With breast cancer in the public awareness spotlight, ovarian cancer patients feel left in the shadows
"The other grocery shoppers looked on in stunned silence. Some crazy woman was actually complaining because the store was filled with pink ribbon displays and proclamations that 'October is breast cancer awareness month.'"
"What heartless person would complain about such a thing? What about me?" was the anguish Cynthia (not her real name) felt.
"Cynthia" is a real person in the Prescott community but she prefers to remain anonymous to protect her family.
Two and a half years ago, Cynthia was diagnosed with late-stage ovarian cancer and endured five hours of surgery, which involved a total hysterectomy, appendectomy, removal of lymph nodes, her omentum (a fold of peritoneum that connects the stomach with other abdominal organs) and part of her intestines.
"I almost died," she said.
She spent 10 days in the hospital, three of those on a ventilator, and had a second surgery a year later.
"I have driven myself four hours to chemotherapy on 19 separate occasions," she said, "and have been given five different chemotherapy drugs, blood transfusions and too many shots to count - all while trying to stay positive for my husband and school-age children."
As Cynthia points out, mammograms detect breast cancer, but no approved early screening exists for ovarian cancer. M.V. Patel, M.D., of the Northern Arizona Tumor Institute confirmed this fact and said, "There will be a few fortunate women who can be diagnosed early." As D.J. Patel, M.D., also with the tumor institute, said, "Sometimes it's hard to find in early stages, and isn't discovered until it's symptomatic."
Bloating, pelvic or abdominal pain, difficulty eating, indigestion or feeling full quickly, urinary urgency or frequency, constipation or change in bowel habits, back pain and menstrual irregularities are among the signs.
But, because these symptoms are often vague, women overlook them or they are misdiagnosed. Cynthia believes she was misdiagnosed with premature menopause 15 months before her cancer diagnosis, when the disease may have been in its early stages.
"Just three days before my diagnosis, the emergency room told me I was simply constipated," she said.
According to the American Cancer Society, ovarian cancer is the eighth most common cancer among women, excluding non-melanoma skin cancers. It ranks fifth in cancer deaths among women, accounting for more deaths than any other cancer of the female reproductive system.
Breast cancer, on the other hand, is the most common cancer among women, except for skin cancers, and is the second-leading cause of cancer death in women.
As Dr. D.J.Patel said, because it is not as common as other cancers, ovarian cancer does not get the same attention. American Cancer society statistics show that if ovarian cancer is found and treated before the cancer has spread outside the ovary, the five-year survival rate is 93 percent. However, less than 20 percent of all ovarian cancer is found at this early stage.
"I recognize that 40,000 Americans die from breast cancer each year," Cynthia said. "But it is not the only cancer and it is nowhere near as deadly as ovarian cancer. In fact, ovarian cancer survival is 43 percent less than that of breast cancer. Most patients respond to chemotherapy, but this cancer tends to come back again and again. For 70 percent of ovarian cancer patients, the reoccurrence is 70 percent or higher.
"Were I to ask 100 random people, it's likely all would be aware of the importance of mammograms. Were I to ask the same 100 about ovarian cancer, most would know little of this cancer and assume it can be diagnosed through regular pap exams. It cannot," Cynthia said.
"The cashier to whom I blurted my feelings about the sea of pink responded, 'Why don't you raise awareness?'"
Cynthia's response to that is that she has tried with letters and phone calls, "but it seems to largely fall on deaf ears.
"Ovarian cancer doesn't have a sea of now healthy women to proudly claim they survived. It isn't a happy, feel-good story. Many die and the ones who live are busy getting treatment, searching for hope amid a lava field of bad statistics and trying to carry on with their lives. As a group, ovarian cancer patients aren't well enough to participate in happy, feel-good media moments. Many women may be conflicted as I am - feeling like we should speak out for the public good but not wanting to draw attention to ourselves."
Cynthia is speaking out now. Her words in an essay that she wrote plead for equal attention to ovarian cancer, and she urges donating to the Ovarian Cancer Research Fund or the Ovarian Cancer Alliance.
According to the Ovarian Cancer Research Fund's website, it is the largest private financing agency supporting ovarian cancer research. The Ovarian Cancer National Alliance heads up an initiative to significantly reduce the number of deaths from ovarian cancer and ultimately conquer the disease, its website says. Both have links that facilitate contributions to this cause.
"More awareness of ovarian cancer could save lives," Cynthia said.
"We could use some help."