Introduction ——– And am I living in a fool’s paradise

Hi Chris,

Welcome to our community.

It is a wonderful outcome that your cancer was caught early enough that you could have successful surgery.  From what you’ve described, it appears that everything that could be done to keep you cancer free has been done, and your doctor’s optimism reflects this.

That said, I suspect you are writing because you are aware this cancer can reappear.  I am guessing from your doctor’s positive reactions to your case that you did not have any high risk factors discovered.  Even so, there are steps you may consider going forward that may help your peace of mind.

First, if you had any risk factors for cancer that might be addressed with a healthier lifestyle, now is a good time to see what you might do, e.g., to improve your diet, examine any smoking or drinking habits, or get more exercise.  Some folks consult specialists for ideas in this regard, others hit the library to do their own research.

Second, be sure you have a good surveillance plan.  The most detailed recommendations for post surgery surveillance I have seen are in the European Society for Medical Oncology (ESMO) Clinical Practice Guidelines for Biliary Cancer.  This report can be found through an internet search.  The most common surveillance plan reported by patients on this board is similar to the ESMO recommendation and involves quarterly scans (chest-abdomen-pelvis) and blood tests during the first two years.  This drops to twice a year during years 3-5, then annually thereafter.  Your doctor is recommending something less frequent — you may consider asking about this.

Some patients have CA 19-9 tumor marker tests more frequently than the other surveillance work.  In some (not all) patients, CA 19-9 can start rising up to nine months or so before a recurrence becomes visible in a scan, and would be a signal to your doctors to watch more closely.  Recurrence can happen without rising CA 19-9 results, however, so it is not foolproof.  In my own case, I am now three years past surgery, and my choice is still to have the CA 19-9 test every two months.

Third, your positive attitude is great and surely helped you in recovery from surgery.

You asked about life expectancy.  As your doctors may have already told you, there is no way of knowing.  This cancer is rare and as you can see on this board, patient experiences vary widely.  In my own view, the best advice I was given would have been exactly the same even if I did not have cancer – To get my affairs in order, then stop worrying about it and turn my attention to enjoying life.

Take care, regards, Mary