Navigating EHE: Connecting with Experts and Support

Support and research for epithelioid hemangioendothelioma are growing for patients.

While epithelioid hemangioendothelioma (EHE) is defined as a significantly rare type of vascular cancer — the disease is identified in every one in 1 million individuals — supportive and credible resources do exist to help guide patients along their cancer journey, explains Dr. Michael J. Wagner.

“As you might imagine, for such a rare cancer, it's hard to find someone who's experiencing what you're going through, or even to find someone, including even oncologists, who have even heard of the disease,” Wagner, clinical research director and senior physician at Dana-Farber Cancer Institute, and faculty member at Harvard Medical School, both in Boston, Massachusetts, said in an interview with CURE.

One such resource is the EHE Foundation, which is dedicated to finding treatments and a cure for the rare cancer through research and collaboration of experts, patients, and caregivers across the EHE continuum.

Between organizations such as the EHE Foundation, worldwide investigational efforts, and an overall push for increased awareness, there is no slowing down the efforts for an improved understanding of the disease and better outcomes for patients with EHE.

“We're trying to get creative about how to get more drugs available for rare cancers like EHE,” Wagner added.

In the interview, Wagner shared information on the EHE Foundation, connecting with EHE specialists, and ongoing efforts to help bring more awareness to this ultra-rare type of cancer.

CURE: What resources exist for patients with EHE?

Wagner: There is a very well organized, EHE-focused patient advocacy group: the EHE Foundation. They really are an excellent, very motivated, very informative group that is a strong advocate for patients with EHE.

It's important that someone with EHE get seen by someone who has experience treating EHE, and that's generally at a referral sarcoma center. Even if that means traveling for an initial consult or something like that—some places will do telemedicine consults—making sure that someone who's at least heard of and seen other patients with this diagnosis is important.

What advice do you have for patients with an EHE diagnosis and are trying to find the right provider for them?

The EHE Foundation knows what cancer centers, and even specific oncologists or surgeons, have experience treating patients with this disease. The EHE Foundation would be an excellent resource to help guide someone to a place that might be both most convenient for them, but also have the knowledge base that it would be a meaningful visit.

Is there anything else about EHE that patients, or even providers, should be aware of?

[It is important to honestly just be aware] of its existence; this would be a major step forward for even most oncologists who really don't have experience or have not seen anyone who has EHE.

Otherwise, even though it's such a rare cancer, there is some exciting research happening, and I'm hopeful that we will make good progress in the near future, both from hopefully my study, but also other studies that have been done or are being considered, or even [treatments being used] off-label. That is another thing that's a big effort now, especially for European cancer centers. They are trying to develop a formalized way to collect evidence and data that might someday lead to drug approvals for such rare cancers, because doing a big, especially randomized, clinical trial is so difficult, if not even impossible [for cancers like EHE].

Transcript has been edited for clarity and conciseness

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