Sunday, June 14, 2009

On the One Yard Line

There's always that mix of feelings that creep over me when I go to Johns Hopkins to have a follow up PET/CT scan and a consultation with Dr. Georgiades: anticipation, nervousness, excitement, and the need to take deep breaths. On June 2nd, I received some great news:

Not only have all the ablated tumors shrunk in size, but they are also "dimmer" on the PET/CT, which means that the cancer has been killed and the inflammation caused by the radiofrequency ablations (RFAs) is disappearing. In fact, some of the tumors aren't even "lighting up" on the test at all! One such tumor is the one that was ablated during the last RFA that I had on March 3rd. Because of a small pneumothorax - collapse of the lung - during the procedure, Dr. Georgiades wasn't sure that he got the whole thing, which was one of the main reasons for this follow up appointment. Oh, and there's more: The test also showed that no new tumors have appeared, and the tiny little spots that were too small to characterize haven't grown. To me, this was the best news of all. Because no one knows how my disease spreads, we can't tell if, during these last two years of growth, all the cancer has revealed itself, or if there's more. We still don't know that, but worse case scenario, it looks as though we've stopped the growth. Best case scenario is that maybe, possibly, hopefully, we've killed it all. I'm happy and extremely grateful either way.

The plan is for me to have another PET/CT in September, when we can see if more tumors become even dimmer or stop lighting up due to the healing process. After I left Johns Hopkins that day, I felt that I not only made a touchdown, but that I had won the whole damn game! That's the way it is with cancer, every good report feels like a Super Bowl win. But the reality of metastasis is that we're never really out of the game. The season never ends.

After I got home, I started thinking about this, and I wrote this question to Dr. Georgiades:
I know that the terms, "cancer free," "cured," and "remission" will never be appropriate for someone like me. But do you think that someday I might be able to say that I'm "tumor free?"
Here is what he wrote back:
The problem is that even our best tests are not 100% accurate. We are following your disease with PET/CT, which is indeed the best test in this case, but its accuracy is about 92-95%. If and when one day the PET/CT is entirely negative (and given the way things are going now, there is a good chance it may happen) what we can say is: Based on our best test there is no evidence of viable tumor. Irrespective of that, however, we will need to follow up for life because of the possibility of a new lesion showing up.
That's Dr. Georgiades' diplomatic way of saying, "We really can't ever say 'tumor free' either, but things are looking good." That's ok, "no evidence of viable tumor" is good enough for me.



1 comment:

  1. Kathy - just checked my email and read the terrific news! Although I am sure you are not looking forward to follow-ups in the future, it looks like they will a cause for celebration, and as the good doctor says, the words entirely negative will be a part of your vocabulary!


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