Good news, preceded by much pointless anxiety

Deb had her regular 3-month CAT scan Monday (February 16), and it came up clean.

I put that message right in the first line so as not to leave you in the maddening suspense we experienced this week.

Let me explain: Deb's primary care physician belongs to a group that allows patients to log into a web site and see their test results. It's a bit experimental, and medical people are divided about how wise it is: Do you really want people finding out they have some deadly disease by reading it on the web rather than having a doctor tell them? On the other hand, power to the patients.

We like the system. A few weeks ago we came home from a trip to find a phone message asking Deb to come in to have her annual mammogram redone – precisely the kind of thing that can make you nuts, because doctors never leave a message saying that they've found something awful. Plus, we got home after office hours, so there was nobody to answer questions until the next day. Deb went to the computer, logged into the web site, and looked at the radiologist's report herself. It was clearly one of those probably-nothing-but-check-anyway situations, so she slept well, went in the next day, and it turned out to be nothing.

We felt stupid for not having used the system after Deb's November CAT scan. The scan had been performed on a Monday, and her appointment with Dr. Lange (the oncologist) wasn't until Friday. She had decided not to look at the results online, and we both slowly went crazy until she broke down and looked Thursday night. The scan was clean, and the results had been up since Tuesday; we could have saved ourselves two-and-a-half days of anxiety.

This week we had the same Monday/Friday gap, and so we decided to look at the results as soon as we could. We checked Tuesday night and the results weren't up yet. We made excuses: Monday was Presidents' Day, and it was school vacation week in Massachusetts – probably everybody in Radiology was out of town. But in the back of our minds was the idea that the system had some safeguard against posting Really Bad News.

Wednesday night – nothing. Thursday night – nothing. By Friday morning, we were both convinced that the scan had shown some new tumor – probably in the liver, where the residue of the GIST tumor had been burned off rather than surgically removed. Liver tumors are pretty much a death sentence; when Deb's mother's breast cancer had gone to the liver, we did our research and figured (correctly) that she didn't have long to live.

There was a certain logic to a new tumor showing up about now. It's been almost a year since Deb started taking Gleevec. In the (so-far incomplete) studies that have been done on Gleevec, the average time until tumors stop shrinking and start growing is 84 weeks. That's more than a year and a half, but it's hard to know how to compare the sample population to Deb. Most of them had large inoperable tumors. (That's why they started taking Gleevec in its experimental phase). In one way of looking at the situation, that speaks well for Deb, who presumably came out of surgery with only trace colonies of GIST cells. But if you understand how the Gleevec failure process works, it's obvious that those large shrinking tumors must have masked small growing tumors for some period of time before it became apparent that the Gleevec was failing. So maybe Gleevec started failing for most of those folks around the one-year mark.

Friday, just before lunch, Dr. Lange smiled at us and (with great effort, I think) didn't laugh. The report was in and everything looked fine. The folks in Radiology, he assured us, have no idea that we're reading their reports. There's no safeguard in the system that keeps us from accessing Really Bad News. The delay was simple bureaucratic inefficiency. “You can't read anything into what the Soviets aren't saying,” he commented. Lange was very encouraged by how well Deb is doing, and recommended doing the next CAT scan at a four-month interval. (Mid-June, for those of you keeping track.)

Since we didn't have to go into a series of emergency follow-up appointments and start scoping out another brush with death, our plans for the day were blown. So we drove up to Portsmouth, did some shopping, and in the evening went to a performance of a slapstick juggling trio called “The Flaming Idiots”. We laughed very hard at them.