Saturday, October 17, 2009

Information Unleashed

In general, I think I do a pretty good job of staying informed about the latest in breast cancer research as well as in my own personal cancer journey. There is information that I have about my own diagnosis such as my prognosis, the survivability rate, etc that I don't particularly like, but I have them.

When I was first diagnosed, I chose to take an Oncotype test that is pretty darn reliable at indicating recurrence rates in breast cancer patients. It is a simple test and in some cases it is used to determine if people are a good candidate for chemotherapy. In my case, my pathology report came back saying that my diagnosis was a Grade 3 out of 3 which is aggressive so my doctor agreed to the test, but indicated that she would be VERY surprised if it came back with a low score.

The test results take several weeks and come by mail. I got my big white envelope in the mail and found that I couldn't open it. Though I knew that my cancer was aggressive and that there was no chance I was going to avoid chemotherapy, I found that I couldn't deal with an actual number saying I had x% chance of recurrence. I know roughly what my chances are of a recurrence, but didn't want to carry a number around in my head.

I gave the envelope to my oncologist, told her I didn't want to know what was in it, but wanted to know if we were on the right path as far as chemo, radiation etc. She said we were definitely on the right path and that the oncotype score did not change our treatment plan at all.

Yesterday I went in for a regular check up with my oncologist and asked her about having my ovaries removed. There are several reasons for this, mostly to keep the estrogen level in my body down, but also to decrease my chances of developing ovarian cancer. We talked about the pros and cons of having it done and I asked her if I should be doing it earlier than later. She answered that there was no need for me to do it right now, although with such a high oncotype score I should plan to do it at some point. Wait. Stop. "High Oncotype score?" I literally felt my head pop out of the sand.

She did not tell me my actual number so I still don't have to carry a number around in my head, but I do now have to carry that "High Oncotype score" in my head and try to figure out what to do with it. I like to tell myself that I am doing everything I can to keep my recurrence rate down, but that isn't entirely true. I am still not getting enough exercise and I am still carrying around some extra weight. These are two of the easiest things a woman can do to reduce her risk and I am still at an increased risk. I also now have to wonder if my treatment was aggressive enough. I had 4 rounds of chemo-the minimum amount that anyone has. While I certainly didn't want to do more, I thought it was enough. Now I don't know if I have done everything I could.

Information is powerful. Sometimes too powerful.

1 comment:

Annie Searle said...

Now that little phrase is echoing in your head, it may be time to look at what the report said. Like you say, "information IS power." It may be that she spoke carelessly. Maybe what she meant was "with that kind of an oncology score..." As a program manager, you know that data is just that: data. And data can be managed, as you have done so effectively in your treatment already. I am always here, if you want to talk.