When doctors announced that Sen. Edward Kennedy had a kind of brain cancer called malignant
glioma, many people hearing the news had probably never heard of the cancer.
For some, however, the diagnosis was painfully familiar. WebMD talked to
three survivors of brain cancer similar to that affecting the senator,
including two who have survived it for more than 10 years. Their advice to
Kennedy: Don't listen to statistics, and don't give up hope.
There is no defined staging system for childhood central nervous system atypical teratoid/rhabdoid tumor (AT/RT). Patients are classified as having newly diagnosed or recurrent disease with or without neuraxis dissemination.
Jim Owens, 46, Minneapolis, vice president of an engineering and
construction firm for air conditioning and heating. Diagnosed originally with
oligodendroglioma of the right parietal lobe in 1998; five recurrences since
then, with diagnosis revised to a mixed or malignant glioma.
A long-time athlete, Jim says his love of sports, as well as his love for
his wife and young son, now 8, keeps him fighting.
The first symptom came out of the blue. "I was training for a marathon and
had a seizure at the end of a workout," he says of that day in
1998, right before the tumor was found. "I had no idea what it was. Half my
body went numb."
Thankfully, friends who were with him insisted he go to the hospital
immediately, despite his protests that he was fine and it was nothing. After a
battery of tests, Jim was told nothing that night. "It wasn't until early the
next afternoon the doctor said, 'It's bad. You have a brain tumor.'"
He was taken into surgery, but then there was more bad news: "The tumor was
wrapped around the motor strip," says Jim, referring to the band running down
the lobe of the brain that controls bodily movements.
So they presented the next options: radiation and chemotherapy.The tumor
began shrinking, and Jim kept fighting. He got married. A year after the
diagnosis, he competed in the Ely Wilderness Trek, a 15-kilometer cross-country
ski race. "I finished, but it wasn't pretty," he says, laughing.
He and his wife, Barb, welcomed a son, Max, in August 1999.
Jim has had multiple recurrences, beginning in January 2003, fighting each
time by seeking out multiple opinions, agreeing to join a clinical trial, and
taking drugs approved for other cancers that might help
his."Every time I would have a recurrence, it would take a couple days to get
myself standing up straight again," he says.