Elizabeth Edwards has metastatic breast cancer

Elizabeth Edwards, wife of Democratic presidential candidate John Edwards, has metastatic breast cancer. The couple announced the news today in a press conference. (1, 2)

If you are prone to believing all you read in the newspapers or see on TV, you might think this was just a blip on the radar for the Edwards’.

    “Oh, honey, by the way … I got diagnosed with metastatic disease today,” Elizabeth said as she poured orange juice into her children’s cups.

    From behind his paper and sipping his morning coffee, John poked his head out and said, “Oh, that’s too bad. Did you remember to set the TiVo to record Scrubs for me tonight? That J.D. cracks me up.”

Elizabeth was diagnosed in 2004 shortly after the end of her husband’s presidential campaign and underwent surgery, chemotherapy and radiation. She was originally diagnosed as Stage III invasive ductal carcinoma.

Her original treatment was believed to have “gotten it.” Of course, that’s the problem with that tricky little bastard breast cancer. It has a tendency to pop back up just when you think you are done with it.

Now, with the appearance of a tumor in a rib, she is official considered Stage IV, or metastatic.

This recurrence has happened within three years of the original diagnosis. That’s the most dangerous time for a recurrence. The threat peaks around three years, then diminishes. There is a myth that at five years if you don’t have a recurrence you are “cancer free.” That’s not true. Really, it means you have been fortunate enough to reach a point where your recurrence risk has dropped down to a small percentage each year.

While I admire the Edwards’ attitude about not allowing this new diagnosis to affect them — at least publicly that’s what they are saying — I don’t think it’s to the benefit of the general public to portray Stage IV breast cancer in the way the media are reporting this story. Elizabeth, John and doctor treating her are all quoted as saying they are optimistic; optimism is not a replacement for a cure.

In a story on CNN, I think people are being completely misled by a statistic about survival. “Reliable survival rates for breast cancer that has spread aren’t available. Five years after a first diagnosis of breast cancer, 88 percent of women are still alive.”

There are a few things wrong with cancer statistics in general — the basic problem being that by the time the statistics are available, you are reporting on a population who started receiving treatment at least 10 years prior, so the statistics are outdated as soon as they are available. This statistic, in addition, is particularly misleading because those 88 percent of women are not merely women with Stage IV disease — the vast majority of the 88 percent would be women diagnosed with an earlier stage disease. In addition, the 12 percent that have died, if they died from breast cancer, had Stage IV disease eventually, if not as an initial diagnosis. You don’t die from Stage II disease. You may start with Stage II disease, but it becomes Stage IV disease and then you die.

I hope I’m not coming across as saying, “Elizabeth Edwards needs to wake up and smell the coffee. She’s a dead woman.” That’s actually not true.

I explain metastatic disease like this: if you have mets, you will probably not live the entire lifespan you would have lived without mets. However, that doesn’t mean you won’t live a long and productive life. It is extremely likely, though, that you will someday die from mets … if you don’t get hit by a bus first.

The point being that it’s a sucky diagnosis, but you can live with it. And, frankly, besides having to manage the medical aspects of it, you really shouldn’t let it invade your life. It’s something to “manage.” Unlike other people, you know what you will probably die from. However, you don’t know how soon.

In fact, the medicine of breast cancer is changing so quickly that women diagnosed today with Stage IV disease have a longer life expectancy than those diagnosed last year. My own oncologist is a leading researcher in this area. At the conference I attended three weeks ago, he gave examples of women he had treated for 17 and 20 years each who received little or no chemotherapy in that time. They were treated with what are called “hormonals,” but are really anti-hormonal drugs, and have less of the life-restricting side effects that chemo has. These were women diagnosed with Stage IV disease. When they were diagnosed, two decades ago, it would have been unheard of to live for 20 years after that diagnosis.

Elizabeth’s doctor was referenced as saying “the prognosis was good.” I want to pull a Bill Clinton and ask, “What is your definition of good?”

I think Elizabeth has every right to be optimistic. The medicine is changing. The medicine that I’m aware of available right now has the potential to give her a good quality of life for a decade or longer. I just hate to hear breast cancer being portrayed in the media as “damn near cured.” Sure, I’m paraphrasing, but that’s the way some of the stories have come across. It is far from it and a Stage IV diagnosis is not good.

It’s “good” that so far she has been diagnosed with mets to her bones. The treatments seem to “contain” that type of mets better. However, her doctor has mentioned there are small spots evident on her lungs that are suspicious, but it is too soon to say what they are. Soft tissue invasion is harder to treat for reasons I don’t understand yet – although, I have a pal who just last week was deemed NED (no evidence of disease) after a liver resection, where she was sliced open and a portion of her liver was removed.

So, there is hope.

But let’s not stop walking those little feet off and writing checks to places like the IU Breast Care & Research Center. We’ve come far, but we are by no means done.

Author: rosie

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1 Comment

  1. Hey Rosie, I was struck by the nonchalant way the media and the Roberts were portraying this diagnosis (at least in public). I think it does a dis-service to bc survivors when the disease is portrayed in this way. BC kills, and unfortunately, Elizabeth will more than likely die of this disease. More people need to know that bc is a killer. BC does not need to be portrayed as a chronically treatable condition. Yes, it’s chronic – till it kills you.

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