Brick Township Bulletin

Edison woman’s nonprofit links benign brain tumor survivors
June 5, 2013
BY REGINA YORKGITIS

Beth Rosenthal (c), Metuchen resident and benign brain tumor survivor, is joined by her parents, Jerry and Judith Rosenthal, at a Brain Tumor Awareness Month event at Robert Wood Johnson Hospital in New Brunswick, where they represented the nonprofit It’s Just Benign.

Five years ago, an Edison resident launched a social networking website to connect benign brain tumor survivors. Today, It’s Just Benign (IJB) has evolved into a nonprofit organization reaching more than 1,000 members worldwide.

“The Internet has really allowed members to take control of their own body and their own life,” IJB founder Beth Rosenthal said. “It [has] ended the isolation that survivors feel.”

For Brain Tumor Awareness Month, Rosenthal shared her story at Robert Wood Johnson Fitness & Wellness Center in New Brunswick on May 22.

As a kid, Rosenthal was a gymnastics enthusiast.

“I lived for no-handed cartwheels,” she said.

But in 1985, Rosenthal lost her drive to practice the sport when she was 11 years old. She regularly visited the school nurse, complaining of nausea. When her speech therapist noticed a change in her voice, her mother took her to the doctor.

After an MRI, Rosenthal was diagnosed with a brainstem glioma, a benign brain tumor. Her tumor was not cancerous, but it could eventually prove fatal because of its location.

Two craniotomies and weeks of radiation therapy later, she was free to return home. Yet, she could hardly return to normal life.

“Benign brain tumors have side effects,” Rosenthal said. “But brain surgery has side effects too.”

Although her tumor was gone, the effects of brain surgery cost her more than a decade of her life.

Rosenthal’s side effects included weakness on the left side of her body, hearing loss in her left ear and trouble balancing. From ages 16 to 28, she suffered from trigeminal neuralgia, or excruciating facial pain.

“It’s hard to fulfill your dreams when you are in agony,” Rosenthal said. A graduate of Moravian College in Bethlehem, Pa., Rosenthal had always intended to earn a doctorate in sociology, but her pain forbade her to continue schooling. Her experiences led her into a deep depression.

“Pain wasn’t studied in those days, and the Internet was barely around. And no one wanted to get a teenage girl addicted to medicine,” she said.

Her daily anguish ended in 2002 when she met a pain doctor. She still doesn’t hold a cup of hot coffee in her left hand, but she is able to drive.

In addition to operating IJB, Rosenthal works in finance.

She launched IJB in 2008 because she wanted to connect with other survivors. Even in her brain tumor support group, benign brain tumors were referred to as the “good kind of brain tumor.” There was little understanding of the physical, psychological and social side effects of a benign brain tumor.

Subscribers to the site can talk about their mobility, faith, careers and various other issues with which they’ve dealt after being diagnosed with a benign brain tumor. Doctors offer medical advice, and a comedian writes a “Joke of the Month.”

Rosenthal hopes to further expand IJB globally in the future. On her trip to Paris, a member of IJB traveled 300 miles just to meet her.

She wants “all hospitals to tell patients with benign brain tumors that IJB is available to provide services that help offer support once they leave the hospital.”

“ ‘Your tumor is out — go live,’ is not OK,” Rosenthal said. “Not when you can’t walk and have chronic pain. IJB wants to get a better system in place.”

Volunteers, sponsors and physicians interested in helping the cause, along with those dealing with benign brain tumors, are encouraged to visit www.itsjustbenign.org.