Finding The First Signs Of Ovarian Cancer

Ovarian cancer has long been called the “silent killer,” because it usually is not discovered until its advanced stages. Up to 75 percent of the time, the cancer has spread to other parts of the abdomen before it is detected. Early-stage ovarian cancer often does produce symptoms, however,  and the new battle cry of survivors is, “It Whispers — So Listen!”

According to a study published in the Journal of American Medicine (JAMA) on June 8, nearly all women diagnosed with ovarian cancer had bloating, increased abdominal size, urinary tract symptoms, and pelvic or abdominal pain during the year prior to their diagnosis.

But it was nearly a year before the article was published that Joan Storms learned she had ovarian cancer. In the months up to the diagnosis on July 3, 2003, the Sandy Hook resident had been leading a busy, stressful life as the owner of a home appraisal business.

“Everyone was refinancing,” she said. “Work was occupying most of my time.”

She had been experiencing some annoying, seemingly minor health issues, but she attributed them to being overworked. She had bouts of indigestion, and developed pain and pressure in the pelvic area, all of which she would later learn were among the many common symptoms of ovarian cancer.

“I hadn’t been feeling well for a couple of months,” she said. “Among other things I had back pain that had been diagnosed as arthritis in the spine. Finally, I developed a searing pain in the pelvic area that I thought was a bladder infection. I decided one day, this is it, I have to go to the gynecologist.”

Because it was a holiday, Ms Storms’ gynecologist was not available; she was directed to a gynecologist who was on call.

“I thought I’d go, get an antibiotic, and be sent on my way, but instead the doctor ordered an ultrasound,” Ms Storms, 55, said. “She saved my life,”

The ultrasound showed a tumor the size of a large grapefruit on one of Ms Storms’ ovaries.

During the holiday weekend that followed the discovery of the tumor, Joan Storms and her husband Gary searched the Internet to learn all that they could about her condition.

“We had a crash course on ovarian cancer,” she said.

Ovarian cancer is the sixth most common cancer in women. It ranks fifth as the cause of cancer death in women in the United States. The American Cancer Society estimates that there will be about 25,580 new cases of ovarian cancer in this country in 2004. About 16,000 women will die of the disease.

There are more than 30 different types of ovarian cancer, which are classified according to the type of cell from which they start. Malignant ovarian tumors can originate in the cells that cover or line the ovaries, in the cells that are destined to form eggs, in the cells that secrete hormones, and in the cells that connect the different structures of the ovaries.

Only about 25 percent of ovarian cancers are found an early stage, when the chances are greater that it can be treated successfully. For that reason, it was called the “silent killer” for years.

“I never knew what the symptoms are,” Joan Storms said. “I think if I had known, I could have figured it out earlier.”

Early cancers of the ovaries tend to cause symptoms that are somewhat vague and could be caused by other problems. The symptoms might include swelling of the stomach (abdomen) from a buildup of fluid; unusual vaginal bleeding; pelvic pressure; back or leg pain; and problems such as gas, bloating, long-term stomach pain, or indigestion.

By the time ovarian cancer is thought of as a possible cause of these symptoms, the cancer may already have spread beyond the ovaries.

“There is a blood test, the CA-125, that is 80 percent accurate, but not very accurate for the early stage of ovarian cancer,” Ms Storms said. “In my case, my test was well within the normal range.”

Ms Storms’ doctor recommended that she go to Yale-New Haven Hospital for surgery and follow-up treatment.

“It is really important that a woman with ovarian cancer go to a board-certified gynecologic oncologist,” Ms Storms said. “They do this type of surgery all the time and they do the appropriate staging. They test the lymph nodes and the tissue in the pelvic area. A lot of gynecologists do not do that when they do the surgery.”

It is important to know what stage the cancer is, Ms Storms said, so that the appropriate kind of treatment can be prescribed.

According to information recorded by the Ovarian Cancer National Alliance, five-year survival and disease-free intervals for women whose surgeon was a gynecologic oncologist far surpasses the rates for women treated by nononcologist, ob/gyn groups. (For more information, see the alliance website, www.ovariancancer.org.)

“I was diagnosed stage two — I’m very lucky,” Joan Storms said. “Seventy-five percent of the cases are diagnosed when they are stage three or four. If it can be diagnosed early, the prognosis is good.”

Ten days after surgery, she began to receive chemotherapy treatments. “I had six treatments, one every three weeks,” she said.

Within two weeks of having the first treatment, Ms Storms lost all of her hair.

“By three weeks, I had no hair left,” she said. “It was very hard. Intellectually I was prepared for the hair loss, but emotionally I was not prepared.”

A very private person, she was reticent to talk about her medical condition and treatment, but when she began to read about plans for Newtown’s first Relay For Life, she began to change her mind. “The Relay For Life really helped me,” she said. “I saw how many courageous people with cancer there are out there.

 “I decided I needed to help to get the word out. The important message is have annual gynecological checkups, know your body, and be aware of any changes, and know the symptoms of ovarian cancer.

“Be your own advocate,” she said. “If you have a problem and are not satisfied with your doctor’s explanation, see another doctor. So many women are misdiagnosed or don’t seek medical help early, and the ovarian cancer is not discovered until it is in the advanced stage.”

At the same time, however, Joan Storms said she does not want to sound overreactive.

“One of the problems with ovarian cancer is that it is not that common,” she said. “Even though women may have some of the symptoms, it is not likely that they have ovarian cancer. So they should not panic, but they also should not ignore the symptoms.”

According to the JAMA article, 94 percent of the women with ovarian cancer had symptoms during the prior year and 67 percent had recurring symptoms.

“Given that 80 to 90 percent of women who develop ovarian cancer will not have a worrisome family history, and screening in the general population is not yet effective, it is important for women and practitioners to understand the symptoms of ovarian cancer so that diagnoses can be made as promptly as possible,” the JAMA authors concluded.

To check for ovarian cancer, during a routine physical and pelvic exam, a physician feels the ovaries and uterus for size, shape, and consistency. Besides the CA-125 blood test, doctors may also do a transvaginal sonogram. Researchers are testing other blood screening tests, but these are not ready for regulatory approval.

A Life-Changing Illness

The Storms family has lived in Sandy Hook for 24 years, moving here a month after their youngest son, Daniel, was born. Daniel and his two older brothers, Chris, 28, and Michael, 26, now live and work in New York City. Gary Storms works for Praxair, Inc, in Danbury.

Since she was treated for ovarian cancer, life has changed for Joan Storms.

“In some ways it is better,” she admits. “My life has been enriched by the incredible amount of support I have from family and friends. But my priorities have changed. I do a little [real estate appraisal] work now, but I have someone working for me. I am doing new things. I bought a piano and am going to take lessons again, like I did as a child. It is nice to have music in the house.

“I’ve also started hiking and have a rather lofty goal to hike Mt Washington. Gary and I will do it someday soon,” she promised.

This article was reprinted, with corrections, from the Summer 2004 Health Monitor.