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The data listed on WebMD (this parent site) about the occurrence rate of primary spinal cord tumors is inaccurate. WebMD states that there are approximately 40,000 American develop a brain tumor and 10,000 Americans develop primary or metastatic spinal cord tumors (SCT) each year. This statement is simply not true.

The approximated 40,000 incidence of brain tumors includes SCTs, but does not differentiate primary tumors from metastatic tumors. The actual incidence rate of primary SCT's is 0.57 per 100,000 or 2,503 people over a five year period. Simplifying this to a year average means that approximately 400 people will develop a primary SCT each year, not 10,000 as reported. The chance of developing an SCT is less than 1 in a million, which means you have a better chance of winning the lottery than getting an SCT.

Another misleading theory that doctors believe (if they know anything about SCT at all) is that benign SCTs such as the myxopapillary ependymoma (ME) do not recur. This too is not totally correct. Cancer guidelines consider one "Cured" from cancer if they have a five year period with no new tumors or recurrence of previous tumors, so many patients weren't followed after five years. However the fact is that the odds of a recurrent ME is between 10% and 33% even if the tumor was 100% removed. There are documented cases of tumor recurrence as long as 20 years after the original tumor was removed, and a large percentage of recurring tumors occured many years after initial surgery. Fortunately, the medical community is becoming aware of this and SCT survivors are starting to be followed for longer periods.

I was one of the lucky ones. Although it took me three years to be diagnosed and I made a full recovery with no physical deficit despite a large tumor in my spinal cord, I had to see three doctors before I found one with enough experience to care for me. Even though it's been 17 years since my surgery, my neurosurgeon will order an MRI of my entire spine at the drop of a hat when most doctors would refuse. I am also fortunate that my primary care physician understands the lack of mainstream information that is available on SCT. She listens to what I have to say and is interested in reading any new research or data that I find. Interestingly, two doctors (my PCP and an orthopedic surgeon) this week told me that SCT survivors routinely know more about their condition than most doctors do.

Misleading and incorrect information such as published by the National Institute of Health and posted on WebMD is frustrating and potentially life threatening to people who develop spinal cord tumors. It is critical that anyone with an SCT know the facts. These cases are so rare that most SCT survivors have been misdiagnosed for years leading to paralysis and death. I know of some who were told that their tumor is inoperable which lead to permanent damage, only to find a doctor years later who could have saved their legs. Many of those who were fortunate enough to be correctly diagnosed in the beginning had to see several doctors before they found one who had any kind of experience or knowledge of SCT. I spoke with a research coordinator at the National Cancer Institute this afternoon who told me that CNS tumors were brain tumors and not spinal cord tumors. Whaaat? Since when was the spinal cord not part of the Central Nervous System? I believe I learned different in high school biology! Hearing these words out of someone who most definitely should know better scared me to death because if the NCI can't get it right, then who can we trust?

I guess my point in this is the hope that anyone who has or suspects a spinal cord tumor do serious research on the condition. Do not rely on commercial or consumer sites such as this one and others. The information is either not specific enough or is just plain wrong. There are sites out there and doctors who know how to handle this condition but unfortunately due to posting rules, I am not allowed to mention the one site on the web with correct and accurate information. Find out exactly what kind of tumor you have and research it. I pray you find the site I can't mention because it is non-commercial and truly saves lives.

Jody