FOCUS ON HEALTH:

NEWPORT BEACH -- In June, Newport Beach resident Ellen Winters Miller celebrated a seventh anniversary of a kind. On June 29, 1999, she was diagnosed with ovarian cancer. During a massage for low-back pain, the therapist noticed a small lump in her stomach, which turned out to be nothing. But an ultrasound revealed another complex cyst, which her doctors suggested they watch for six months. Her obstetrician gynecologist said the same. Not satisfied with these recommendations, she asked for an ultrasound after a month -- the cyst had doubled in size.

“I was very proactive,” she said. “I was uncomfortable with them telling me to wait when something was growing inside me.”

During her laparoscopy, the doctor determined the cyst was malignant and a gynecologist oncologist removed her ovary. Her second ovary was removed, showing two more malignant spots on the underside. Her cancer was in Stage 2C, which meant along with the ovarian masses, she had free floating cancer cells ready to “blow up.” In six days she had two surgeries and two rounds of chemotherapy.

Merle Stern of Newport Beach was diagnosed 10 years ago in Maryland, which she said was “three or four years coming.” With symptoms like severe abdominal pains, she went to a doctor who thought she might have appendicitis, but after some tests found she had a mass on her ovary. Her cancer was diagnosed in Stage 2A — the tumor had broken away and was in a second site. After six months of chemotherapy, she moved from the East Coast to Colorado to be closer to her new grandson. While there, she didn’t feel she had anyone to talk to about her disease, but when she arrived in California five years ago, that all changed.

The two women helped found the Ovarian Cancer Orange County Alliance, a nonmedical network of women and men who have charged themselves with educating those who have been diagnosed or could be affected and, according to them, that’s everyone. Their main goal: To tell their stories to everyone who will listen.

“All I knew when I was diagnosed is that women died,” Miller said, adding that around the time she was diagnosed, when she was in her mid-40s, she had only heard of the disease because of actresses like Gilda Radner and Madeline Kahn, who both died from ovarian cancer.

With the help of a grant from Ortho Biotech, the alliance has published “Surviving Together,” a booklet full of the stories, tips and resources from survivors, including Miller and Stern, who wrote the grant and took all the photography for the journal. The book will go in the group’s comfort bags that are given out every September, which is Cancer Awareness Month.

“Women resonate with being in touch with other women who have gone through the same thing,” Miller said. “It’s that feeling of support — there’s something to be said when you get a phone call from a woman who has gone through cancer treatment.”

What Miller and Stern had yearned for during their treatment, they are now giving to patients around the county.

“We need to let women know who have ovarian cancer there’s hope for you,” she said.

There are real-life emotions tied in with each title including “Being Shocked” for the diagnosis section and “Chemo Brain” for thoughts about memory concerns.

“We wanted to bring it to the most real level,” Stern said while leafing through it.

The group produced about 300 bags this year and, unfortunately, Merle said, every year they need to make more. Regardless of age, women need to be in tune with their bodies and any changes that may occur, the authors said. They also suggest seeing a gynecologist oncologist after a woman is finished having babies and is more at risk for ovarian cancer.

“I’ve always said we as women are completely responsible for our own healthcare,” said Stern, who was in her mid-50s when she was diagnosed. “You have to be aware of your body and be proactive and insist when changes happen that you eliminate every possibility.”