Stop the Presses!

Everything seemed to be moving along nicely in November as I mentally and physically prepared to begin the biochemo treatment on November 26, 2007. Then the doctor called me on the afternoon of Wednesday, November 21, 2007, to tell me that…he could not find the cancer in my neck!?! And that he was recommending that I postpone moving into the biochemo treatment program!

OK, let’s take a step back. First, the good news; the biopsy of various spots on the top of my head on November 14, 2007 came back negative/clean. More importantly, the biopsy on the left side of my neck, performed on November 20, 2007, also came back negative.

So, does that mean that I do not have additional cancer? Not exactly.

The PET/CT from October 2007 identified some areas of concern, which the doctors interpreted to be cancer. An MRI of the neck also shows these areas of concern clearly in the left side of the neck, but not the right. However, as I mentioned above, the neck biopsy, which is the conclusive test to confirm that the ‘areas of concern’ are actually cancer came back negative.

So, do I have cancer in my neck again or don’t I? We do not know. How do you like that for an answer?

The doctor stated that there is a 10%-20% chance that the surgeon, despite his best efforts and the use of a CT to guide him, missed the spot(s) where the cancer resides. I reviewed the CT myself, and it sure looked like his needle was in the right place, but there is no way to be sure. The surgeon made three separate, but all equally fun for the patient, jabs into the area to ensure that he was testing as many areas as possible.

If not cancer, what would it be? Per the doctors, if it is not cancer, and no one is saying for sure that it is not, then it would most likely be an inflammation, probably caused by radiation that was performed on my neck in August and September.

So, where does that leave us?

We are in a bit of a holding pattern. Dr. Minor is recommending that I re-start the Interferon self injections asap, as this may be working. If the areas of concern in the neck truly are not cancer, then the Interferon could be doing its job and I should continue on with this program, which I stopped at the end of September. I have about 7 months remaining.

I did ask the doctor to clarify why we just wouldn’t move to biochemo anyway. I am as young as I am going to get, my life is already on hold, and I would like to be as aggressive as possible as soon as possible to try to beat this thing. He used the old ‘we only have so many arrows in the quiver’ analogy to explain that he did not want to give up on a potentially successful treatment option and move on to the next until we were sure that it was not working. While there are lots of trials in various stages for potential melanoma cures, there is not a whole lot out there beyond my current treatment and the biochemo program that is beyond trial stage and has demonstrated success.

The doctor wants to have another PET/CT scan in the middle of January, about 3 months after the scan in October. I wondered aloud to the good doctor what a new scan would tell us, whether it was now or in mid January. He explained that a new scan would allow us to see whether the areas of concern changed. If these hot spots had disappeared, then we would feel more confident that the original cause was inflammation, not cancer. If they still exist, but no new spots have appeared, we can measure their size to see if they have changed. No change could support a belief in inflammation, whereas a growth in size, or an increase in the number of spots, would suggest it is cancer.

What are the alternatives?

I could have a more involved surgery now called an open biopsy, where they open up the left and right sides of my neck and dig around to see if they can find anything. The downside with this option is that it is a bit of a fishing expedition, and we may find nothing. The surgery will require recovery time, which will prevent me from starting any additional preventative program.

So, what does it all mean?

It COULD be good news, but we won’t know until late in January. I hope that you are enjoying the roller coaster ride as much as I am!

I will say that the news took a little getting used to. It seems that we went right up to the precipice, were preparing to jump, and were pulled back at the last minute. We have planned our lives around this big change for the next six months, which now is not going to happen. Partly, I just didn’t believe it.

In any event, I am cautiously optimistic, but, to follow an old idiom (http://en.wikipedia.org/wiki/Idiom)