Juvenile Nasopharyngeal Angiofibroma (JNA)

Juvenile nasopharyngeal angiofibroma (JNA) is a rare, noncancerous tumor that grows behind your nose. It’s a vascular growth, which means it’s mostly filled with blood vessels.

Breaking down the condition’s name is the best way to understand it:

• “Juvenile” means young person.
• “Nasopharyngeal” refers to the areas around your nose and throat.
• “Angiofibroma” refers to a noncancerous tumor that’s made of blood vessels and connective tissue.

JNA isn’t cancerous. But it’s still serious and aggressive. Nasopharyngeal angiofibroma can spread from your nasal cavity into your sinuses, skull and brain. Without treatment, JNA may lead to life-threatening complications or death. That’s why it’s so important to tell a healthcare provider if something doesn’t seem right. The good news is that treatment can help get rid of the tumor.

Juvenile angiofibroma is most common in males between the ages of 10 and 25. Very rarely, it may occur in males over 25 or as young as 7. JNA almost never affects females.

Nasopharyngeal angiofibroma is very rare. Experts estimate it occurs in 1 in every 150,000 to 1,500,000 people.

Symptoms of JNA

JNA symptoms aren’t immediate. They often start once the tumor grows large enough to interfere with nasal airflow. Juvenile nasopharyngeal angiofibroma symptoms may include:

• Frequent nosebleeds that can be difficult to stop
• Trouble breathing through your nose
• Facial swelling
• Headaches
• Vision or hearing changes

JNA causes

Researchers don’t fully understand what causes juvenile nasopharyngeal angiofibroma. Because these tumors occur almost exclusively in males, hormones likely play a role. Experts don’t believe JNA tumors run in families.

Risk factors

There aren’t a lot of clear-cut risk factors for JNA. Even though the condition isn’t hereditary, you’re more likely to develop JNA if one of your biological family members has another condition called familial adenomatous polyposis (FAP). Experts continue to explore the relationship between these two conditions.

Complications of JNA

If JNA grows, it can press on surrounding facial structures and cause complications like:

• Bulging eyes
• Vision loss

How doctors diagnose juvenile nasopharyngeal angiofibroma

A healthcare provider can diagnose JNA during an examination. They’ll look at your nose and ask about your symptoms. They’ll likely need to run tests, which may include:

• Imaging tests, like CT scans, PET scans or an MRI
• Nasal endoscopy

They may also refer you to an otolaryngologist (ENT) to run more tests or confirm the diagnosis.

How is JNA treated?

Healthcare providers use surgery and radiation therapy to treat JNA.

Surgery

Surgical removal of the tumor is the go-to JNA treatment. A surgeon uses an endoscope (a thin tube with a camera) to do the procedure through your nostrils. That way, they can avoid making cuts (incisions) on the outside of your nose.

In some cases, surgeons might need to make external incisions. If that happens, they’ll make them as small as possible to minimize scarring.

As your nose contains so many blood vessels, providers usually do a procedure called embolization beforehand. Embolization helps prevent blood loss during surgery.

Radiation therapy

It can be hard for surgeons to remove tissue that’s grown into surrounding bone and/or sinuses. If tiny bits of tissue are left behind, the tumor may come back. If that happens, your surgeon might recommend repeat surgery or radiation therapy.

According to some research studies, JNA comes back in up to 37% of cases.

When should I see my healthcare provider?

Keep an eye on sudden symptoms like nasal stuffiness or frequent nosebleeds. You know your body better than anyone else. Be sure to tell a healthcare provider when something doesn’t seem right to you.

What can I expect if I have JNA?

JNA has a high survival rate. The outlook is good with treatment.

Because JNA can come back, there’s a chance you might need radiation therapy or an additional surgery in the future. Your healthcare provider can check in with you periodically and recommend treatment if necessary.