Brain cancer patients share sympathy, stories of struggle

"It's extremely scary," said Jessica McComisky, with daughter Talia. (Vincent DeWitt for the Boston Globe)

For Patricia Whitman, it began with a smell, not a seizure.

A strange burning odor occasionally filled her nose. In the weeks and months to follow, there were bouts of light-headedness and, later, excruciating headaches. Still, the last thing she expected her doctor to tell her was that she had a brain tumor. And certainly not one the size of a baseball and that came with a terrifying lethal prognosis.

"It's my brain. This is my brain," the 48-year-old psychologist said. "This can't be happening."

In the year since her diagnosis, Whitman has undergone brain surgery, suffered memory lapses, and lost her hair - only to have it grow back gray. While doctors are hopeful she will defy the odds, she lives with an uncertain future. And after she saw news reports of US Senator Edward M. Kennedy's brain tumor diagnosis on Tuesday, she felt overcome with sadness for him and his family. "Those poor people," she said softly yesterday.

The type and size of Kennedy's tumor have not been made public, nor has his course of treatment. But news of the legendary lawmaker's diagnosis sparked national headlines and an outpouring of sympathy from cancer survivors and those still in the throes of treatment.

Treatments and outcomes vary wildly among brain cancer patients, even those with similar diagnoses. While some patients are quickly ravaged by the disease, others defy the odds. Specifics of the senator's brain cancer have not been made public, and Kennedy and his doctors are working to determine a course of treatment. However, the experiences of those who have been treated for brain cancer provide a sense of the challenges.

Many predict he will have a long, difficult journey ahead.

Tziporah Cohen, a psychiatrist specializing in cancer care, said patients must reckon with more than fear of dying.

"It's the road to dying, being in pain, or being a burden to other people," Cohen said. "It's the fear of losing their mind. That can be a particular fear with brain tumors because they can change how people talk, think, their personality."

It's something Beth Finn of Weymouth knows too well. The mother of four boys learned in 2003 that her 12-year-old son, Declan, had an inoperable brain tumor. By the time it was identified, the tumor had grown so large it stunted his learning. It made him drool and prone to what she described as "horrible meltdowns." Doctors treated Declan with high doses of chemotherapy at Lahey Clinic in Burlington that made him vomit and rotted his teeth (he had eight removed).

Throughout the grim treatments, there were exaggerated highs and lows. Subsequent brain scans showed the tumor to be in remission - validation that the difficult measures were worthwhile. Then last Thursday, the family got more bad news. Doctors at Massachusetts General Hospital said the brain cancer had returned.

"I'm numb half the time," Beth Finn said yesterday. "But you just get this inner strength from God and the people around you. When I'm too tired, they hold me up."

Mindy Wanatick has had surgery three times since 2003 to remove malignant brain tumors. The married mother of two children, ages 6 and 1, was diagnosed with a fast-growing brain tumor. Surgeons removed it, and she underwent radiation and chemotherapy treatments with the drug temozolomide. She had to be hospitalized for a month when the treatment caused her white blood cell count to plummet, and she developed a liver infection as a result of the treatment.

The cancer returned to her brain in March 2007. Wanatick had surgery and took the experimental drug, VEGF Trap. Within months, the tumor returned yet again, more aggressively. After another surgery, she took temozolomide and another drug, Avastin.

These days, Wanatick reads more slowly than she used to and she has lost some of her peripheral vision on her left side, which means she can no longer drive. She has difficulty doing more than one thing at a time.

"Now I can't even cook and talk on the phone," Wanatick said.

She enrolled in a support group, found the experience deflating, and quickly dropped it.

"It made me feel worse. People there really had deficits," she said. "I didn't want to deal with it."

Mary Lovely, a nurse at the National Brain Tumor Foundation in San Francisco, said that is one of the main reasons many brain tumor patients avoid joining such groups. Others, however, find them to be a necessary emotional lifeline.

"The camaraderie is extremely important," she said.

Jessica McComisky of Mashpee said that when she was diagnosed with brain cancer in 2003, some of her friendships were strengthened, others were lost. Her tumor was removed, only to reappear in 2005. Now she's in remission again. The 34-year old mother of two said her girlfriends jokingly call her "special" because she has astrocytoma, a type of cancer thought to strike one in 100,000 people. It has a high likelihood of returning, worse than before.

"It's extremely scary, and I remember thinking 'Why couldn't I get [a tumor] in my foot or something,' " McComisky said.

Whitman, who experienced the strange smells prior to her diagnosis, said she has lost some of her memory and has gotten in the habit of writing down anything she needs to remember. Her treatment, which includes temozolomide, also makes her deeply exhausted and able to sleep for hours at a stretch many days. Recently, the resident of Atkinson, N.H., was able to return to work part time.

Since her surgery to remove a glioblastoma, the most aggressive form of brain cancer, she gets MRI scans routinely every three months.

Her anxiety rises in the weeks before the scan, she said. She makes a point of avoiding discussion and research about mortality rates associated with her illness. She said staying positive is key.

"My doctors told me to take it a year at a time," she said. "That was a year ago."