Pheo and para may be rare, but patients are not on their own. Specialized hospitals have teams of experienced doctors with extensive experience treating pheo and para. Getting treatment at a specialized hospital is the best option for patients with pheo or para.
Pheo and para originate from neuroendocrine cells.
Neuroendocrine cells communicate with muscles and organs by producing different types of hormones. For example, if your body needs your heart to beat faster, your brain can send a signal to neuroendocrine cells telling them to produce a hormone called epinephrine (also called adrenaline). The epinephrine would signal to your heart that it should beat faster.
Pheo and para form throughout the body.
Pheo form in the adrenal glands, just above the kidneys. The adrenal gland produces the hormones epinephrine and norepinephrine. Para form from cells outside the adrenal glands, which also produce epinephrine and norepinephrine.
Pheo and para produce “fight or flight” hormones.
Because of where they form, pheo and para tumors are able to produce epinephrine and norepinephrine on their own, and they can also take up these hormones.
Most pheo and para can be removed with surgery unless they are metastatic (spread to another part of the body). In other types of cancer, you can sometimes tell if a tumor may be cancerous, even if it has not spread. However, with pheo and para, the only way to know if a tumor is cancerous is if it spreads.
About 1 in 6 patients have a tumor that comes back after surgery.
Tumors that come back also have the potential to be metastatic. If you have pheo or para and had surgery to remove it, be sure to continue to check in with your doctor to monitor for any returning tumors.
Most people are in their 40s or 50s when they are diagnosed, but the disease can also affect children and the elderly.
Pheo and para should be managed by a team of doctors.
Treating pheo and para can be challenging, and many different treatments are considered so different types of medical experts are involved, including:
Certain hospitals have teams of doctors who deal specifically with pheo and para. This type of hospital may be known as a Center of Excellence, or COE, which means it has teams of different types of medical experts working together to treat patients. For those with metastatic pheo or para tumors, prompt treatment is essential because only 20-60% of people will survive 5 years after their diagnosis.