Sorry I haven’t written in a while

David,

Have you been given anything to help control the nausea? You might want to consider getting another opinion. It seems a long time to wait when you are feeling like this. Just my opinion and something to consider. Keep us posted. I will be hoping for the best.

Darla

David…..what I have been told is that everything is taken in account with the diagnoses of recurrence including, blood tests, scan results and your overall feeling of symptoms. When everything is “re-routed” such as it is with these resections it can easily become confusing because, the old “normal” is replaced with a new “normal”. Taken in account the fluctuation of test results, it is the trend of symptoms, blood results, etc. that will define your progress. Nevertheless, as Kris has mentioned, tests don’t always reveal a recurrence. Therefore, being vigilant is the most important weapon with this disease, which is exactly what you are doing. You might also want to consider eating different foods then you have before, moving around after your meal consumption, enzymes to help you digest, and making sure that you bowel movements stay regular.
Tons of good wishes coming your way,
Marion

David,
I understand the anxiety that you are experiencing. I was feeling it last week just waiting to get a scan. I knew I would get the results the same day but the wait to get the scan was awful. I will pray that you get good results. As Kris said, if there is something then it doesn’t mean the end.. it just means another battle in this war. My scan wasn’t good and the cc has returned with a vengence but I am not giving up. We all need to fight this monster so that one day they can find a cure. God Bless,
Jamie

David,
I just want to caution you. I had everything look ok…normal blood, clean scans and everything. But I had terrible symptoms so I had to have surgery so I could eat. What they thought might be scar tissue ended up being a thin, grapefruit sized tumor. I know that is not what you want to hear, but sometimes it is best to see the worst possible scenerio and then be suprised by good news.

David, I pray that it is nothing. I have all my fingers and toes crossed. But if it does come back, it doesnt mean it is over. It just means you have to fight a bit more.

I seem all doom and gloom, I dont mean to be. There are several people that had symptoms which were the result of scar tissue and other blockages. I guess you are the best person to know what your body feels like.

I hate waiting for scan results. I am waiting 10 days to get mine. I understaand your nervousness and can only say, we are all in this together.

Hoping and praying for your good results,
Kris

David:

Congrats on the remission news! I have a couple of things to add from my own experience: Regarding PET scans and CT scans: My oncologist doesn’t much like to use PET scans for cholangio. He says they can show too much other unrelated stuff and can cloud the issues. He prefers CT scans as being more specific. I also understand the discomfort of getting different opinions from the same scan. When I get a CT scan, there is always a slight difference of opinion between the radiologist, surgeon and oncologist as to the meaning of the scan. (Radiologist is usually the most pessmisitic and the surgeon is usually the most optimistic.) Reading scans is an art as well as a science, so you will never get two people to read a scan exactly the same way. I always insist on seeing the actual scan and make them explain to me what they see and why they have the opinion that they do.

While we are all thrilled to hear that you are in remission, one common thread on this discussion board is that cholangiocarcinoma tends to come back. If I were you, I would continue to get a CT scan done at least every 6 months for a long time, just to be on the safe side. If it does come back you want to find out earlier rather than later so you can continue to beat this beast!

Wishing you many years of good health and good luck!

Violarob in Texas