The Faces of Brain Tumors
Marguerite Sciuk email
Oligo-Astrocytoma Grade II
Diagnosed May 6, 2003
Manakin-Sabot, VA
My name is Marguerite Sciuk, and I would like to tell you about my personal 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 in both frontal lobes. I was discovered by my husband at home, who found me in a Grand Mal Seizure and comatose. Within 3 days a partial resection craniotomy 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 ability in 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 has told me that I have 4 - 7 years to live, and I am 49 years old. For now I am doing okay. I am very fatigued at times, and taking physical therapy to improve arm movement. I 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 almost 10 months may have just found the right combination to reduce the multiple episodes I am having daily.
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 enough to have a sister-in-law who is a medical research librarian who helped my husband and I locate a lot of information on brain tumors. We contacted the American Brain Tumor Association, American Cancer Society, The National Cancer Institute, 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 Brain Tumor Support group in our city (Richmond, VA), and to this day I spend much of my time researching all that I can about the various treatment programs through out the world. I belong to a wonderful web site called BrainTrust.org as well as a similar one in England. I have developed a number of wonderful friends in the US with brain tumors and we support each other in whatever way we can.
After being examined by Johns Hopkins, The Medical College of Virginia and The Brain Tumor Center at Duke, and having sent all of my medical records including my MRIs to Cedar Sinai in California, Columbia- Presbyterian in New York, NW University Feinberg School of Medicine, in Chicago, what I have found out is that each institution has what they believe to be the best treatment program available. What makes this so interesting is that many of them differ. There is NO CURE at present time for my tumor. Having learned this, I now believe that the best approach for me is a TEAM approach where following each MRI (every 8 - 10 wks), I have several different medical institutes 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" period, as recommended by Duke Medical College. My next MRI is scheduled for early April. Basic treatment as recommended by the above mentioned institutions include some combination of surgery, chemotherapy and radiation.
In talking with some of the neurosurgeons and neuro-oncologists they do believe that within 5 – 10 years there will be a breakthrough 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 to obtain more research dollars NOW. It’s wonderful that we have increased awareness of 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:
If it were not for my wonderful husband, Kevin, and all of my loving family and friends, I know I would not be doing as well as I am today. As terrible as this illness is, it has shown me again and again, the comfort and kindness from my family and friends. Kevin and I recently celebrated our 25th wedding anniversary. It has been said that the Brain is that last great frontier of science. With every dollar put towards brain tumor research we are one step closer to a CURE.