What Is a Paraganglioma Tumor?
The rare tumor known as a paraganglioma grows in some nerves. It is usually benign (not cancerous) and slow-growing. In some cases, a paraganglioma causes an increase in adrenaline. Some studies indicate that paragangliomas are found in only two out of every one million people each year.
Some paragangliomas are found in the neck near the carotid artery or within the skull. Other paragangliomas are found in the abdomen or the chest.
Can You Feel a Paraganglioma?
Typically not, but some may appear as swelling in the neck.
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Paraganglioma Symptoms
High blood pressure, which may be hard to control and sporadic, is the most common symptom. However, you may have high blood pressure but not have a paraganglioma. Most people who do have paragangliomas are between 30 and 50 years old.
Rarely, a paraganglioma creates hormones called catecholamines or adrenaline. As a result, you may have symptoms similar to your body’s “fight or flight” response. These symptoms may remind you of how you feel when you are anxious or panicked:
- fast heartbeat,
- flushed skin,
- trouble breathing, and
- shakiness
- high blood pressure
If a paraganglioma grows in the neck and spreads, tumor symptoms can be hoarseness, pain, tongue paralysis, and trouble swallowing.
Causes of Paraganglioma
Paraganglioma Research
The dedicated researchers at University of Utah Health discovered one of the paraganglioma genes at the Huntsman Cancer Institute. Patients with a family history of paragangliomas may have a slightly higher risk of getting a paraganglioma, but that is extremely rare.
Hereditary Paragangliomas
A few syndromes increase the risk of getting a paraganglioma. These syndromes may be passed down from generation to generation, such as:
- Familial paraganglioma syndrome and
- Von Hippel-Lindau syndrome, which may only be associated with developing certain kinds of paragangliomas.
Genetic Testing
Our doctors may recommend genetic testing for you and your family members if you have one of these syndromes. That is because the children of patients may have a higher chance of having the same syndromes and could have a higher chance of getting a paraganglioma.
Diagnosis
Biopsy
Your specialist will also do a biopsy during surgery to confirm a diagnosis, but typically we are able to identify a paraganglioma before surgery with imaging tests such as an magnetic resonance imaging (MRI) or computerized tomography (CT) machine.
Are Paragangliomas Cancerous?
Very rarely, but a paraganglioma that spreads throughout the body (metastasized) is cancerous or malignant. A malignant paraganglioma can spread to the bones, liver, lymph nodes, and other locations.
Paraganglioma Treatment
A combination of medicine, surgery, and radiation may be used to treat your paraganglioma. Your doctors will recommend their approach based on its type (benign or malignant) and where the tumor is located.
Surgery
Paragangliomas are typically removed completely through surgery.
In rare cases, a paraganglioma tumor can release hormones after surgery. If your tumor secretes hormones, your doctor will take precautions before surgery to prevent that. You may need to take medication that blocks the hormone’s impacts for a week or two prior to the surgery.
Depending on the location of the tumor, your surgeon will often make an incision between your neck and scalp to access the paraganglioma. During surgery, we will use a large operating microscope that hovers above the body and provides a highly magnified view of the tumor.
Embolization
Your surgeon may recommend this technique to reduce bleeding. This approach can make it easier for the surgeon to remove more of your tumor.
This is done for most paragangliomas the day before surgery. A catheter is inserted into your groin to reach the tumor, clot off the vessel, and choke off the blood supply.
Challenges
No matter how carefully your doctors help you prepare for surgery, you may still experience irregular heart rhythms, large blood pressure changes, and bleeding during the procedure.
After Paraganglioma Surgery
You may need to stay in the hospital for several days after the procedure. Regular follow-up visits with your doctor will check for possible recurrence.
Radiation
Doctors will target the tumor with stereotactic radiotherapy in a single dose of radiation. Occasionally multiple doses are needed. The goal is to decrease the impact on the nearby healthy tissue. The impact of radiation may not be seen for years.
The outpatient procedure does not cause hair loss. However, you may experience hearing loss over a period of years as a result of radiation.
In very rare cases, radiation can convert a benign (non-cancerous) tumor to cancer. As a result, doctors often do not treat younger patients with radiation.
Find a Specialist
If Paragangliomas Recur
If the tumor comes back, your doctors may remove it again through another surgery. That can mean removing nearby tissue. Depending on the location of the growth, the best approach may be radiation.
Next Steps
If you believe you need an evaluation for a paraganglioma, you can make an appointment with one of our skull base tumor specialists.
No doctor referral is necessary to visit us, but please check with your insurance first as some insurance companies require referrals.
Get a Consultation
Not located in Utah? You can contact us for a consultation. Once we have scheduled the call, we will set up a phone call to discuss your diagnosis with you. We will also ask you to send us:
- Copy of the CD of your MRI images,
- Copy of your audiogram (hearing test), and
- Copies of any balance testing (VNG) or auditory brainstem response (ABR) tests.
Contact the Destination Care Program
The Destination Care Program is an initiative by U of U Health focusing on care for our out-of-state patients. We are here to help you find the services and information you need. Feel free to contact us:
Email: DestinationCare@hsc.utah.edu
Phone: 801-587-6365