Genetic testing shows whether you or your family members carry mutations for pheochromocytoma or paraganglioma. If you have a mutation, we determine which type with a high degree of accuracy. Explore our cancer genetics and high-risk screening program.

We may also perform lab tests, including blood work or urine studies. This information helps us confirm the diagnosis or plan treatments. A specialized imaging test (nuclear medicine study) may be necessary for complex cases. Your care may include whole-body imaging if we suspect the tumors have spread.

Treatment

Pheo para can affect many organs and may require multiple treatments. Mays Cancer Center is home to the experts you need in one program. Our team includes surgeons, medical oncologists (doctors who treat cancer with medications), urologists, otolaryngologists (ear, nose and throat doctors) and others.

Your personalized care plan depends on many factors:

• If you are at risk but do not have tumors, we provide ongoing monitoring to check for the early signs of pheo para.
• If there are tumors, and you can have surgery, you undergo a procedure to remove them.
• If there are tumors and you are not eligible for surgery, you may receive other treatments, such as chemotherapy or clinical trials.
• If tumors come back after treatment, we explore additional treatment options, which may include clinical trials.

Research

Pheo para researchers at Mays Cancer Center have been studying these conditions for decades. We have identified specific gene mutations that increase a person’s pheo para risk. We also have an in-depth understanding of the mutations that are more likely to cause tumors to spread to metastasize.

Additional clinical trial opportunities may be available through our participation in the:

• Pheo Para Alliance
• VHL Alliance