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Every second of treatment matters in cancer fight

March 9, 2008 12:16 am

Editor's note: This column originally was published Aug. 22, 2004. The writer passed away last month.

I'M SURE my gyne- cologist thought I was the typical hypochondriac when I walked into her office and proclaimed, "I have ovarian cancer."

After all, symptoms can be maddeningly vague. The bloating, gastric upsets and pelvic pain can mimic dozens of other problems, and doctors often look for more benign causes of the problems or may dismiss the complaints altogether.

That's why ovarian cancer has been called the silent killer. According to the American Cancer Society, approximately 25,000 women will be diagnosed and 16,000 will die from the disease this year [2004 statistics], making it the deadliest of all the gynecological cancers and the fifth-leading cause of death in women.

They say the symptoms whisper, so listen. I really, really wanted to be wrong about what I thought I might have. But I wasn't. I was diagnosed with ovarian cancer in June 2003, at age 45, more than six months after I first experienced symptoms.

I wish I had not become the family expert on this disease, but as Gilda Radner, who died of ovarian cancer, used to say, "It's always something!"

LISTENING TO HER BODY

Prior to June 2003, about all I knew about ovarian cancer was that Gilda had it, she experienced bloating and she died. Still, knowing those few facts probably saved my life.

Even so, I was diagnosed with advanced Stage 3 cancer. Cancer can be diagnosed at any one of four stages, depending on how much it has spread. Those with early stages of the disease have a 70 percent to 80 percent chance of surviving. Once the cancer is Stage 3 or 4, that statistic plunges to 20 percent to 30 percent survival.

Unfortunately, the long time it takes for the disease to be diagnosed means that the cancer is found at more advanced stages in about 70 percent of the women with the disease.

In my case, I had complained for more than six months, almost on a monthly basis, to my family doctor of various aches, pains and what was thought to be kidney stones and a bladder infection. In those months, I even had a pelvic/abdominal CT scan that identified my kidney stone but missed the tumors on my ovaries. I also had a CT scan of my chest to rule out a pulmonary embolus, and a round of the antibiotic Cipro for my nonexistent infection.

It wasn't as if I was ignoring what my body was desperately trying to tell me. I often think of how different life might have been if the radiologist or my doctor had diagnosed me six months earlier. But one day I looked in the mirror, thought of Gilda, and knew what was really wrong.

So I finally had an exam by a gynecologist, followed by ultrasound and blood tests. Great news--the ultrasound says it's just cysts, my gynecologist told me. So why was I still worried?

FEARS CONFIRMED

By this time, it had become apparent that I was indeed a full-blown hypochondriac with a strange wish to have cancer, because I knew it wasn't just cysts. By this time, my body was screaming at me, no longer content to whisper.

And then the results of a blood test called CA125--which measures proteins shed by ovarian tumors--came back, elevated slightly at 91 (35 and below is normal). Sometimes I hate being right.

My gynecologist properly referred me to a gyn-oncologist, a specialist in gynecological cancers. Research shows that a woman's chance of survival greatly increases if a competent gyn-oncologist performs her initial surgery.

Since there's no gyn-oncologist in Fredericksburg, I had to go either north or south to be treated. I chose to go south to Richmond, as I had once lived there for 10 years and knew of a well-respected specialist there. I called for an appointment on a Friday, saw him the following Tuesday and had major surgery on Wednesday of the next week.

Since my family was very optimistic, as families usually are, I decided that I would know my prognosis by looking at their faces when I was wheeled into my room after surgery. So, loopy from the drugs and a six-hour-plus surgery, I looked around the room and everyone was smiling. I must be OK, I thought.

But after I moved into the bed, I finally saw the face of Rick, my husband. I can't remember ever seeing him look so incredibly sad. I really, really hate being right all the time.

A NEW JOURNEY

So I began my journey into Cancerland. I had six months of chemotherapy, more major surgery and another three months of chemo. Then I was finally done. But what is done? As testicular cancer survivor and Tour de France winner Lance Armstrong explains it, "I don't have cancer anymore, but I don't not have it, either."

Trying not to worry about a recurrence occupies most of my time. I've gone back to work part time. I've also become very active in ovarian cancer advocacy and awareness. I participated in the Walk for the Whisper, sponsored by the National Ovarian Cancer Coalition, just a few weeks after my last chemo. Afterward, I was inspired to start a division of the group closer to home. It's called the Greater Richmond Area Division of the NOCC, and includes the Fredericksburg area.

People ask me if I'm in remission, but doctors are reluctant to use that word. What they say and write on my chart is "no evidence of disease," or "NED" for short. So that's where I am, I'm dancing in limbo with NED.