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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

Hi Fay,

I don’t have personal experience with Dr. Schroff or MD Anderson, so cannot be of help there.

I did want to make an observation about the reviews of doctors on the websites that do this.

For myself, my first criterion is the doctor knows what he or she is doing, and and can keep me healthy.  My second criterion is that communication between us is adequate, e.g., the doctor listens to me, explains things sufficiently, is not impossible to get in touch with.  The doctor has to be great in the first criterion and not horrible in the second, in my personal way of thinking about this.  Each patient may view this differently.

Looking at the review sites, the expertise of the doctor is not always commented on.   Sometimes patients get riled up over non-medical things – “we had to wait an hour” or “the billing was wrong” and then give one star because they are annoyed.  For me personally, such problems can be forgiven if the doctor is expert and is going to keep me well.

With cancer, I would add, it also helps if the doctor practices where there is a great support system, because cancer usually demands a team approach.  At one point, a cholangio doctor was recommended to me who is part of a stand-alone gastroenterology practice that from its website seemed not to be affiliated with a major cancer center.  The individual has a terrific bio, but I wondered how it would work with no tumor board or pathology department lurking in the background.

Best wishes that you and your mom find just the right doctor.

Regards, Mary

Hi Mark,

Thanks for your update.

You asked about the mechanics of the board.  What you post is seen by all readers.  If you want to reach out to a specific board member, there is a private message function which you can access by clicking on the “send a message” button under the board member’s user name on the left-hand side of the message.

There is a huge variety of experiences with this cancer, so by posting so all can see your message, it is more likely someone who has experience with your area of concern will see and can answer.

Gemcitabine with cisplatin is a common first-line treatment.  The biopsy and genomic testing your doctors are recommending is certainly the wave of the future now that precision medicine is becoming a mantra for cancer treatment.  If you are concerned by the high cost of potential off-label medications, please be aware that some (not all) pharmaceutical companies offer financial assistance to qualifying patients, so that is worth checking out on the company websites.

Whether to have a second opinion is up to you.  There are merits to this with a complex cancer.  Reflecting on postings on this board, some examples of reasons for pursuing a second opinion have been (1) to be absolutely certain whether or not surgery is an option and (2) when needing to choose among treatment options, e.g., if there are multiple clinical trial options.

Your family members are spot-on correct in my humble view in encouraging that you take a strong role as self-advocate.  I felt like having this rare cancer sent me back to school, as I had to acquire a lot of information to look into treatment options, and to deal with medical professionals I encountered who have not seen many patients with my cancer.

I hope you are still considering attending the Cholangiocarcinoma Foundation annual conference at the end of the month.

Take care, regards, Mary

Joy,

Happy New Year!  I was happy to hear that your spouse got through his surgery.

I went back and looked at my blood test results just after my (resection) surgery, and they were off kilter for a few days, eventually settling down.  Whipple is a very major surgery, so it may take some days for the plumbing to get back to more normal operation.  The doctors and nurses should be able to tell you if the elevated bilirubin is just part of normal recovery or something that needs monitoring.

Fingers crossed for a comfortable recovery.  I hope the current miserable East Coast weather is not affecting you too much as you cope with your husband’s hospital stay.

Regards, Mary

Hi Mark,

I am sorry your visit to the gastroenterologist was not more productive.  My guess is the subsequent meetings with the oncologist and radiation doctor will be more action-oriented and give you options for a path forward.

My impression reading this board is that this cancer is highly variable and the range of treatments out there reflects that CCA manifests itself a little differently in each case.  Your doctors will try to tailor your treatment to your particular circumstances, and will take your own views into account.  The fact that there are different treatment approaches in no way suggests that doctors are unclear how to manage it.  You may, however, want to consider seeking a second opinion, which is generally a good strategy when facing a complex illness.

Take any survival numbers thrown at you with a HUGE grain of salt.  This cancer is so rare that there just aren’t very good numbers to make any kind of prediction with.  Your CCA seems to have been caught early (no nodes and no spread) and you are being seen at a major cancer center with good experience.   These factors bode well for you.

It was a great suggestion that you consider coming to the Cholangiocarcinoma Foundation Annual Conference.  It is an opportunity to hear the latest from the leading doctors and researchers, and to meet other patients.  The information on the conference is available on this website.  I hope we will see you in Salt Lake City.

Let us know how your next round of consults goes.

Regards, Mary

Thank you Gavin for all the work you do to search the medical literature.

When I looked at this article, my initial reaction was “Yikes, you can get mets in your scalp?”  But this is of course extremely rare, in fact so very rare that the authors were able to get a publication out of it.  There are other articles I have seen, some of which Gavin has posted, that also describe cases of a patient with an extremely unusual location of CCA mets.

For me, the lesson in this is that with CCA, as a patient I must be very attentive to what is going on with my body.  Any bothersome pain, new symptom or other factor that seems out of place should be on my list of questions when I see my doctors.  Chances are excellent that I will NOT end up starring in some doctor’s medical journal article as an unusual case, but we can all have better peace of mind by asking questions to our medical providers about any concerns that come up.

Happy New Year everyone!

Regards, Mary

Randi,

It is so nice to hear from you, and so inspiring to learn you are at eight years and counting.

In my early months after diagnosis, like many, I lurked namelessly on this site, and read and read and read patient stories, including yours.   The stories gave me a lot of hope, as did the comraderie of this board.  Thank you for sticking with us, and please keep checking in.

Regards, Mary