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    Dear Lizheng,

    I wanted to add a point to the info I provided below.  Post-surgery chemo or chemo radiation regimens (the medical term is “adjuvant” treatment) intended to avoid recurrence generally are only offered for a limited time period just after surgery.  For example, for the BILCAP trial, this limit for starting treatment was 12 weeks after surgery while for the regimen prescribed for me, the initial study had a limit of 56 days after surgery to be eligible.

    For this reason, I would like to clarify that advice “not to rush” really does not apply when one is considering post-surgical adjuvant treatment.  In this case, time is of the essence to determine if such treatment makes sense and then to get started.

    It is so positive that your mother was able have surgery and that she has had such a smooth recovery.

    Take care, Regards, Mary


    Hi Lizheng,

    Welcome to our discussion board.  I am sorry to learn of your mother’s diagnosis.

    Until recently, the medical profession did not have strong statistical evidence that chemo or radiation given after surgery offered a benefit in delaying or avoiding recurrence of CCA.  There were however a number of small scale studies suggesting benefits to different post-surgery chemo or chemo radiation treatments, particularly for patients with high risk features to their cancer, and the practice of many doctors in the U.S. has been to offer the option of post-surgery treatment to patients.

    This past year, however, a new and large study undertaken in Britain showed an important survival benefit for patients treated with an oral chemo – capecitabine – after surgery.  The study is referred to as “BILCAP” and you can read about it using an internet search.

    I have started to come across patients in the U.S. who are following this treatment after surgery, so it appears the medical profession here took notice of BILCAP.

    In my own case, I was treated after surgery with chemo and radiation, based on a regimen in one of the earlier small studies.  While every patient has his or her own response to treatment, in my case, I have been in remission so far for 27 months, even though my tumor was also large and had other high risk features.

    I would recommend that your mother ask her doctor about the advisability of post-surgery treatment and make reference to the BILCAP study, which got a fair degree of international attention.  Doctors look at a number of factors in deciding about treatments, including whether the patient will tolerate it well.  Your mother may also wish to seek a second medical opinion on this question.

    Please take your advice from experienced medical professionals who know this cancer – it is a rare one, so important to ask if a cancer doctor has experience.  This discussion board is a forum for patients and caregivers, so we are not dispensing medical advice, but you can read the stories and experiences of others on the cholangiocarcinoma journey.

    Please pass best wishes to your mother,

    Regards, Mary


    To add to my post and to be fair, each case is different so your mom might be fine if no other CC cells are in her liver.  Some cells are so tiny it is hard to see them on a scan. Best of luck with your mom. Wishing her all the very best.


    Thank for sharing on our site, it makes it easier for everyone to understand this challenging condition.  It is great that surgery worked for your mother.  Was the tumor close to any vein such as the portal vein or covering any ducts like the left or right hepatic duct?  What do they mean the tumor broke?  Does that mean it spread or there are remnants of the tumor still in the body?

    I have found from experience you have to closely monitor symptoms on a weekly basis.  Choosing the available treatments is a personal choice and it would be difficult for anyone to give guidance on what you should choose as the best for your mom.  I have discovered CC has many similarities, but somehow is different for everyone.

    Since she is feeling well and healthy after surgery, offer her great nutrition support and anything else that will give her comfort and joy.  Again, keep monitoring for any symptoms such as pain or any discomfort.  Get another doctors opinion if anything needs to be done at this point or you can wait.  This is not an easy situation, but don’t act out of panic or feeling the need to act so quickly without looking at all your options.  You are right in that studies have shown that the standard of care which is gem/cis does not have a high success rate, but in your situation is this what is being offered?

    My opinion is that it is great the surgery was a success and if doctors said it is okay to monitor, why rush into a treatment such as chemo which will make your mom feel very weak and compromise her immunity and if she is already feeling healthy, wait until anything changes.  (only my opinion, not advice as you know your mom and her situation better)

    Keep researching our site and update yourself on this condition, it is definitely not something to ignore as it is a life changer.  You must monitor week by week and act accordingly.

    I hope something helped, and I know others will offer advice and tips.

    • This reply was modified 5 years, 2 months ago by positivity.


    I had a tumor removed 2 1/2 years ago with clean margins, hence the doctors did not recommend chemo. First scan 3 months after surgery was clear but on the next scan 3 months later hence 6 months after surgey 2 small tumors showed up and am wondering if chemo after surgery would have prevented that.  You may want to get a second opinion.



    My mom was diagnosed with Intrahepatic CC last month in China, the tumor was huge (12-14 cm) in the liver, but fortunately, the edge was clear and the doctors were able to remove the tumor completely by cutting off half liver and the gallbladder too, with no cancer organism spotted around for now. The doctors was very unclear about the stage, to my understanding if the tumor can be removed, it shouldn’t considered as the latest stage, but the doctor said since the tumor broke (that was why my mom felt the pain and went to the hospital), that it should be considered as very late stage… anyway, there was literally no treatment plan after the surgery, just regular check-ups (every two months). My mom recovered well from the surgery, just felt like a healthy person. I’m very concerned about the fact that we are doing nothing at this moment, i read in articles that chemo and radiation treatment might not be very effective for CC, but still, doing nothing worries me a lot! Please advise and god bless we all, thanks.

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