Art, Not Science

We went for the usual Day 8 doctor visit Wednesday. The labs were all fine. The impressions we came away with were not. We discussed with Dr. Sunkin various next steps.

The first is a PET scan, if the insurance co. will approve it, or a CT scan next week to see what is happening with the tumors. Are they shrinking? Do they still show metabolic activity (only a PET shows that) or are they dead tissue now? Tony & I were quite shocked to infer that Sunkin is also looking at the scan to see if there are any new tumors. Somehow, we assumed that at least while I am getting chemo, no new tumors would appear.

We were also quite disappointed to learn the CEA tumor marker test that had dropped so dramatically during the first two chemos is really not very reliable. Sunkin compared it to the PSA test for prostate cancer. When Tony had prostate cancer several years ago, his PSA was not used to diagnose it. It always stayed low. Sunkin said some cancer patients have a CEA in the thousands, so my little 7.4 suddenly seems pretty meaningless. I am sure it is still a good sign that it has dropped during the chemo, but it seems it is not the strong predictor we thought it was.

He pointed to the fact that I don't have back pain as a good sign, but I reminded him that the pain stopped before chemo even started. No one has ever been able to explain why I had so much pain in Sept. and have virtually none now. It is still a mystery.

In discussing what the scan might show, Sunkin also never used the ‘r’ word – remission. He came close, describing shrinking tumors. But he never actually said remission.

We also briefly discussed Alimta as a maintenance drug after the chemo. When I expressed my disappointment that a study shows it extends life 4.3 months, that I was looking for years, not months, he didn’t really respond.

And how many more chemo treatments is still somewhat up in the air till the scan next week. Sunkin is talking about just one more – which makes it four treatments total. When I asked why we wouldn’t keep going till the CEA was zero and the tumors totally shrunk, he said there is a declining benefit in the chemo, that it starts to have too many side effects. Tony asked if we could return to the chemo at a later date if needed, and Sunkin said we could.

So we came away determined to go find a second opinion – after the scan and the fourth chemo. We are now in the midst of researching thoracic oncologists & programs – at Sloan Kettering and other major cancer centers in the Northeast. Sunkin said he was quite willing to send the chart & scans off for another set of eyes, but when I asked for guidance in choosing a doctor, he put us off till after the scan next week. Then, after a lengthy discussion about how we would come in to get the all-important scan results and discuss what next, he realized he will be away for a week at a conference. So his P.A. or nurse will call with the results, and we’ll move ahead on our own finding someone to see. We will see Sunkin just ahead of Chemo #4, so we can discuss his take on what’s next.