Ependymoma Awareness Day--April 19, 2012

I imagine that having an ependymoma (my brand of brain tumor) is like living on the dark side of the moon. It's dark and cold. If the tether holding me to this world breaks, I may drift into the dark black hole of space. Few people go there. Few people even look there. There's a strange beauty in it all.

“Why is there a national ependymoma awareness day?” you may wonder. “Hardly anyone has one.” Exactly. Ependymomas, which generally occur in the brain or the spine, are rare tumors in children and even more rare in adults like me.

In trying to figure out what rare means in this case, I asked my dad, a pediatrician for a gazillion years, how many patients with brain tumors his practice saw over the years. “Six.” And how many of those were ependymomas? "None." And these tumors are more common in children.

A man in my online support group said that his doctor told him that ependymomas occur in one of 350,000 adults around age 50. That would be two adults in Seattle, where I live, or one in Raleigh, NC, where I grew up. That’s not very many.

Because they’re so rare, not much is known about them. These tumors are probably different kinds of tumors that are classified as one right now because we don’t know much. Treatment regimens generally involve surgery and radiation and sometimes chemotherapy, especially with recurrences.

When I had my second tumor, the doctors on tumor boards seemed to have a great time debating the best treatment for me. Opinions ranged from “do nothing” to “do surgery, radiation, and chemotherapy.” I was not having a great time. It’s hard to be just beyond the scientific horizon.

Doctors don’t even agree about whether or not this tumor is a cancer. My neurosurgeon wrote in a book that all brain tumors are cancers. My radiation oncologist, a doctor at the same health center, assured me that this is not a cancer. The World Health Organization says that only grade three epedymomas are cancers, though any of them can spread and recur. Life insurance companies treat all ependymomas as cancers, so that someone with an ependymoma can’t get life insurance until they’ve had a stable MRI for eight years.

We need more research so that diagnosis and treatment might be clearer. That’s why the Collaborative Ependymoma Research Network (CERN) is working to raise awareness on National Ependymoma Awareness Day, April 19.

Ironically, the WHO won't classify the tumors as cancerous until more research is done, and research costs money. Funds designated for cancer research can't be used for researching ependymomas because more research needs to be done. You're smart. You see the problem.

CERN is releasing butterflies as a symbol of hope that research can bring. So put on your butterfly pin or your butterfly costume and tell a friend that you know someone who needs your help. That’s me.