Six years ago Lydia Zipp received a piece of news that would change her life forever. A few days before her 34th birthday, Zipp was told that she had advanced stage ovarian cancer.
"I was so young and didn't think it could happen to me," Zipp says. "I didn't know that there wasn't a diagnostic test for ovarian cancer or what the symptoms are. I thought I was feeling lousy because of my lifestyle choices."
Often ovarian cancer symptoms mimic conditions that normally occur during a woman's menstrual cycle. Some common symptoms include abdominal discomfort and bloating, diarrhea, constipation and nausea. Additionally, in some cases, more serious symptoms don't appear until late in the cancer's development.
Unfortunately, like Zipp, almost 70 percent of women with ovarian cancer are not diagnosed until the disease has advanced, significantly decreasing their chance of survival. And although ovarian cancer accounts for three percent of all cancers among women and ranks fourth as a cause of their deaths from cancer, most women don't know how to spot the disease's warning signs.
"Ovarian cancer symptoms can be surprising because they can be abdominal or gastrointestinal, so we don't think of it as a gynecologic problem," says Dr. Bethan Powell, clinical director of gynecologic oncology at the UCSF Helen Diller Family Comprehensive Cancer Center. "Any abdominal or pelvic symptom that is new, persists for two or more weeks, and is associated with other new symptoms or is worsening should be reported to a physician."
After experiencing symptoms for close to one year, Zipp finally visited a gynecologist in Sonoma County in September 1999. She underwent a cervical biopsy and an ultrasound that showed she had fluid blocking her ovaries. Based on these findings, Zipp was then misdiagnosed with fibroids.
By December, right before her birthday, Zipp's symptoms had worsened and she was having so much trouble breathing — a symptom of the cancer — that she visited the emergency room. She had a magnetic resonance imaging (MRI) test that detected ovarian cancer. A few days later, Zipp underwent surgery to remove the cancer at Petaluma Valley Hospital.
After surgery, Zipp started chemotherapy and joined a clinical trial that involved a monthly check-up. During this time, doctors discovered that Zipp's C-125 level had increased. A C-125 blood test measures a substance in the blood that may increase when a cancerous tumor is present. This protein is produced by ovarian cancer cells and is elevated in about 80 percent of women with advanced ovarian cancers and 50 percent of those with early-stage cancers. Zipp also had a PET scan, which detected additional cancer. She was then referred to UCSF Medical Center and Powell for a second surgery.
Powell, an internationally renowned gynecological oncologist and surgeon is also a strong supporter of ovarian cancer survivors and frequently gives talks to survivor groups, such as the National Ovarian Cancer Survivors group.
"I was so fortunate to have a world class facility like UCSF so close to home and have access to cutting-edge treatments and exceptional doctors like Dr. Powell," says Zipp. "From the very beginning, I felt like I was part of the decision making team and involved in my own care."
Zipp also attributes her successful recovery to having her surgery performed by a gynecologic oncologist such as Powell, rather than a general surgeon. She encourages all women to seek treatment from a specialist. According to the National Cancer Institute (NCI), five-year survival rates are much greater if a gynecologic oncologist performs a woman's initial surgery. The initial surgery and staging of ovarian cancer is critical to determining the best course of treatment and ultimately a woman's chance of survival.
"For women with ovarian cancer, the first surgery can be critically important," says Powell. "Gynecologic oncologists are surgeons specifically trained to perform ovarian cancer surgery. In early cases, a careful evaluation of the extent of the cancer can result in cure without any additional chemotherapy treatment. In cases where cancer has already spread, women live longer if all the cancer thoroughly removed."
So far, Zipp has been cancer-free since her second surgery. And not only has her health improved, but so has her lifestyle. Previously, Zipp held a demanding, high-pressure job as a business systems analyst. Now she devotes her time and energy to educating other women about ovarian cancer through an organization she co-founded called the Women's Cancer Awareness Group (WCAG).
The WCAG's Education and Empowerment Program hosts monthly seminars and lectures for ovarian cancer survivors, caregivers and advocates. The organization also produces and distributes newsletters and ovarian cancers symptom cards, as well as reference guides for women with ovarian cancer. In addition, they created and sell special bracelets to raise awareness for ovarian cancer.
"I felt this great need to educate and empower other women," says Zipp. "So I just want to do whatever I can to help the cause. As the saying goes, 'until there's a test, awareness is best.'"
Abby Sinnot is a freelance writer in San Francisco.
Story written in October 2005