Actor portrayals.
Pheo and para should be managed by a team of doctors and other healthcare professionals
Several types of medical experts and specialists may be involved in your care- Endocrinologists are doctors who specialize in treating hormone-related diseases
- Genetic counselors help families identify and understand inheritable genetic mutations
- Nuclear medicine physicians, nuclear radiologists, and radiation oncologists are doctors who use a special molecule called
meta-iodobenzylguanidine (MIBG) to detect and/or treat pheo and para
- Oncologists are doctors who specialize in treating cancer
- Radiologists are doctors who use methods like computed tomography (CT) or magnetic resonance imaging (MRI) to detect cancer in the body
- Surgeons are doctors who are trained to remove tumors with surgery
Specialized hospitals and centers of excellence
Certain hospitals have teams of doctors who deal specifically with pheo and para.
These hospitals are called centers of excellence (COEs). COEs have specialized programs within healthcare institutions that supply exceptionally high concentrations of expertise and related resources focused on specific areas of medical care that are delivered in a comprehensive, interdisciplinary fashion. As a result, they offer many advantages for healthcare professionals and the populations they serve.
Once diagnosed, your doctor will provide you with an appropriate path of care
Commonly used treatments to help control tumors and reduce symptomsSurgical procedures
Most pheo and para tumors can be removed with surgery. If a tumor is too close to other organs, it may be too dangerous to remove.- Any surgery to remove a pheo or para tumor can trigger a release of hormones. Because hormones may have an impact on the body during surgical procedures, doctors may prescribe certain drugs to stabilize heart rate and blood pressure before the operation
- After surgery, tumors can come back at a rate between 6 and nearly 17%. These tumors can spread. Check in regularly with your doctor to ensure your pheo or para has not returned or spread
Radiation therapies
Radiation therapy is the use of high-energy X-rays or radioactive particles to destroy cancer cells and may be used when surgery is not possible.- External beam radiation therapy is radiation from an X-ray machine outside the body. It is frequently used when pheo or para have spread because it helps relieve pain or other symptoms
- Systemic radiation therapy involves injecting targeted, radioactive particles into the blood. The particles “find” tumors and attack them from within. It’s also used to diagnose pheo and para
Other treatment options
The primary goal of pheo and para treatment is the removal of any and all tumors. When that’s not possible, or the disease requires regular management and maintenance, additional options may be needed.These options are not approved by the Food and Drug Administration (FDA). However, they may help control tumor growth and reduce symptoms. Additionally, to counteract the extra hormones produced by tumors, doctors may prescribe drugs to help lower blood pressure and heart rate.
What happens after treatment?
After treatment, you should continue to visit your doctor regularly for testing. Long-term management is especially important because your risk for additional tumor growth may be high.
Routine visits can help:
- Detect early signs of tumors returning
- Identify any genetic mutations
Long-term follow-up includes:
- Biochemical testing
- Screening for signs and symptoms, such as high blood pressure
- Radiographic studies
Living with pheo and para
Being Your Own Best Advocate
Dave Bassham talks about the importance of finding doctors who take rare disease into account—even after many tries.
Next section: Support when you need it