Thursday, September 22, 2005

 

Biopsy 2

The latest round of hurry-up-and-wait came last week with a call from Duke saying their pathologist did not concur with the Charlotte and Yale pathologists' CTCL diagnosis, stating that the biopsy was not conclusive. They wanted a second biopsy to run a specific test to positively confirm CTCL. I knew that the first biopsy was inconclusive, but reasoned that subsequent bloodwork, CT scans, and opinions of Charlotte and Yale oncologists would have sufficed. Silly me.

So yesterday (Wednesday, Sept 21), I drove to Duke to donate 2 more 4mm x 4mm plugs of skin. The test to be run is a T-cell specific test and will take about a week. A positive test result will indicate that I do have CTCL. A negative test result means nothing, i.e. it could be a false negative, and would throw us into that realm of uncertainty.

A significant part of me hopes that it is positive, so we can know the beast in front of me and deal with it. I do not have the expectation that I don't have lymphoma (the rash still persists, for instance), but am curious as to what the doctors may say if the test is negative. Do we proceed with the treatments given the relatively inconsequential side effects, assuming a false negative result? What else could it be? Etc., etc.?

So, we wait. Again.

This latest pathology report should be back the middle of next week. I have tentatively scheduled my first photopheresis visit for Monday, October 3, which will be canceled if the test is negative but is at least on the calendar.


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