'Not a death sentence': Brain tumor survivors join together
Members of support group for brain tumor survivors and those battling illness say diagnosis can be a life-changing experience.

By Scott Hilyard
COPLEY NEWS SERVICE

Peggy Flannigan wasn't too worried.

So mild were her symptoms -- occasional forgetfulness, suddenly sloppy handwriting -- that when her doctor approached her with results of her MRI, she was caught unprepared.

"Peggy," he began, "you have a brain tumor."

"You could have knocked me over with a feather," Flannigan said at her home in Tremont, Ill. "It took a long time for the information to sink in." Every year, nearly 41,000 Americans hear the words Flannigan's doctor spoke to her two years ago.

Primary malignant tumors -- tumors that originate in the brain, not those that have spread from another part of the body -- are the cause of 13,000 deaths in the United States every year. They are the second most common cause of cancer death for children and the third most common for men and women between the ages of 20 and 39. The common perception is that a diagnosis of a brain tumor is tantamount to certain death. However, that's not the case.

Flannigan and Sally Wecker of Peoria, Ill. -- both members of a support group for brain tumor survivors and those battling the illness -- prove the point. "It's not a death sentence, but it can be a life-changing experience," said Flannigan, who is a nursing professor at Bradley University in Peoria.

In the summer of 2002, Flannigan experienced changes in behavior that were more noticeable to others than to herself. "At certain times I had word search problems. I found I couldn't come up with the word I was looking for in conversation," she said. And the quality of her handwriting began to deteriorate.

"It got practically illegible," she said. "But the symptoms were so vague, it was nothing that was really even definable." A tumor was growing inside her skull, pushing into and contorting the size of her brain and beginning to affect its proper functioning.

A brain tumor can affect the entire range of human thought, behavior and creativity determined solely by its location and size. By the time it started to mess with Flannigan's handwriting and memory, it had grown to the size of a tangerine. Her family urged her to see a doctor. "He said he was 98 percent sure it wasn't malignant but that it was something we needed to take care of quickly," Flannigan said.

The diagnosis came on a Friday. Surgeons removed the tumor the following Tuesday. She has been cancer-free ever since, though doctors say there's a 20 percent chance of a recurring tumor. "I prefer to think of it as an 80 percent chance that I won't have another one," she said.

Wecker's story is similar. She was cleaning a fish tank on New Year's Day 2002 with her granddaughter when she tried to respond to a question. "All that came out was 'I-I-I-I-I.' All of a sudden I couldn't get the words out," Wecker said.

Fearing a stroke, she was taken to the emergency room. Tests showed she had an orange-sized tumor pressing against the speech center of her brain. "The doctor said, 'Sally, it doesn't look too good,'" she said. "I thought I was a goner. I had to step back and take a deep breath." Neurosurgeons removed the tumor, and Wecker, like Flannigan, has since been tumor free.

No one is certain what causes brain tumors to grow. It does not appear to be genetic. Environmental causes such as exposure to certain chemicals, living near power lines and excessive cell phone use have been studied, but nothing has been established.

There are more than 100 types of tumors. The two most common -- meningioma and glioblastoma -- are, respectively, the least fatal and the most fatal. The most dangerous tumors are the ones that grow and integrate into the brain, rather than press up against it. But even meningioma tumors -- the type that Wecker and Flannigan had -- can be fatal, depending on where they are in the brain and how big they get.

"I asked what would have happened if I hadn't come in to be tested," Flannigan said. "And (my doctor) said I could have gone into a coma at some point." Something interesting happened to both women following their medical ordeals. Both got actively involved in a support group for brain tumor victims and survivors, and have attended meetings of the American Brain Tumor Association.

"I know people think you put it behind you and move on," Flannigan said. "Moving on doesn't necessarily mean moving away from it." Said Wecker, "You feel very alone when you first learn you have a brain tumor. We're involved because we show that it's not a death sentence."