Frustrating day at the doc’s office…
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Leo,
I have found that my ONC is always the most pesimistic person on my care team. I think that goes with the territory. It wasn’t until this last month when I really pressed him after my CA 19-9 didn’t drop that he finally told me that he thinks “I’m really doing very well!”
From what I understand, the seeding can occur anywhere and it doesn’t mean that because the primary is in the bile duct and the mets are on the omentum that everything inbetween has cancer cells. It was explained to me that when a cancer cell breaks loose from the primary spot or enters the bloodstream it travels where it wants to until it gets stuck somewhere. The omentum is a common spot for it to get stuck because there are many capilaries/blood vessels there that are very small. It is one of the most common met spots for CCA (lungs and spots on liver are common as well)This is what Dr. Gores told me after my mets were discovered.
I’ve asked about having my omentum taken out also and got the same response from my Onc. He hasn’t ruled it out and he says that he knows an aggressive surgeon that would probably look at doing it, but that he thought it was in my best interest to wait since I am responding so well to the chemo. And – I still have a primary tumor in the bile duct. It’s still does not show as a mass, but does show with the typical PSC style stricturing so we really don’t know what it is doing. There hasn’t been much change over the last 3-4 years so we believe that the primary tumor is still small and hidden with the PSC.
I can certainly understand your frustration. Since your primary is likely destroyed I would be pushing like crazy to have surgey to remove the mets on the omentum too. But I also see the wisdom in allowing chemo to work for a few months, checking the CA 19-9 and scans frequently, and re-evaluating. It would be nice to rule out that spot on the duedenum as well. If you can zap or reduce what is already there by taking the chemo it would make the surgery more likely to be successful.
If you continue to disagree with your Onc and he won’t recommend removal of the omentum, I would strongly recommend going to Mayo and seeing Dr. Gores. He is always thinking outside of the box and I think he would see your situation as different from most others with mets.
Have to run for now, but still praying for you. Have a good Alaska trip!
Rick
Leo…..I am so happy to hear that the cruise became a reality. Enjoy. Re: the difference of opinions re: your hot spot I have learned to welcome just that. In fact, the more opinions – the better it is for you. Also, we have seen on this board that cancer cells may surface at any place. In fact, we have seen it appear in the lungs, bones, etc. although, the original tumor may be located somewhere else. We have also seen hot spots not to be cancer related. I am wishing for the later and placing all my positive energy in this direction.
Best wishes,
MarionSo, I felt pretty good after meeting with my Hep on Wednesday. He felt that the spot they saw near my bowels was no big deal and was likely my healing from the transplant and rue-n-y procedure they do in PSC transplants. He took me off Myfortic (anti rejection) and kept me on prednisone. I figured that made sense. My wife and I took that as good news and the last few days have been pretty good.
Fast forward to today and I met with my chemo oncologist. He’s not really willing to even remotely talk about surgery right now because he wants to take a wait and see approach with how things respond to the Gemcitabine and Xeloda. He remains unconvinced that it’s not seeded elsewhere and he pointed out a lot of fuzziness around my omentum on my most recent CT scans. He also mentioned that he thinks with my omentum being on the far side of my stomach from my liver that it’s highly likely that it seeded elsewhere. Have there been cases (Rick?) where people’s CCA have gone only from their bile ducts to liver and then to omentum without hitting other places in between? He also thinks that my Hep is being overly optimistic about the hot spot on my right side near my transplant site.
There’s always room for hope it just seems in smaller quantities right now.
On a happier side my wife, son and I are leaving for a 2 week Alaskan cruise on the 30th of this month. We have all the plans in place (I think) and a friend to watch the house and doggies.
Anyway, thanks for listening and I hope you all are doing as well as possible.
With love and light,
-leo
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