My Wonderful Sister Johanna

My sister Johanna was a robustly healthy and active 54 year old woman enjoying her retirement from teaching when she was diagnosed with an advanced stage of ovarian cancer. Always disciplined about her health care, Johanna was stunned by her diagnosis --- as was everyone who knew and loved her. Johanna had no family history of ovarian cancer. She had been diligent about visiting her gynecologist annually for pelvic exams and Pap smears. She even ate a diet rich in fresh fruits and vegetables, high in soy protein and low in fat, designed to lower her risk for the illnesses that were part of our family history---heart disease, high blood pressure and diabetes.

She also exercised regularly. Even without a family history of cancer, Johanna had adopted recommendations she’d heard or read that recommended including soy and antioxidants in one’s daily nutrition and vitamin regime to lower the risk for various types of cancer. My sister had done everything she knew to stay healthy because she loved life and wanted to be around to enjoy her friends and family and to see her only daughter Wendy marry and have children.

That goal of a long life, however, was cut short. Despite Johanna’s efforts to maintain optimal health, she was diagnosed in January of 1997 with Stage IIIC ovarian cancer, an advanced stage of the disease. Sadly, she learned only in the days following the surgery that confirmed her cancer diagnoses that she had possessed known risk factors for the disease that elevated her risk above that of the general population.

Johanna also learned only after she was diagnosed that the gastric symptoms she had experienced prior to her diagnosis were common symptoms of ovarian cancer. Like so many women I have met since her diagnosis, Johanna had assumed the persistent heartburn, abdominal bloating and constipation she had experienced were related to a gastric disorder for which she had made an appointment to see a gastroenterologist. Never even considering that the underlying problem was potentially lethal, Johanna wasn’t alarmed by the 4-week wait for that doctor’s appointment. She had no idea that she needed the urgent attention of a gynecologic oncologist, a physician specially trained to treat ovarian and other gynecologic cancers.

Upon arriving home from a New Year’s vacation --- and just a couple of days before her appointment with the gastroenterologist --- Johanna called her gynecologist of many years. Her symptoms had worsened and although she still didn’t think the problem was gynecologic, she figured she could get in immediately to see her regular doctor and check out all possible causes of her discomfort.

Her gynecologist did see her right away and after learning of her symptoms, he ordered a transvaginal ultrasound and CA125 blood test. The findings of both tests prompted the doctor to schedule Johanna for surgery the following week. He told my sister he was 80 percent sure she had ovarian cancer based on those test results.

The Shocking Diagnosis

We were all in shock. Ovarian cancer had not ever been on Johanna’s radar screen. We knew of no one in the family who had ever had it. We kept hoping her elevated CA125 was due to something other than ovarian cancer, like endometriosis, which we heard could also sometimes elevate the CA125 above the normal range of 0-35.

That, however, was not to be. During the surgery, Johanna’s gynecologist came out to the waiting area to tell us it was ovarian cancer. He said that based on similar cases he’d seen, she probably had only 12-18 months to live. The gynecologic oncologist called in to assist with the surgery was a bit more optimistic.

Ultimately, Johanna lived 3 and a half years after her initial diagnosis. During that time, she endured four surgeries, multiple rounds of chemotherapy with several different drugs, participation in two clinical trials, weeks and weeks of hospitalization, and a seemingly endless number of CAT scans, blood tests, and pelvic exams.

A recently retired teacher at the time of her diagnosis, Johanna became extremely educated about her disease and very proactive about treating it. She did everything she could to survive and remain healthy. In fact, prior to her last major surgery in January 2000, she maintained her healthy nutrition regimen and even willed herself to walk the treadmill and get back to playing tennis and golf after each surgery and during chemotherapy. Maintaining as much of her normal life as possible, she said, gave her hope about the future and made all the surgery and treatment she endured tolerable.

Sadly, it was all to no avail. Johanna did not beat the odds of her original diagnosis. Statistics indicate that 1 in 5 women diagnosed with advanced stage ovarian cancer survive five years after diagnosis. Johanna was not one of the lucky 1 in 5.

Following a massive recurrence of her cancer, Johanna had major surgery in January 2000 followed by a month in the hospital, which was, in turn, followed by more hospitalizations, more chemotherapy, and participation in a clinical trial. My wonderful sister, obliged to receive nutrition intravenously during the last months of her life, finally lost her determined battle with ovarian cancer on August 29, 2000, at age 58.

By Sheryl Silver