Newly diagnosed, a few questions
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Wow Kris, I guess you are right. That is a testament to imaging not finding everything if they can’t find a tumor that is grapefruit sized (I assume this was intrahepatic?). Thank you for sharing your story.
Hopefully the imaging will be a correct representation in my case since my only chance at a longer term survival is the protocol since I also have PSC and resection is not a good option in PSC. I go back to Mayo on Sept 8 to complete the transplant evaluation and then begin treatments. It looks like the protocol is 3 weeks of radiation, followed by brachytherapy, and then chemo 2 of 3 weeks until transplant. I hope I’ll still qualify for this – even though it sounds like a tough recovery after all of that.
Thank you all for being willing to share your journeys.
Rick
Hi Rick. I will try to answer some of your questions…
1) CC is considered a slow growing cancer. In reality that means that although it normally growns slow, it can speed up for reasons we dont know. Some people can show no growth in years while others can double in size in a month.There is no telling in advance what your tumor is doind.
2)Imaging is good, but not perfect. Sometimes the cancer is exactly where and how it shows up on the imaging. Sometimes there is more there. I had MRIs, CTs, Ultrasounds, and ERCPs and they saw nothing, but when they opened me up I had a grapefruit sized tumor. PET scans picked it up later, but pet scans can make mistakes too. It is the combination of data from the various imaging techniques that gives the best information, not one specific type of image.
3)Not sure on the CA 199 stuff. Someone else will have to chime in,
Good luck getting on the transplant list.
Kris
I posted earlier under introductions and had some nice welcomes and a few pieces of info. Thank you for that. Now, I have a few more questions I am hoping someone can help shed some light on.
I was diagnosed with a Klatskin. It is very small, I don’t have a measurement on it because it is so small it really doesn’t show up well on imaging. So, I was told by Dr. Gores and Dr. Heimbach that I am a candidate for the Mayo Protocol which is radiation/chemo followed by liver transplant. I have had an MRCP/MRI of the entire abdomen which showed only a slight narrowing in the bile duct (this is likely from PSC, not CCA), a complete abdominal ultrasound which was clear, an endoscopic ultrasound to biopsy lymph nodes which were clear, and 2 ERCP’s, with the last one getting a tissue sample that came up as cancerous at the bifurcation (Klatskin), and only a minor narrowing. There is also a narrowing in the cystic duct, but Dr’s believe this is not from a cancer and is more likely either my PSC or gallbladder disease related. So, based on imaging, there is not much there. The reason we investigated was an elevated CA 19-9 (scary high of 8000+), and the only way we confirmed was the FISH staining from ERCP. Here are my concerns right now and I’d appreciate any feedback.
1. The wait – between diagnosis and the transplant evaluation (starts on Sept
, there is a 17 day gap. If the transplant evaluation goes well, I will start treatment soon after, maybe another week off. How quickly does this type of cancer grow – will it grow and spread before we can start treatment?
2. The imaging tests show nothing other than the slight narrowing where the cancer is. Is it possible that they are missing something that is more substantial? How reliable are MRCP, ERCP, Ultrasound for detecting CCA and mets?
3. It seems very unusual for a CA 19-9 to be as elevated as mine (8000+) and only a very small cancer. Is it possible that the obstructed cystic duct (most likely benign) can elevate the CA 19-9? Or, does the CA 19-9 usually indicate advanced disease. If this is the case, I wonder why it wouldn’t have show up on all the imaging tests.There is just a lot of things in limbo right now and taking this 2 week break is hard and has left me with a lot of lingering thoughts. Knowing that I also have PSC significantly reduces my options if I fall out of eligibility for the Mayo protocol. I’d like to take the word of the Dr’s that they *think* this is early and that I *should* qualify for the protocol, but it just doesn’t all seem to add up for some reason. I’m not sure if anyone will be able to answer these questions from experience or not , but it’s worth posting to see.
I wish you all the best of luck in your own journeys. At this point in my journey I cannot imagine what you are all bearing but I hope that you are keeping the faith and staying strong. Thanks again for your feedback.
Rick
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