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There are many ways you can help children and their families get the care they need.
EHE is a complex condition. Children with EHE often need care from doctors with many different backgrounds. Some specialists your doctor may recommend for your child include the following:
Your care team will outline the benefits of all the EHE treatment options listed below:
Observation—If there are no symptoms or evidence of progression, your child’s doctor may want to simply observe the tumor for a period of time. Observation allows your child’s care team to determine how the tumor is behaving and if treatment should be considered. In rare cases, the tumor may shrink or even go away without treatment. If the team notes growth in the tumor, we will review options for further management with you.
Surgery—If your child’s tumor is small and/or in an easily accessible spot, your doctor may recommend an operation to remove it.
Medication—If your doctor thinks it’s not possible to remove the whole tumor surgically — or if there are multiple tumors in several locations—we may discuss medical therapy options to slow the growth of the tumor by interfering with abnormal cell growth.
The goal of medical therapy is to relieve symptoms and prevent further growth of the tumor. Medications may be used in combination and sometimes the first regimen isn’t successful and others may be recommended. While there is no current drug that specifically targets EHE cells, some tumors shrink and even become invisible with therapy.
Some of these medications target blood vessel formation (anti-angiogenic), while others are categorized as “chemotherapy,” meaning they may also be used for cancers. They need to be given and monitored by an experienced hematology/oncology team. We work closely with Dana-Farber/Boston Children’s Cancer and Blood Disorders Center to administer chemotherapy for EHE.
Individual medications on this list do not lead to all the side effects many people associate with chemotherapy. Your doctor will explain common and uncommon side effects for the particular medications relevant to your or your child’s case.
In very aggressive cases (or situations where your child’s tumor doesn’t respond to any of these therapies), your doctor has other options:
We want to maximize the safety and effectiveness of whatever therapy you and your child’s doctor decide upon. Supportive care involves preventing and treating infections and side effects of treatment to keep your child as comfortable as possible.
Your child should have regular follow-up during and after treatment to check for recurrence of the tumor, any drops in platelet count or growth of the lesion. Your child’s health care team will give you a schedule of follow-up care to see how your child is responding to therapy, and to monitor for any late effects of therapy.
Depending on your child’s symptoms and the progression of the disease, we may bring in the following specialists.
EHE is such a rare condition and behaves so differently from person to person that it’s difficult to determine the long-term outlook for your child.
The prognosis for your child greatly depends on:
If we can completely remove the tumor surgically, it will most likely not come back. However, complete removal is not often possible due to the size, location or multiple sites of tumors. Remaining tumors may require further therapy and there is a risk of tumors coming back after treatment.
Epithelioid hemangioendothelioma: Reviewed by Cameron Trenor III, MD, © Boston Children's Hospital, 2015
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