Group works to shed light on ovarian cancer

“September is Ovarian Cancer Awareness Month and we are trying to get the word out about the symptoms, which are vague, so most women don’t want to pursue seeing their physicians about them. There are more women than we think who have ovarian cancer and we are doing our best to get awareness out there as much as pink is out there for breast cancer,” said Mitstifer.

“The connection between ovarian cancer and breast cancer (the BRCA gene mutation has been tied to both) is helping with that.”

Mitstifer is coordinating the National Ovarian Cancer Coalition Tucson Chapter Fifth Annual Teal Tea on Sept. 14 at Loews Ventana Canyon, 7000 N. Resort Drive.

Mitstifer, a 12-year survivor of clear cell epithelial ovarian cancer who was diagnosed at age 30 when she was pregnant, is especially passionate about promoting awareness across the board for women of all ages as well as for physicians and other health care professionals.

“If you don’t have a family history of ovarian cancer (or breast or colon cancer) and don’t meet the criteria but you have symptoms, a women is often not initially recommended to a specialist because people are trained to look for ovarian cancer in older and post-menopausal women,” she said.

“When I look back, I had the symptoms since I was 19. I wonder if more awareness equals more lives saved because the cancer is caught earlier. Many women are not diagnosed until it is too late.”

Because 60 percent of women are diagnosed in Stage III, when the survival rate can be as low as 30.6 percent, National Ovarian Cancer Coalition outreach emphasizes early diagnosis.

It promotes awareness about four main symptoms that may indicate an occurrence of the disease: extreme fatigue; bloating and/or feeling full quickly when eating; bowel issues, which can include constipation, diarrhea, abdominal pain or digestive problems; and bladder issues such as the need to urinate urgently or frequently.

The National Ovarian Cancer Coalition recommends that women see a physician if any of these symptoms persist for more than two weeks.

Mitstifer reiterated that the nonspecific symptoms often make diagnosis more difficult.

“Women think it is all just in their heads or they will just live with the symptoms. I was a person who could have just lived on Midol, since my symptoms were all the same as premenstrual symptoms. So women need to know how to advocate for themselves and tell their physicians they want ovarian cancer ruled out,” she said.

The current limitations of screening tests for the disease is another complicating factor: The CA-125 blood test, ultrasound with transvaginal sonography, a rectovaginal examination, CT scans and X-rays are all diagnostic tools, but a biopsy is necessary to accurately confirm the disease.

Women also need to know that a PAP test does not detect ovarian cancer, a fact of which Mitstifer believes many women are unaware and may contribute to making the disease the fifth-leading cause of cancer-related death among women age 35 to 74.

Breaking the silence surrounding the disease will help improve that statistic, according to Margaret Hoeft, a 10-year survivor and long-time volunteer with the National Ovarian Cancer Coalition.

Hoeft said the local chapter of NOCC is working toward that goal with projects such as the Survivors Teaching Students Program, which offers survivors the opportunity to share personal stories with University of Arizona medical students during their third year gynecology rotation. About a dozen survivors, whose diagnoses span Stages I through IV, are participating.

“It is so rewarding for each of us individually to tell our stories. These students realize that ovarian cancer is not just a diagnosis, it is a person. This is a great program and we are thrilled to be a part of it,” Hoeft said.

The National Ovarian Cancer Coalition (ovarian.org) also provides a range of information, resources and support for survivors and their families; proceeds from the upcoming Teal Tea will be funneled into ovarian cancer research and awareness.

Ultimately, National Ovarian Cancer Coalition volunteers are optimistic that this two-pronged approach will help reduce misdiagnoses, improve screening tests and treatments and hopefully eliminate the disease, according to Tucson Chapter member Shelly Chess, who lost her mother, Vernice Abendroth, to ovarian cancer in 2007.

“I know instances where women are misdiagnosed and didn’t have the right tests and where they kept going to the doctor because they didn’t feel right and were told, ‘It is just menopause,’ ” Chess said. “We really want women to know they need to ask to be tested for ovarian cancer.”