State’s brain tumor patients find help in support group

PORTLAND — Roy Hopkins remembers when his children’s school and sports events filled the calendar in the kitchen of his family’s South Portland home.

Now, the days are marked with medical appointments, reflecting a shift in priorities after Hopkins, 41, was diagnosed with brain cancer.

Each year, at least 120 people in Maine are found to have brain tumors. Across Maine and the country, the number has been increasing for the past few years. Scientists don’t know why.

“If you say the word `cancer’ in a crowded room, everybody gets quiet,” observed Mark Estes, founder of the Brain Tumor Support Group of Maine, based in Portland. “If you say `brain tumor’ in a room crowded with cancer patients, everyone gets quiet.”

The support group, which meets twice a month, has become an important part of Hopkins’ life. He describes the meetings as “positive,” although the reason for the alliance is not.

“It’s been informative sharing experiences,” Hopkins said. “I guess it has given me a pretty good, positive feeling after seeing people who have been through more surgeries and whatnot and are still cruising around.”

The group is based on the belief that learning all one can about brain tumors is important for people diagnosed with them.

About 16 patients and their supporters have met twice a month at the Cathedral of the Immaculate Conception Church in Portland since the group’s inception in 1994. In all, about 200 patients and their supporters have attended the meetings.

“It’s made a good amount of difference in people’s lives,” Estes said.

The options when you learn you have a brain tumor usually include some combination of surgery, radiation and chemotherapy. But this unappealing recipe is not always standard. Brain tumors come in all shapes and sizes; there are about 75 types in all.

Some tumors, like Hopkins’, are cancerous, leaving fingers of distorted, hard-to-zap cells mingling with healthy brain tissue even after the tumor has been surgically removed. Some brain tumors are not cancerous, but can grow large as grapefruits, leading to other complications such as brain swelling.

For Hopkins, waiting between office visits has been one of the hardest parts of his battle.

“It’s awful, when you’re waiting for something [and] you don’t know what it’s going to be like,” he said. “We tried to do as much as we could during that time, as far as being a family and being together.”

On July 28, Hopkins had recovered enough from surgery to remove the tumor to begin a series of radiation treatments.

Although the procedure itself doesn’t hurt, radiation causes nausea and fatigue.