January 14, 2019 at 10:07 pm #98006bglassModerator
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, MaryJanuary 14, 2019 at 6:06 pm #98005Badger847Participant
I am a man, 68, will be 69 on 1/17. On Oct 8, 2018, I had surgery to successful remove the cholangiocarcinoma tumor. I was told by the surgeon that the tumor was completely removed and I could use past tense and say I had cancer. I had no real issues with the surgery and was able to get rid of a walker within a couple of weeks of being discharged. I told the hematologists (2, the surgeon and supervising doctor) that even though they said I had major surgery, 9 inch scar from belly button up, I didn’t feel like I had major surgery.
I am now on a 6 three week cycle of chemotherapy as a preventative measure to ensure that any cancer cells are destroyed. I am taking 2600 MG @ day of Capecitabine plus 2 infusions for 2 weeks and 1 week off. Besides some constipation and fatigue, no issues with the Chemo.
So, when am I going to get hit in the head with a 10 ton safe?
Am I fooling myself in thinking I am cancer free?
Will the cancer return?
I asked the team what I can do to minimize the risk of it returning and was told I can do nothing.
I know the plan is to closely monitor me after chemo, in the first 12 months, an MRI 3 times and than twice a year for the next 2 years. And my primary is also monitoring me because I have high BP, controlled by meds. She has me come in twice a year for blood tests.
And thoughts or experiences on live expectancy?
Thanks for any and all comments!
Chris aka Badger
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