Advocates Urge Awareness

Advocates Urge Awareness

Ovarian cancer walk takes place in Reston this week.

To advance awareness and raise money for the study and treatment of ovarian cancer, the Northern Virginia chapter of the National Ovarian Cancer Coalition offers its fourth annual 1-Mile or 5k Run/Walk in Reston on May 13.

This year, more than 20,000 American women will be diagnosed with ovarian cancer, according to National Ovarian Cancer Coalition statistics.

Most of them will not know until it is too late, and an organization of men and women in northern Virginia have committed themselves to making sure that it doesn't stay that way.

FIRST GETTING INVOLVED with the coalition after her mother was diagnosed with stage-3 ovarian cancer in January 1999 is public policy consultant Christine Rohrer of Vienna, the president and founder of Northern Virginia's chapter.

"Prior to that I didn't know that you could get ovarian cancer, and I consider myself to be a very medically-aware person," Rohrer said. "I couldn't understand how I didn't know about that."

Ovarian cancer advocacy "is such a passion for me because of what my family went through," she said.

"My mother was such an incredibly healthy person. She was one of those people who was up with the sun every day, she was never sick a day in her life" Rohrer added. "It was such a shock to us when she was diagnosed and we tried to do everything we could, but seeing her deteriorate from a woman who lived every day of her life ... it just ravaged her."

"To see her and how we felt, we were just so helpless cause there was nothing we can do," she said. "I vowed to never let anyone else go through that."

Rohrer founded the Northern Virginia chapter in October 2000 and went to work informing women and doctors about the signs, symptoms and dangers of ovarian cancer.

"The problem is that people have been missing and getting diagnosed late," she said. "We try to increase awareness, but it's not just women, but doctors are not always aware."

Patients who are diagnosed with early, stage-1 ovarian cancer have a more than 90 percent survival rate over five years, while those who are diagnosed in the later in stage-3 or stage-4 have a rate as low as 25 percent likelihood of survival after five years, according to the coalition.

PART OF THE REASON that women aren't typically made aware of ovarian cancer is because that it's not as common as breast and other types of cancers, said Dr. Paul MacKoul, a gynecologist-oncologist at Reston Hospital.

"It's not as common, but it's much more deadly," MacKoul said. "The problem is that it sits in the abdomen of the woman where it is exposed to many other organs and the gastrointestinal tract ... and that makes the risk for the cancer spreading to other places to be that much more prevalent."

One symptom of ovarian cancer is what MacKoul described as "abdominal distention," a condition somewhat similar to the swelling of the stomach. Women may also experience increased levels of fatigue, random pains throughout their body and digestive problems, he added, although not everyone with ovarian cancer has these symptoms and the symptoms might only arise after advanced stages have set in.

What's worse is that the disease is notoriously difficult to detect, especially in the early stages, as no specific test for ovarian cancer exists.

"It's a silent killer," MacKoul said.

"Women come in to their gynecologist and have a pap smear [to test for cervical cancer] and the problem is that this doesn't test for ovarian cancer," he said. "If they don't know about the disease, they can't ask for more specific tests."

IF A WOMAN is having chronic stomach aches and has noticed significant fatigue that can't be attributed to life changes, she would want to set up an appointment with an obstetrician-gynecologist for an examination for ovarian cancer, MacKoul said.

"What's interesting is that only 25 percent of cases of ovarian cancer are handled by oncologists. The other 75 percent are handled by general surgeons," MacKoul said. "We're the experts here and a lot of time the problem is that these people who don't understand the disease ... are mistreating patients."

Although these physicians will be able to run a series of tests such as a CA-125 blood test, which tests blood protein levels for signs of cancer, a pelvic exam and a transvaginal sonogram, they are typically not qualified to fully treat the patient if ovarian cancer is detected, MacKoul said.

When it comes to treatment of ovarian cancer, "the OB-GYN has no clue," MacKoul added. "They don't treat it, it's not part of their training."

"Those people who are going in to treatment or have a family history of the disease need to go to an oncologist," he said.

IT STARTED WITH chronic digestive problems for May Halsall, an Alexandria resident and 63-year-old retired federal employee.

"I was seeing my doctor and getting frequent check-ups and what I was told is that I had irritable bowel syndrome," Halsall said. "I was told that but in the back of my mind I kept thinking of my sister."

Halsall's sister died in 1985 from ovarian cancer, a factor that exposes Halsall to a larger risk of developing the disease, as patients who have had a family history of the disease are at an increased level of vulnerability.

She was diagnosed with stage-3 ovarian cancer in 1998 and has since gone through several treatments and extensive chemotherapy to combat the disease.

Although Halsall says she has mixed feelings about being in the small group of stage-3 cancer patients who have survived for longer than five years, she says that she feels incredibly grateful to be alive. She has since devoted herself to speaking to doctors, patients and "anyone interested" about the disease.

SOMETIMES DOCTORS are able to catch the disease in early stages.

Ann Berger, a 51-year-old business development director who lives in Reston, was fortunate in that her doctors discovered her ovarian cancer at an early-stage during surgery.

She had symptoms that were not identified.

"For six months prior to being diagnosed with cancer I walked around just not feeling well," Berger said. "I had gastrointestinal problems, random pains in my stomach and I was very, very tired."

"I had never ever had a doctor say to me that there is a thing called ovarian cancer and its symptoms are this," she said. "I feel that if somebody had said 'here's the symptoms' I would have put two and two together."

It was only after Berger's stomach pains became so severe that she was hospitalized that doctors discovered the cancer in her ovaries.

Fortunately, the cancer had become "encapsulated" and was therefore not able to spread to other parts of her body, Berger said.

Diagnosed with ovarian cancer in 2004, she was given a clean bill of health in January 2006.

THE EXPERIENCE OF surviving ovarian cancer is one that not only enriches one's outlook of life, but also ushers an increased feeling of responsibility to limit the damage done by the disease, Halsall and Berger said.

"I feel like I've been given a second chance at life and I treasure it a lot more now," said Berger. "I feel like it's my job to let other women know."

"I remember for the first time in my life I heard horses running on the ground and they weren't on television or the radio, and it was a beautiful thing" Halsall said. "I would have never had that experience in my life had I not survived and I appreciated that."

"We really need to get on a roll here and increase the awareness about [ovarian cancer] because ... the symptoms can be so subtle," she added.

"I would like every woman to learn the symptoms of ovarian cancer, just like every woman knows that a lump in your breast could mean breast cancer," Rohrer said. "I want women to know that about abdominal bloating and pain."

THE WALK, which will begin at the Reston Town Center, hopes to achieve that objective.

This year they're expecting to raise their number of participants from last year's 525 to at least 800. They have already raised $92,842 in sponsorships and individual pledges and they're expecting another $15,000 the day of the event, Rohrer said.

"What amazes me is the individual participation ... [there are] lots of people who have committed themselves to this cause," Rohrer said.

"There are a lot of people who are really affected by this disease, and they come to me and say, 'my aunt had that' or 'my grandmother had that,'" she added. "It's really important and a lot more critical for us to let more women learn about it."