My Mother’s Symptoms: What We Knew – And Now Know – About Ovarian Cancer

June 21, 2007 by Agnes Krup

In August of 1984, my parents came from Hamburg to visit me for a long weekend. I was a graduate student at the University of Tübingen, a prestigious institution stemming from the 15th century, tucked into a beautiful, remote corner of southwest Germany. It was a sweltering summer weekend, and we filled it to the brim with fun things to do: idle walks through the cobblestoned streets, a lovely summer hike over a hilltop to the nearby village of Bebenhausen, an outdoor concert in the cloister of a Cistercian monastery.

We roamed the medieval castle overlooking the town and walked along the river -– the Neckar, which, some 100 miles later, happens to flow through the much more famous but by no means more picturesque town of Heidelberg. We savored the local maultaschen, deliciously oversized ravioli filled with spinach and minced meat, in a small restaurant overlooking the green market in front of the gilded town hall.

On one of our outings, my mother let my father walk ahead a bit and casually said to me: "Funny. I guess it has to do with getting older. That I can’t close my skirts around the waist anymore, even though I haven’t really been gaining any weight."

I was 22, and I laughed it off with her. I saw my parents back to their bed and breakfast that night, returning to the room that I rented in the home of a sprightly septuagenarian who let rooms to students after her own five children had all grown up. I loved having my parents in town, showing them around. I had no idea that this was the first and last time we would do something like this together.

The call came a few weeks later, from my father. I had no private line, so I took it in my landlady’s living room. I stood by her rather battered desk, trying to comprehend what my father was saying. Her grandchildren’s photographs and drawings cluttered every surface. There was a beautiful glass paperweight on the desk, enshrining a blue butterfly.

"OK," I said, when my father talked of my mother’s surgery that same morning. That she was fine and that she had not wanted me to know in advance so that I wouldn’t worry. That everything would be all right.

We hung up. Of course everything would be all right; it always had been. I just stood there, dangling in my hand what was an old-fashioned receiver even by the technical standards of the 80s, looking out over the late summer garden. My landlady came up from behind; she had been finishing her afternoon tea at the other end of the large room. She was tiny and brittle as a sparrow, but strong from her bi-weekly gymnastics class, and she gave me the hardest hug I remember ever having received.

"Sie armes Stückchen –- you pour little thing," she said. It was then I realized that things might not be all right.

My mother died of ovarian cancer a mere nine months later, on Easter Sunday of 1985. Her medical history, from the first diagnosis on, had been pretty much predictable. Her initial emergency surgery was followed by scores of tests and aggressive chemotherapy.

There were the short, blissful months of rebounding energy and optimism, then a second, aborted attempt at surgery. She died a few weeks after her 49th birthday.

The first kind of chemo her doctor tried had a one-in-50,000 chance of damaging the patient’s hearing. After receiving the treatment for the first time, my mother complained of screechy, tinny sounds when playing the upper range of the piano; even when listening to music. Consequently, she and I spent the better part of a day in the waiting room of the otolaryngological clinic, of all places.

She was a music teacher and pianist by training, with a beautiful voice. As a child I had been mesmerized by her rendition of romantic songs, Brahms especially. I would sit under our baby grand, quiet as a mouse, while she would sing, just for herself and me.

"You know," my mother said to me after a test confirmed the damage to her hearing, "if this is the price I have to pay to live, I am not sure I want to pay it. There are limits."

When he got the results, her gynecologist was furious. "Why you?" he cried, almost shaking his fist at nobody in particular. "Why of all people should this be happening to you?"

He didn’t want her to be the one in 50,000. She was a beautiful, warm woman and he wanted her to live. He put her on a different drug cocktail, one for which she had to come into the hospital once a week instead of every three weeks. One that would make her hair fall out even more quickly. One that would give her far less time to recoup, regain strength and eat substantial food between the spells of vomiting.

Her gynecologist was probably also angry with himself. He was an up-and-coming professor at Hamburg University’s prestigious teaching hospital, tall, outgoing and rather young for someone in his position. The last time he had seen her before her cancer diagnosis, almost a year earlier, he told her that she had what he thought were most likely fibroid cysts on her uterus and suggested they be removed.

But my mother was chicken. She had always been terrified of surgical procedures. And a couple of years earlier, she had almost agreed to breast surgery for what turned out to be completely benign growth. ("See? I knew nothing was wrong.") The problem was that she remained chicken too long, that she was afraid of finding out something was wrong. The problem was that she did not reach out earlier, worrying more loudly and more publicly about her expanding waist line — which had always been tiny — talking about it to girlfriends or her sister who might have urged her to find out what was going on.

The problem may also have been her rather old-fashioned upbringing that kept her from talking frankly to the men who mattered — my father, even her own doctor. Instead, she turned to me, unprepared and young as I was, more or less asking for reassurance that nothing could be wrong. And by the same token she may have been relieved that her very qualified but perhaps not terribly experienced doctor had not put his foot down and insisted on a surgical procedure all those months earlier instead of merely suggesting it.

In the two decades that have passed, diagnostic tools as well as treatment have come a long way. Still, I am not sure whether to laugh or cry at last week’s breaking medical news — the identification of a set of symptoms that might point to ovarian cancer. Bloating? I have known about that one for more than 20 years.

I don’t think it is the list of symptoms itself that constitutes the news. Rather, it is an awareness of what these symptoms can mean and how seriously they should be taken. The American Cancer Society, the Gynecologic Cancer Foundation and the Society of Gynecologic Oncologists are to be commended for stressing this.

There is no excuse for us anymore to ignore these symptoms and to pretend that nothing is wrong – we need to make sure we find out, the sooner the better. And there is absolutely no excuse for those doctors anymore who suggest that it’s all in our (menopausal) heads.

Agnes Krup is a literary agent in New York. Read her previous essays here.