Welcome to my website! My name is Carol Welsh and I'm an eight-year survivor of an
adult ependymoma,
a rare brain tumor. I've had three brain surgeries (the most recent on December 13, 2005), a placement of a shunt,
a course of radiation and in 2005 I began oral chemotherapy called Temodar which did not stop the growth of my tumor.
On March 22, 2005 I started a different "heavy duty" chemotherapy regimen, a combination of IV carboplatin and IV etoposide
(VP-16). I completed three more rounds of the chemo (April 12-14, May 7-9 and May 28-30) to buy some time while I investigated
the possibility of a third surgery. With the recurrent tumor I had headaches, balance problems and severe
double vision. In fact, I had so many physical complaints that I was overwhelmed. For over eleven months I
took a daily dose of Decadron which has its pros and cons - it is a vital steroid to control edema (swelling) around
a brain tumor but it has horrible side effects. Since my third surgery I have struggled to both accept and overcome
my deficits.
I've created this site to help other patients and caregivers learn about adult ependymoma and to give my story as one
example.
Ependymomas are glial tumors which arise from ependymal cells which line the ventricles (spinal fluid spaces) of the
brain and the center of the spinal cord. Ependymomas make up about 5% of the estimated 40,000 primary brain tumors diagnosed
in the United States every year. Ependymomas occur at the peak ages of 5 and again at 34 according to the National Brain
Tumor Foundation. While they are rare in adults, ependymomas are the third most common brain tumor in children. Most
occur in the posterior fossa (the lower back portion of the brain) and of these, nearly all occur in the fourth ventricle.
A 2002 eMedicine report states 5-year survival rates of 76% for adults and a dismal 14% for children. According to the
Chicago Institute of Neurosurgery, about 10% of brain ependymomas will spread to the spinal cord through the cerebro-spinal
fluid.
Ependymomas are classified in four divisions:
1. ependymoma (the general term for the tumor)
2. anaplastic ependymoma (more aggressively growing cells)
3. myxopapillary ependymoma (occurs more often in the spinal cord)
4. subependymoma (grows slower than a typical ependymoma)
Ependymomas are graded using the World Health Organization (WHO) standard - grades I and II are considered
benign and grades III and IV are considered malignant or "anaplastic." However, benign ependymomas can be
anything but benign. "Low grade" is a more descriptive term than "benign." As space-occupying lesions in an
extremely limited space, often they are malignant by location, and sometimes they can recur, perhaps not as fast
as might be the case with anaplastic ependymoma, but they can recur nonetheless. Mine recurred the first time after
three years. The location of a brain ependymoma can be devastating. Think real estate as in, "location, location,
location." Where the tumor is and the skill of the neurosurgeon in attempting to remove it are most important.
Some people are wrecked from the surgery to try to remove an ependymoma that might be attached to one or more cranial
nerves on the brainstem. The cranial nerves are twelve pairs of nerves that are the critical sources of a person's ability
to breathe, smell, see, chew, taste, move and hear. My surgeries resulted in several deficits because of the "insult"
to some of these nerves. Fortunately, I have regained these abilities at least partially. Some patients, though,
never regain some vital functions, such as their swallowing, walking or speaking ability.
Is this brain cancer? It's not a simple answer. Ependymomas are tumors and they can recur either locally
in the brain or into the spinal cord, so in that sense they are cancerous. However, sometimes they are slow-growing
and do not spread to other parts of the body and in that sense they do not behave like cancer. Most importantly, and
frighteningly, ependymomas, even if benign on the WHO scale, can be deadly simply by their location, either if they grow and
cause death or if they are removed and cause death from the surgery. Ependymomas are treated like many cancers with surgery,
radiation, and/or chemotherapy. New growth of a slow-growing tumor might not show for years. The scary truth is
that any form of ependymoma that is either inoperable surgically or unresponsive to radiation and/or drug therapies
eventually will kill the patient, on a timeline that is specific to the individual case.
