Living Successfully with Ovarian Cancer
By April Terreri

Continued

Lynn’s journey began when she was diagnosed with the disease during a routine gynecological exam. Despite the frightening news that she had ovarian cancer, the fact that it was in the early phase of Stage 1 offered a glimmer of hope. “Statistically, there is usually no recurrence of the disease when it is discovered in Stage 1,” she says. She underwent a hysterectomy immediately. But three years later, the cancer recurred and in the last eight years, she has had four recurrences which required three surgeries, four courses of chemotherapy, and one course of radiation.

Choosing a Treatment Approach
Believing in combining the best of both worlds, Lynn chose a complementary approach to her treatment. She sees both a gynecological oncologist as well as a holistic physician. “I take a lot of different vitamins orally. I also take a high dosage of Vitamin C once a week. I believe the Vitamin C helps my immune system to better tolerate treatment and I am hopeful it also will help lengthen the time between recurrences. I really believe I would not have been able to work full time through all of this over the last eight years if I wasn’t using some of these complementary therapies.”
Lynn says the approach a woman chooses is really a very personal decision and that some women choose to use a traditional approach exclusively. “My feeling was I needed to be doing something else and I think I am coping better because I believe I am covering all my bases.”
Knowing that working would help her cope better, Lynn continued to work full time as a healthcare administrator, taking time off only for her surgeries. With her mind focused on her work, she didn’t have time to think about the disease. “I worked through my chemotherapy and radiation treatments. I think I was able to do this because of the medications available to treat the side effects of these treatments such as anemia, nausea, and reduced white blood cells.”
In addition to her work, Lynn’s personal support network played a major role in lending her the strength she needed to cope successfully both physically and emotionally. Her husband and two sons, several close friends, and her faith were extremely important to her during the trying times. She also found a broad base of support through the people at the Pittsburgh chapter of the National Ovarian Cancer Coalition (NOCC).
When she had her first recurrence of the disease, Lynn contacted NOCC who linked her to another survivor through its Picking up the Pieces (PUP) program. “It was helpful to have someone to be able to talk to who had gone through the same things I was going through. It was a wonderful experience because the woman they linked me to really clicked with me. She also helped me through the process of hospital and insurance issues.”

Seek a Gynecologic Oncologist
Women diagnosed when their disease has reached Stage 3 or Stage 4 face a ‘grim’ prognosis, but Lynn still is hopeful for them. “I am a person who sees the glass half full. Even at these stages, about 90 percent of women can get into remission with surgery and chemotherapy. But that doesn’t mean it won’t recur.”
She urges women to seek help from a specialist in the treatment of ovarian cancer, namely a gynecologic oncologist. “They will do the best job to get rid of the majority of the tumor while recommending the best type of chemotherapy.”
There are no known causes for the disease, but a woman’s family history offers clues to her risk of developing ovarian cancer. Having a mother or sister with the disease increases her risk factor. Yet only 5 percent to 10 percent of ovarian cancers are considered to be familial. Other factors that increase risk include age, infertility, and a personal history of previous cancers. The median age at diagnosis is 63.
“About the only thing we do know that substantially increases your risk is if you have a mutation in a particular gene,” Lynn reports. Blood tests (BRCA 1 and BRCA2) can indicate if that mutation is present. If the gene is mutated, a woman can expect her risk to increase between 40 percent and 60 percent. Lifetime risk for the general population is 1.8 percent.

Listen to your Body
About 90 percent of women who have the disease report they experienced some symptoms, but those symptoms are very subtle. “A lot of these symptoms may mimic other diseases,” explains Lynn. “For instance, women might think the extra weight in their bellies is due to menopause. Or that a change in their bowel habits could be due to irritable bowels. So the symptoms are so vague that women might think nothing of them, thereby delaying diagnosis.”
Having one of the more aggressive forms of the three types of ovarian cancer and delaying diagnosis could be brutal because the disease could spread out of the pelvic area into the abdominal cavity. “About 80 percent of all women with ovarian cancer are diagnosed in Stage 3 or Stage 4 and this is very alarming,” Lynn notes. “This is another reason I am so passionate about education and outreach because there is no diagnostic screening tool for ovarian cancer. So this means we have to rely on women to know their own bodies so they can recognize the symptoms in order to detect the disease early.”
Lynn’s advice to all women is to watch for those subtle signs. “If you have symptoms that persist for two weeks or longer, make sure you get an appointment with your gynecologist right away.” She urges women to be aggressive if they are not satisfied with what they expect from their doctors. “A delay in diagnosis can decrease your odds for survival significantly.”
For women with ovarian cancer, Lynn advises them to get treatment in a national center of excellence in a hospital in a major metropolitan area with gynecological oncologists on staff. “You want to make sure you are getting the most up-to-date treatment and clinical trials that are available. You also want to make sure you have a strong support network throughout your journey with this disease.”
Recently elected president of NOCC (for which she served as a board member for two years), Lynn is active in education and outreach programs, speaking to a wide range of community and professional groups including women’s clubs, church groups, schools of nursing, physician organizations, and nurse practitioner programs. She is determined to spread the word about earlier diagnosis of this disease.
NOCC offers monthly educational sessions at Magee-Womens Hospital of UPMC or Gilda’s Club of Western Pennsylvania. The schedule of sessions is available at the NOCC Web site, or by calling (412) 661-1095.
“Women with ovarian cancer and their families can find lots of support here,” Lynn says. “We also do several fund-raising events annually to support our mission.”
The upcoming fund-raising event will be the Walk for Ovarian Cancer in North Park on Sunday, September 14.

“About 80 percent of all women with ovarian cancer are diagnosed in Stage 3 or Stage 4 and this is very alarming… there is no diagnostic screening tool for ovarian cancer. So this means we have to rely on women to know their own bodies so they can recognize the symptoms in order to detect the disease early.”
-Lynn Giglione

For more articles, download the Summer '08 issue (PDF)