Here's what got covered at the most recent appointment with the oncologist.
Basically, we're doing the biopsy to determine IF the spot the surgeon pointed out on the CT is indeed cancer. If it is cancer, then, is it the same cancer or a different one.
The oncologist indicates that any wide variety of things could cause the CA 19-9 to climb like it has been. He indicates that there is a 10% + or - margin of error on both a PET scan and a CT scan. He indicates a PET scan can show a false negative, but it CAN show cancer. He indicates that a CT can show a false positive for an image of something being on another something that may or may not be cancer, but a CT CANNOT be cancer positive.
With all of that in mind, the oncologist reiterated that the PET scan was negative for cancer as determined by the radiologist. He indicates that the radiologist is top notch in his field with a number of years analyzing PET/CT scans. He (the oncologist) is confident that the PET scan is negative (keeping in mind the 10% plus or minus).
The oncologist indicates that a number of things can cause a CT to throw an image off, or produce inaccurate images. One example he gave was the metal sutures that are still in my liver. He described that the sutures can cause a scatter effect of the radiation during the CT scan and might provide a false image in the area of the surgery, in this case the porta hepatis.
SO, after all of that, we go with the biopsy to determine for sure that this is indeed cancer, determine that it's not scar tissue, a spot of blood, a benign piece of junk just hanging out... that kind of stuff.
My best guess here is that the surgeon may not have even looked at my PET scan disk that I took and perhaps made an educated diagnosis based on my climbing CA 19-9 and the possible something near my liver and in my lower left lung from the most recent CT scan.
Now... about the lung stuff. In multiple CT scans throughout this "journey", these spots have appeared. In each case, they were interpreted as "calcified" things. The oncologist indicates that something can either be calcified, or they can be cancerous... however, something that is calcified cannot be cancerous. Ok... good for the lung issue.
Now, where do I go if I pull up a positive on the biopsy?
The oncologist indicates that cancer cannot be "cured" by chemo. That surgerical removal is the only way to have a chance to beat it. He indicates that chemo will kill cancer cells, but not cancer. To illustrate his point, he made a number of dots on our note paper with his pen, and also drew some odd shaped circles. Now, he demonstrated with "X" marks that the dots could be a cell, and that chemo would kill that cell, but not the circles. So the dots can be killed with chemo, the circles have to be removed.
Ok... whew this is long....
The next flavor of chemo, IF we decide to go that route, will be Cisplatin. A really nifty cocktail that causes life long side effects. Some of those are nerve damage, kidney damage, electrolyte disorders, nausea and anorexia.
As it stands now, until we get results from the biopsy, we are not going to do chemo. The oncologist's stand on that is he won't do something just to be doing something, especially noting the side effects of cisplatin.
Radiation is not an option. This is because the liver is not a strong as cancer and radiation would destroy the healthy liver before the cancer.
So, I was directed by the oncologist to begin looking for a surgeon who will do a re-resection. However, he indicates that it will be tough to find a surgeon who will do this because of the location. (another nifty picture detailing why).
I've set up an appointment with my surgeon again to get a consult on the re-resection. If he doesn't with to chance it, then the concologist does know one surgeon in Los Angeles who may be interested in giving it a go. As I understand it, this surgeon is a liver specialist like my surgeon at Stanfordr.
If we can't find any surgeon who is willing to risk this surgery, then we will begin looking into clinical trials.
So, there you have it!
the "real world"
6 years ago