To those who have not been personally touched by brain cancer, the word glioblastoma may carry little meaning. For some, like Kathleen Rhodes, this word means everything. Glioblastoma has changed her life and threatened to take it twice. For 20 years, Kathleen has fought this rare disease. “They told me I had six to nine months,” she recalls of the conversation she had with doctors when she was first diagnosed with an aggressive and highly malignant brain tumor in 1993. She underwent brain surgery to remove the tumor. “The fact that I survived is a miracle,” she says.
Looking back to any potential signs of the brain tumor, Kathleen says she remembers have difficulty completing tasks and thinking clearly in 1992. Immediately prior to her diagnosis, she experienced numbness in her face, like she had been to the dentist. At first, she thought she was having a stroke or developing Bell ’s palsy, facial paralysis resulting from nerve dysfunction. An MRI found the first tumor.
Following her surgery Kathleen returned for regular follow ups and annual MRIs every May with her surgeon in Louisiana, where she lived at the time of her first surgery. Back in Sand Springs on June 1, 1995, just a few weeks after a clear MRI, she was preparing for her 18 year old son’s high school graduation, but started not to feel right. This time she saw bright, flashing lights. Kathleen laid down to rest. Then she started having seizures and her family decided it was time to go to the emergency room. The glioblastoma was back.
Kathleen knew from everything she had read about brain cancer that glioblastoma was one that was hard to beat. Typical survival rates for adults with glioblastoma today are around 2 to 3 years, with only 10 percent of adults surviving more than 5 years. The prognosis was worse 20 years ago when Kathleen was searching for every bit of information on her brain cancer.
“I was told I wouldn’t live through the weekend, to go home,” she says of being told the brain tumor returned. She went back to Louisiana to her surgeon, who told her he didn’t think her survival odds were better with surgery either, but she had no other option. “If we did nothing at all, I only had a few weeks,” she says.
Glioblastoma tumors are highly malignant because they reproduce quickly, supported by a large network of blood vessels feeding the growth. They are difficult to remove completely with surgery, as their finger-like tentacles spread throughout the brain. Kathleen was told at the time she decided to have the second surgery that her tumor was doubling in size every 10 days.
Today, Kathleen returns to Bailey Medical Center every May for her annual MRI. She has been cancer-free since her 1995 surgery and remains cautiously optimistic each year that will continue to be the case. Appropriately, May is National Brain Cancer Awareness Month. Kathleen would like others who first hear the word glioblastoma to find survival stories and not to be frightened by everything they read about this type of brain cancer. “There are those of us out there who survive,” she says. “A lot of people get really devastated, but there is progress being made.”