New to this

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

Hello,
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 6 years, 11 months ago by positivity.