Hemangioendothelioma: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 2, 2026.
What kind of doctor treats Hemangioendothelioma?
A primary care doctor is often the first stop. They can examine you, order imaging, and refer you to the right specialist. Because hemangioendothelioma is rare, care usually involves a team that may include a surgeon, an oncologist, a liver specialist, or a vascular specialist.
What it is
Hemangioendothelioma is a rare growth made of blood vessel cells. The name comes from "endothelial cells," the flat cells that line the inside of blood vessels. These growths can behave in different ways. Some grow slowly and stay in one place, while others can grow faster or spread to other parts of the body. Doctors sometimes describe hemangioendothelioma as sitting between a harmless growth and a cancer. Some types are found mostly in babies and young children, while others appear more often in adults.
Symptoms
Symptoms depend on where the growth is located. Many hemangioendotheliomas form in the liver. They can also appear in the skin, soft tissue, bones, or lungs. A growth near the skin may look like a raised, reddish, or bluish lump. A growth inside the body may cause no symptoms until it grows large enough to press on nearby organs.
Causes and who gets it
In most cases, doctors do not know exactly what causes hemangioendothelioma. It is not contagious and usually is not passed down from parents. Some types are linked to specific gene changes in the blood vessel cells. Certain types are more common in babies and young children, while others, like epithelioid hemangioendothelioma, are usually found in adults.
How doctors diagnose it
Doctors often start with imaging tests such as ultrasound, CT scans, or MRI to see the size and location of the growth. A biopsy is usually needed to confirm the diagnosis. This means taking a small sample so a specialist can look at the cells under a microscope and identify the exact type.
Treatment
Treatment depends on the type, location, and how the growth is behaving. Some slow-growing hemangioendotheliomas may only need regular monitoring with scans. Others may need surgery to remove the growth. If surgery is not possible or the growth has spread, other options may include medicines that target blood vessel growth, chemotherapy, or newer targeted drugs.
When to see a doctor
See a doctor if you notice a new lump on your skin, especially one that is reddish or bluish and keeps growing. Also see a doctor for unexplained symptoms like ongoing belly pain, swelling, tiredness, or shortness of breath. If a hemangioendothelioma has already been diagnosed, keep all follow-up appointments so doctors can catch any changes early.
Common questions
Is hemangioendothelioma cancer?
It depends on the type. Some types grow slowly and rarely spread. Others can act more like cancer and spread to other organs.
Can hemangioendothelioma go away on its own?
Some types found in babies, such as infantile hemangioendothelioma, can shrink as the child grows. Most types in adults do not go away without treatment.
How rare is hemangioendothelioma?
It is very rare. Some types affect only a small number of people each year in the United States, and many general doctors may see only a few cases in their careers.
Does a biopsy make the growth spread?
This is a common worry. But a biopsy is a standard and generally safe way to diagnose growths, and doctors choose the method carefully to keep risks low. The benefit of an accurate diagnosis usually far outweighs the risk.
Sources
- NIH Genetic and Rare Diseases Information Center - Epithelioid hemangioendothelioma
- MedlinePlus - Liver Cancer
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
