My Years of Not-So-Magical Thinking

donna-trussell

Donna Trussell

Contributor
Posted:
06/2/09
Research has confirmed what I long suspected: Early diagnosis of cancer recurrence provides no survival advantage. Doubts on Ovarian Cancer Relapse Test.


In the years after my diagnosis of ovarian cancer – on the morning of Sept. 12, 2001 – simple observation suggested that if I recurred, my next move wouldn't much matter. Further treatment might give me a few extra months. Or not. You can close the barn door now or you can close it tomorrow. No rush. The horses are still gone.

The new study shows that relapsed patients who start chemo sooner rather than later do not live longer.

Many ovarian cancer survivors live and breath the CA-125 test, which requires a blood sample, but I'm not one of them. For years I've had fantasies of skipping my annual gynecologic oncologist checkup entirely. I'd be like a woman from the 19th century who one day "took sick and died."

The first year of cancer survival – aka the year of magical thinking (hat tip to Joan Didion) – for most women goes something like this:

I'm going to stay positive and beat this thing!
I'm going to do everything my doctor says!
I'm going to do yoga and Pilates!
I'm going to eat romaine lettuce all day!
I'm going to ramp up my good karma!

My surgery for stage III ovarian cancer was followed by six months of chemotherapy. During that time I didn't read much about cancer. My abysmal survival statistics were all the information I could handle.

But then I completed treatment and was declared in remission. My chance of relapse?

"Fifty percent," my oncologist said. Yikes.

"What can I do to prevent a recurrence?" I asked.

"Nothing," she said.

It was in that little hope vacuum that I got on the Internet and looked for something that might give me an edge.

I found an edge, all right – as in two-edged sword. The more you know, the more you know. Turns out my cell type was a "bad actor." Out of dozens of ovarian cancer subtypes, mine was the most aggressive and most resistant to chemotherapy. Oh joy.

My oncologist didn't buy it. "I've seen cancer cells from two different patients that looked identical under the microscope. But in the two patients, the cancer behaved in opposite ways," she said.

At the time I thought she was trying to cheer me up, but now I believe her. These days I tell newly diagnosed patients: If I've learned anything about this disease, it's that cancer is unpredictable.

Even if my cancer does return, it won't kill me unless it takes over a vital organ. Cancer is not a virus or bacteria. It's part of my body. In fact, some of the most promising research involves "helping" our immune systems recognize cancer cells for what they are.

Cancer is an old disease. Cells have been found in dinosaur bones and Egyptian mummies. It only seems like an epidemic now because people are living longer. Our ancestors often got wiped out by war, childbirth, starvation or infectious disease before cancer had a chance to wreak havoc.

Every time a cell divides, that's another opportunity for cancer to develop. If you fight off cougars, snakes and serial killers and manage to arrive at age 40 or 50 intact, that adds up to a whole lot of cell division.

So go ahead and boost your karma. Exercise. Eat salads. Knock yourself out. Can't hurt.

But also remember the words of my grandmother. She was 94 years old and the doctor told her she'd had a good run. Time to let go, he said. She replied, "It's true that I'm 94. Nothing I can do about that. But I want to be 95!"

My grandmother got herself a new doctor and asked him how long she had to live. He replied, "I expect to get up tomorrow morning and go about my business, and I expect you to do the same."

That she did, for another six years. And here I stand today, "bad actor" cell type and all.

Extreme vigilance by two doctors got me into the operating room in time to save my life, but not every woman is so lucky. Although half our population is vulnerable to ovarian cancer, we still do not have a good screening test for the general population.

Better to catch this disease early than deal with recurrence. There are exceptions, I'm happy to say, but recurrence of ovarian cancer is usually a grim affair.

Reading The New York Times story on the study was not easy for me. In the comment section I recognized names of friends from my days of attending survivor conferences and posting on a discussion list. I'll never again be the woman I was before 2001, but my long remission has allowed me to move on with my life.

Some survivors have been on and off chemo for years. Other women have not recurred, but they've remained on the scene as advocates. And of course there were the friends whose only comment was their absence. That was most painful of all.