At Children’s Hospital Boston, we know how difficult a diagnosis of epithelioid hemangioendothelioma (EHE) can be, both for your child and for your whole family. It’s a rare tumor that’s not widely understood.
Referring to EHE as a rare tumor often leads to discussion of EHE as a cancer. A tumor is any abnormal growth, while cancer has additional properties, including spreading to distant parts of the body and rapid growth. In some patients, the tumor is stable and sometimes goes away without treatment. In others, the tumor may be more aggressive, metastatic (meaning that it can spread) and even fatal.
As is the case for all rare diseases, we recommended that an experienced team of specialists assist in ensuring your child has the correct diagnosis.
Here’s what you need to know:
- EHE is a rare vascular tumor that arises from the lining of your child’s blood vessels.
- It can appear anywhere in the body, but common sites are the liver, lungs and bones.
- The cause is currently unknown.
- The tumor behaves differently in different people.
- Some are stable for years.
- Some go away without treatment.
- Some grow rapidly, spread and can even be fatal.
- There are several treatments available for epithelioid hemangioendothelioma.
How Children’s Hospital Boston approaches epithelioid hemangioendothelioma
Diagnosing EHE can be difficult for primary care physicians simply because it’s such a rare condition.
In fact, an experienced vascular anomalies center is essential to the care of children with EHE. Such centers have a diagnostic team of radiologists and pathologists and a treatment team of surgeons, interventional radiologists and medical specialists (often hematologists/oncologists) to provide optimal care. However, some centers lack all of the necessary specialists for both diagnosis and treatment.
The Vascular Anomalies Center at Children’s Hospital Boston is the largest in the world, meaning that we evaluate more patients with rare vascular anomalies than anyone else. We consult on the care of children (and adults) with EHE around the world after reviewing their cases in Boston to confirm the diagnosis and advise about treatment options. Once we reach the proper diagnosis, we then determine what sort of treatment your child needs.
| “Helping Your Child with Medical Experiences: A Practical Parent Guide”
Download a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (Adobe Acrobat is required) and read about topics including:
- talking to your child about his condition
- preparing for surgery and hospitalization
- supporting siblings
- taking care of yourself during your child’s illness
- adjusting to life after treatment
Epithelioid hemangioendothelioma: Reviewed by Cameron Trenor III, MD
© Children’s Hospital Boston, 2010