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Brain Tumor Survivor: Ed N.

Ed in 2004

Diagnosis: Anaplastic Astrocytoma 3 1993

Last Updated: 2/28/15

In early 1993 I began experiencing involuntary muscular spasms in my right arm. After a neurological exam focal seizures were suspected. I was sent to have an MRI on April 22 of that year. Barely two hours after the scan I received a phone call explaining that "they found something." Thus began a long, life-altering journey.

The "something" identified on MRI was an enhancing lesion in my left frontal lobe. I was put on anti-seizure medications, which somewhat contained but did not stop the seizure episodes. For several months the lesion was misdiagnosed until the possibilities began to point to a primary brain tumor. I sought additional medical opinions and was told it was likely a low-grade glioma. The strategies offered to me contrasted sharply. The conservative approach was to observe the lesion through time, while the aggressive strategy offered by one neurosurgeon was to remove it surgically. As my seizure episodes worsened and involved more of my body, I painfully weighed these options and decided that the aggressive approach was best. In November 1993 that neurosurgeon, Dr. Keith Black, performed my crainiotomy. Using computer-assisted surgical techniques, he was able to resect the grape-sized tumor that had invaded my motor cortex. The follow-up MRI showed no visible tumor remaining, and after recovering from surgery I discovered my seizures had stopped. The surgery left me unable to move my right hand. I enrolled in occupational therapy. After some weeks of daily work I restored basic functionality to my hand, and today my arm works as well as ever. As the surgeon had predicted, my surgical deficits were only temporary.

However, the final pathology of the tumor was a shock. It was determined not to be low grade, but an anaplastic astrocytoma grade 3. This type of tumor is a malignancy that returns even after surgery and invades deeper into the brain. I was to immediately begin nine months of cancer treatments, starting with chemotherapy to be followed by radiation. The benefit of the treatment plan, a doctor told me, would be to "keep you good for a couple of years."

I began the chemotherapy, a three-drug protocol called PCV, and was scheduled to complete a number of six-week cycles. However, I was only halfway into the second cycle when I became extremely ill. I was allergic to the Procarbazine component, and was in bed for almost a week with high fever and a head-to-toe "sunburn." Reluctantly, the PCV was stopped altogether. I was switched to a single chemo drug called BCNU. I had two cycles of BCNU without significant incident and went on to radiation. Radiation treatments consisted of 33 fractionated sessions. I received a total of 6000 rads, the lifetime limit. Radiation ended in July 1994, although I suffered fatigue for several months afterward. Hair loss was a side effect as well.

Along with medical treatments, I also explored complementary therapies and adopted ones that I felt appropriate. Early on I learned about relaxation and visualization and did a daily exercise. I participated in support groups with other brain tumor survivors where we shared common issues and challenges. I examined my diet, supplements, and exercise and considered moderate changes I might make that encourage a healthier lifestyle. I do not believe these things can cure illness, but I feel they can improve quality of life. I did not use any of the unproven substances or alternative treatments found outside mainstream science, and would not recommend them.

I have been very fortunate to have a full recovery from this tumor. Since 1994 I have had no medical treatments. I have been seizure-free since surgery and no longer require anti-seizure medication. I have had forty MRIs to monitor for tumor recurrence, and every one has been completely clear. I live a daily life as a husband, father, homeowner, driver and full-time worker without restrictions. I have come a long way past "a couple of good years."

Updated 2/28/15

No change!

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