Wrapping my head around the “prognosis”

Roni writing.

So, what I was hoping would happen with this second consult with a specialist is that this doc would have a better idea of what is going on now with this disease, what the expected rate of progression is (or is not), and that he would be able to tell us how to “fix” it. But we came away from the consult with more questions than answers.

I’m grateful that this doctor admits when he doesn’t know. I’m frustrated by how much the doctor doesn’t know. Not his fault. The way that the disease has recurred in Kevin is “confounding” – doc’s word. And, his opinion matches that of the first specialist we consulted with.

Dr. Loggie explained that what he sees on the CT/Pet scans is not consistent with the tumor markers, which are not consistent with the original diagnosis and the way that cancer typically recurs. Dr. Loggie told us that if he were going solely by the scans, which show little changes over the period of a year, he would assume Kevin has the least aggressive form of the disease. However, the change in tumor markers suggests that there is maybe something a little more aggressive going on. But, what he would expect from Kevin’s history is that the disease would have recurred with the most aggressive form (signet ring cells) that was present five years ago. But, he knows that hasn’t happened because as he said to Kevin, “You’re not dead.” A little blunt, but effective in getting the point across.

BTW, I believe that the reason the signet ring has not recurred is because G-d healed that five years ago. When viewed through a purely scientific lens -- confounding. But healing from G-d in answer to prayer is an explanation that makes sense to me.

But back to "prognosis": Both specialists also agree that another curative surgery like the MOAS Kevin had in 2004 (complete cytoreduction with heated chemo wash) has been ruled out as too risky and not likely to be successful due to too much scar tissue, problimatice placement of tumors, etc. And while chemo can slow progression, it has not ben known to cure this type of cancer.

So, here’s how I’ve been best able to wrap my head around it. It’s kinda like you’ve learned that there is a bomb strapped to your body that there’s no way to remove. The bomb has a timer, but no one knows when it’s been set to go off. Not only that, there’s some evidence that the bomb maker was completely incompetent and the bomb may never go off, but no way to know for sure. If you try to disarm the bomb by cutting the blue wire (complete cytoreductive surgery), there’s a good chance that the attempt would prove fatal but a very poor chance that you would disarm the bomb. You could keep it from going off for a while (chemo), but you have to trade quality of life indefinitely to do so.

If you are confused after reading that, then welcome to the club.

So in light of all the “confounding” information, I love how the doctor is approaching Kev’s case. He is not trying to fit Kevin's atypical case into a typical protocol. He wants to study it more and spend some time thinking outside of the box and exploring every option. He’s going to look at two additional tumor markers, besides the two that we’ve been tracking, and wants to see what happens with the tumor markers during a two month “vacation” from chemo. We’ll meet with him again in two months, at which time will see if the doc has a better idea of what is going and together explore a hopefully wider range of options.

In the meantime, we continue to pray for more healing as well as wisdom for ourselves and the doctors. We still plan to meet with a medical oncologist to see if perhaps a more maintenance, less life-disrupting, chemo regimen is one option.

We appreciate all of you who join us in prayer and support us with your words of love and encouragement.