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The curse of information, June 2005

Sometimes it's good to be in the dark—to not know all the facts and to just happily take things as they come. I was somewhat in the dark when I had my lumpectomy. A doctor told me I needed surgery and I had it. I did a bit of research but I mostly placed my trust in the surgeon and didn't really question the side effects of surgery, the possibility of death that comes with any major operation, the long-term implications like lymphedema. I just had the surgery. But that was seven months ago. Since then, I have been bombarded with options and decisions and have become a professional information seeker. I want to know the good and the bad, the statistics, and the personal stories of others in similar situations. This helps. But it also scares me.

When my oncologist suggested I consider taking Herceptin as a preventative treatment, he told me there are possible long-term effects on the heart. He said there are not many short-term side effects, other than possible fever and chills at the time of infusion. But like all medications, there are all sorts of possible side effects, many of them rare. My oncologist did not name them all—perhaps they are statistically insignificant. Maybe I should have taken the information he gave me and made my decision—which would be to proceed with a therapy that can give me a 50% better chance of survival. But like I always do, I looked for more information on Herceptin. And I found all the possible side effects.

There are many possible side effects, most of them not likely for me, but what worries me is the fact that 15 women have died from Herceptin. Out of 25,000 women in one study, 62 had an allergic reaction. And 15 of these 62 died. I'm sure just as many people have died from the chemo drugs that have already been pumped into my body. And I'm still alive. People have died while having surgery. I've had several surgeries in my life. I survived them all. Women have died in childbirth. I've had two big babies and could have had major complications—but I didn't. I survived and so did my babies. So I know the likelihood of my having serious problems with Herceptin in probably low. But it's on my mind.

The same oncologist who suggests Herceptin once told me to stop reading. He said that we usually seek information when we are confused or worried. And in these states, we focus on the negative angle of the information. Which is what I do. I bury the fact that thousands of lives will be saved by Herceptin and I obsess about the fact that a few have died from it.

So I am still wondering about this drug. My gut tells me to do it—and I probably will—but first, I must find my way out of this maze of information.

Information is a gift. And it's a curse too.

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  • arthritismom

    I agree it's hard to not think about other people dying. Once you know that, it's hard to forget. The medications I take have side effects although I have been fairly lucky. ...

Jacki

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