Listen to Your Symptoms
One patient advocates for earlier detection of ovarian cancer’s quiet signs
Janet Schuler, 50, doesn’t buy into the belief that ovarian cancer is a silent killer, with quiet symptoms that don’t speak up until it’s so advanced that a cure is not possible. "Ovarian cancer does speak," she says. "We just need to know how to listen."
Schuler was 42 in 2009 when she began to feel bloated. A wife, mother and registered nurse working full-time with special needs children, she was busy living and going to school to become a nurse practitioner. She also noticed some changes in her bowel habits and an increase in gas.These are symptoms of ovarian cancer, but they are also commonly seen in perimenopause and in gastrointestinal problems. Schuler saw her primary care doctor and was tested for celiac disease. Her lab tests came back normal.
At a visit with her gynecologist, he suspected perimenopause.
Schuler’s symptoms persisted for eight months, a period of time when she tried to live with being bloated and gassy, a time when she cancelled another doctor’s appointment because she prioritized other things.
Finally, a gastrointestinal specialist found and drained 2.5 liters of fluid from her abdomen. She was diagnosed with stage III C ovarian cancer.
Her first step was debulking surgery, common in ovarian cancer patients, to remove as much cancer as possible throughout the abdomen.
"Had my diagnosis been made when I first had symptoms, it could have made the difference between a cancer that is curable and one that is seemingly not," she says. "If new and unusual symptoms persist longer than two to three weeks, see your doctor, preferably a gynecologist."
Cancer brings profound change
Schuler never expected to live seven years after her diagnosis. She has adapted from being a caregiver to being the patient. She undergoes regular chemotherapy treatments at the University of Michigan Rogel Cancer Center.
"Due to the challenges of detecting ovarian cancer at early stages, most women have stage III disease at diagnosis," says Karen McLean, M.D., Ph.D., an oncologist and cancer biologist at the Rogel Cancer Center. "Significant research efforts are underway to both increase early detection and improve treatment options."
In 2014, Schuler took a medical retirement in order to focus on her health and family. She set a goal to watch her youngest daughter graduate high school. She has alternated between infusion and oral chemotherapy and undergone several surgeries.
"As time went on, I realized the importance of being my own health advocate. I also try to advocate for other women with ovarian cancer. Instead of working as a nurse, I now take my nursing background and educate people about ovarian cancer," she says.
Schuler met Pam Dahlmann, a registered nurse who established the Michigan Ovarian Cancer Alliance in 2011 after losing her mother and grandmother to ovarian cancer. The goal of MIOCA is to save women’s lives by promoting the early detection of ovarian cancer and research for better treatment outcomes. They also have support groups in four cities across Michigan.
"When my mother was diagnosed, there were no support groups. Thanks to volunteers and advocates like Janet, we now offer support to women, including Janet. She is reaping the benefits of what she’s helped create," Dahlmann says.
Schuler co-facilitates the Teal Sisters support group at the Ann Arbor Regent Hotel and Suites, which meets the fourth Wednesday of each month at 6:30 p.m. Teal is the color of the ribbon that represents ovarian cancer. She also volunteers to educate health professionals and the general public about signs and symptoms of ovarian cancer.
Unlike many cancers, ovarian cancer does not have a screening test, such as mammography for breast cancer. Because ovarian cancer is less common and less talked about than breast cancer, research funding has lagged behind. A breast cancer diagnosis is 10 times more common than ovarian cancer.
- pelvic or abdominal pain
- difficulty eating or feeling full quickly
- urinary symptoms (frequency, urgency)
"Hopefully research can unveil new strategies for ovarian cancer prevention and early detection so that we can improve patient outcomes," says McLean.
"I want research for ovarian and other aggressive cancers to be as visible as breast cancer. I want to watch the mortality rates decrease as much as our pink counterparts have," Schuler says.
Schuler attended her youngest daughter’s graduation last spring. She is planning to attend college to become a nurse. Schuler’s oldest daughter is in medical school.
"Last summer I was dealing with a chronic bowel obstruction and was not feeling hopeful. Through God’s grace and a wonderful medical team, I got past it and ended up having a great year," she says. "Right now I’m feeling good and will stay involved with MIOCA because it’s a great way to help."
Read the Fall, 2017 issue of Thrive.