Hemangioblastoma

What is a hemangioblastoma?

A hemangioblastoma is a noncancerous (benign) tumor. It grows from the cells in the lining of a blood vessel, usually in your brain, spinal cord or the tissue at the back of your eye (retina).

When a hemangioblastoma grows, it may press on surrounding tissues and cause symptoms. If you have a hemangioblastoma, your healthcare team will monitor it and might recommend surgery to remove it.

Is a hemangioblastoma cancer?

No, hemangioblastomas aren’t cancerous. But, it’s possible to have more than one in your body. They may grow and press on surrounding tissues, causing serious symptoms.

Who is more likely to get a hemangioblastoma?

Anyone can get a hemangioblastoma. But they’re most commonly found in young adults.

People who have a genetic condition called Von Hippel-Lindau (VHL) disease are also more likely to develop these tumors. Up to 60% of patients with VHL will develop a hemangioblastoma in their eye and up to 80% in their brain or spine.

How does a hemangioblastoma affect my body?

Depending on the location and size of the tumor, a hemangioblastoma may interrupt how cerebrospinal fluid (CSF) flows to your brain. CSF is the liquid that cushions your brain and spinal cord. An interruption in CSF supply may cause headaches or other symptoms.

How common are hemangioblastomas?

Hemangioblastomas make up about 0.5% of all brain tumor diagnoses and about 2% of all spinal tumors. In the U.S., about 24 in every 100,000 adults have a brain or nervous system tumor.

What are the symptoms of a hemangioblastoma?

Hemangioblastoma symptoms can vary slightly, depending on where the tumor forms.

If you have a hemangioblastoma in your spinal cord, you may have:

• Constipation or fecal (bowel) incontinence.
• Urinary retention or incontinence.
• Numbness or tingling sensation.
• Muscle weakness.

Hemangioblastomas in the brain are considered brain tumors. They may cause:

• Balance problems.
• Headaches.
• Nausea or vomiting.

A hemangioblastoma on your retina is an eye tumor. It could cause:

• Retinal detachment.
• Vision loss.
• Eye pain and swelling.

What causes a hemangioblastoma?

Most hemangioblastomas arise with no known explanation. For about 1 in 4 people, the hemangioblastoma is associated with the genetic condition Von Hippel-Lindau disease.

How is a hemangioblastoma diagnosed?

Your healthcare provider asks you about your symptoms, health and family history. They may also use tests such as a:

• CT scan, which uses a series of X-rays and a specialized computer to get images of your internal tissues.
• MRI, which uses magnets to take images of your internal organs and soft tissues.
• Angiography, which uses an injection of a special dye to make a vascular tumors like hemangioblastoma appear more clearly on an X-ray.

How is a hemangioblastoma treated?

Often your healthcare team will recommend surgery to remove a hemangioblastoma. They may use:

• Surgical resection: Your provider uses incisions and surgical tools to remove the tumor. The aim is to take out as much of the tumor as possible while minimizing damage to surrounding healthy tissue.
• Radiation: This treatment uses carefully planned radiation beams to shrink or destroy the tumor. The duration of radiation depends on the tumor’s location and your history.
• Observation: If a hemangioblastoma can't be taken out safely or if you have multiple tumors that are stable or growing slowly, your healthcare team may recommend monitoring with scheduled scans and office visits.
• Medication: Promising research is underway for medications that can stop or shrink tumors. In patients with VHL, one medication belzutifan is being studied.

Can hemangioblastoma be cured?

Every patient’s hemangioblastoma and situation is unique. If a patient has only one tumor and it can be taken out completely, it's unlikely to grow back in the future. Some patients have more than one tumor or tumors in challenging areas. It's important to speak with your healthcare team about what to expect.

Are there other conditions that put me at higher risk for a hemangioblastoma?

Yes. Von Hippel-Lindau (VHL) disease increases your risk of developing a hemangioblastoma.

What is the outlook for a hemangioblastoma?

The outlook for a hemangioblastoma is more favorable if your team removes the tumor completely and the tumor hasn't caused long-term symptoms like nerve damage or vision problems.

After hemangioblastoma removal, you’ll need regular check-ups with your healthcare team. These check-ups increase your chances of finding and treating a hemangioblastoma early if it does grow back.

What questions should I ask my doctor?

If you have a hemangioblastoma, or you think you could have one, you may want to ask your healthcare provider:

• What is the most likely cause of my symptoms?
• What are the chances that I have another condition that caused a hemangioblastoma?
• What are the treatment options for my hemangioblastoma?
• What are the chances that a hemangioblastoma will grow back after removal?

A note from Cleveland Clinic

A hemangioblastoma is a benign blood vessel tumor. It typically grows in your brain, spinal cord or at the back of your eye. If the tumor grows, it can press on your brain and cause neurological symptoms. Usually, healthcare providers remove a hemangioblastoma with surgery. If they fully remove the tumor, the chances of a hemangioblastoma growing back are low.