Marguerite Sciuk, Founder
As the founder of B.R.A.I.N., I'd like to thank you for your interest in our organization, and to briefly share with you my own experience as an owner of a brain tumor.
In May of 2003 I was diagnosed with an Oligo-Astrocytoma Grade II primary brain tumor located my left frontal lobe, with some in my right lobe. I was discovered by my husband at home, who found me in a Grand Mal seizure and comatose. Within 3 days, a partial resection was performed and within one week I was able to return to consciousness, and left to cope not only with the diagnosis, but also with paralysis of my right side, word selection problems, and some loss of cognitive thinking. My tumor is very large and only a small portion could be removed. I had no symptoms prior to the Grand Mal seizure. An oncologist in Richmond said that my length of survival from diagnosis date is 4-7 years.
My husband and I knew nothing about brain tumors. I learned quickly about my particular type of tumor and what many people face with brain tumors. I am lucky to have a sister-in-law who is a medical research librarian who helped my husband and I locate information on brain tumors. We contacted the American Brain Tumor Association, American Cancer Society, The National Cancer Institute, The Brain Tumor Society, and so forth. I have reviewed a number of clinical trials and called some of the top brain tumor centers in this country. I became a member of the Richmond Brain Tumor Support Group. I still spend much of my time researching all that I can about this disease. I attend the North American Society of Neuro-oncology and World conferences to better understand current research. I belong to a wonderful website called BrainTrust.org.
After being examined by Johns Hopkins, The Medical College of Virginia, and The Brain Tumor Center at Duke, as well as having sent my records to Cedar Sinai in California, Columbia-Presbyterian in New York, California University in San Francisco, NW University Feinberg School of Medicine, in Chicago, I have found that each institution has what they believe to be the best treatment available. What makes this so interesting is that many of them differ. There is NO CURE at present for my type of tumor. Having learned this, I believe that the best approach for me is a TEAM approach where following each MRI (every 8-10 wks); I have several medical institutions review the records and listen to their treatment recommendations. Based on what each doctor says, my husband and I determine what steps I should take. At this point I am in a careful watch and wait as recommended by The Duke Brain Tumor Center. Basic treatment recommended by the above institutions includes some combination of surgery, chemotherapy, and radiation.
At times I am fatigued, and no longer have the same energy or stamina to accomplish in a day what I used to be able to accomplish. I have tried a multitude of anti-seizure medicines and after 2 years the neuro-oncologist is still trying to determine the right combination to reduce the multiple episodes I have daily. Unfortunately some of the anti-seizure meds resulted in side affects, and none have stopped my episodes.
In talking with some of the neurosurgeons and neuro-oncologists they do believe that within 5-10 years there will be a break through in a cure for some types of brain tumors. Knowing that a possible cure is within our grasp we need your support to increase public awareness about this disease and obtain research dollars NOW. It's wonderful that we have increased awareness about breast cancer, prostrate cancer, and so forth. Increasing research dollars toward advances in early detection, treatment, and a cure for brain tumors is such a wise investment. Current literature on brain tumors informs us of the following: