bglass

Dear Fred,

It is important to seek good surgical opinions, as some surgeons are more aggressive than others. There are surgeon recommendations on this board, if you search a bit.

My understanding is that re-resection is a preferred approach for recurrence if technically feasible and if the cancer has not spread. There are a number of discussion board colleagues who have had multiple resections. But many cases are not appropriate for more surgery, and other types of treatments are used.

The fact that one surgeon with whom you have consulted sees potential for surgery seems encouraging, even if you have other opinions in the mix. Personally, I tune out when a doctor tells me “all the other doctors will say the same.” Most doctors encourage second opinions.

Best wishes as you investigate treatment options.

Regards, Mary

Dear Tia,

I agree with you that capecitabine seems a little overlooked. The BILCAP study results will likely change this.

I took capecitabine as part of an adjuvant therapy after a liver resection. At the time one of my doctors asked the question “why not gem-cis rather than gem-cap?” since gem-cis is considered the standard of care as a first-line chemotherapy. But the study behind the protocol I was given pre-dated the big gem-cis trial, and included capecitabine not cisplatin, administered with gemcitabine.

At the time I tried to read what I could find, which was a few small-sample studies. What struck me (this is a completely non-expert patient observation) was that the regimes that included capecitabine often had overall survival rates slightly longer than other chemo combinations. (As a patient, I tend to read past other end-point measures to look for overall survival.) By slightly longer, I mean by a month or two. Also capecitabine is in pill form, which is easier than a cisplatin transfusion. The adverse effects seemed less scary to me with capecitabine when compared to the platinums, although I had pretty bad hand-foot syndrome by the end (my experience, not everyone experiences this.). So I was fine with having gem-cap rather than gem-cis.

I do not believe there have been any randomized studies yet directly comparing gem-cis with a capecitabine combination. The famous gem-cis study (also from U.K.) compared that combination to gem alone. Great Britain seems to me to have an advantage for medical research in that its care system is centralized. So for years apparently, CCA patients there who had liver resection surgery, if appropriate candidates, were encouraged to consider participation in BILCAP. This helped the study to recruit relatively large numbers of patients with this rare disease, and to produce results with statistical weight.

I have been reading this board for nearly two years now and do not recall seeing many or any U.S. patients reporting having BILCAP-type adjuvant treatment, namely eight cycles of capecitabine.

Regards, Mary

Marion, thank you for posting. This is amazing news. I guess the docs can no longer say there is “no benefit” to adjuvant treatment after resection. Regards, Mary

Dear Joe,

Please accept my condolences and prayers at this difficult time. You and your family did everything in your power to help your mom face and cope with this terrible illness, and bring her comfort and peace.

Regards, Mary

Jeff, let me chime in with some observations on the criteria used in determining if surgery can be performed in a case of intrahepatic CCA, based on my own experience as a patient.

What I was told during my medical consultations at the time is that to be operable, the cancer generally must be confined to the liver, in other words it cannot have spread. In my case, my recent colonoscopy and mammogram results were considered to verify no other cancers were going on and I was sent for an endoscopy, in addition to the scans of my liver. There is also a calculation made of how much of the liver would have to be removed, as there needs to be enough left behind for healthy liver functions. The doctors also must look at how difficult the surgery would be, e.g., is the tumor wrapped around major veins or are there other features that would make surgery highly risky.

In my case, the tumor was large, spanned both the right and left lobes and was near a major vein. These factors were why I was originally deemed inoperable and was advised to have chemo first to shrink the tumor to a point where surgery would be less risky. Subsequently, a surgeon took a second look and felt surgery could be possible. As a first step in the operation, he examined the area laparoscopically to be sure there was no spread and that the planned surgery was feasible.

The advice to try chemo when surgery is not immediately possible is not uncommon, and as you can read in postings on this board, a number of surgeries were made possible by the initial chemo. In addition, other liver-based treatments may be possible should surgery not be an option.

It is also my experience that outside of doctors who specialize in liver cancer, most others have seen few or no cases of CCA.

I hope your mother-in-law’s upcoming medical consultations are fruitful, and result in a clear treatment plan.

Regards, Mary

Dear 76%,

I am sorry to hear that your CCA may have recurred.

The question of surveillance after resection for our rare cancer does not seem well defined, and different doctors approach surveillance differently. I am not a doctor or medical researcher but did try and look into surveillance as a CCA patient.

The research evidence on the value of regular CA 19-9 testing post resection for CCA is pretty sparse. I found one study that seemed to suggest that CA 19-9 will rise and predict recurrence maybe half the time, while the other half of the time, CA 19-9 may not move even if the cancer is recurring. Also there is no evidence one way or the other that catching a rising CA 19-9 early improves survival for CCA. This type of study has been done for other cancers and their tumor markers, and the results are mixed from cancer to cancer.

The small amount of research on this suggests that a rising CA 19-9 can in some cases precede any other visible manifestations of recurrence by a few or even many months, which leaves the doctors with a quandary of whether to treat based on CA 19-9 alone, given that CA 19-9 can fluctuate or rise for benign reasons. If there is no visible evidence yet of where the recurrence may be hiding, then steps to determine appropriate treatment, e.g., biopsies, are not possible.

Doctors tend to consult the NCCN guidelines on surveillance which recommend considering imaging every six months for two years as clinically indicated. The European ESMO guidelines are more aggressive and recommend scans and tumor marker blood tests every three months in the first two years. Doctors do express concerns that more aggressive surveillance may raise issues with insurance companies.

Here are the ESMO guidelines: https://academic.oup.com/annonc/article/27/suppl_5/v28/1741490/Biliary-cancer-ESMO-Clinical-Practice-Guidelines

The plan for surveillance should be discussed between doctor and patient. In my own case, I am now 18 months out from resection, and have a CT of chest-abdomen-pelvis every 3 months, and a monthly CA 19-9, which will be the plan for the first two years. This reflects that my pathology report after surgery showed high risk features.

I hope the diagnostic studies you are having find something that is treatable so your good results post-resection continue. Fingers crossed that the news is good.

Regards, Mary

Hi Jocelyn,

Welcome to the discussion board. I am sorry to hear that your brother has been diagnosed with this complicated cancer.

I do not have direct experience with trials so regretfully cannot address your questions about them, but I did want to offer a little information on the trial you referenced. Like you, I found the write-up intriguing and tried to find out more, but saw that the only location seemed to be Mongolia. It is difficult to know how valid the reporting is on treatments only available in distant places.

Here is a write-up about a person in Colorado treated for hepatocellular carcinoma with the HCC trial drug mentioned in the CCA trial description.

http://www.bluefaery.org/blue-faery-stars/

There should be answers and experiences related to your million questions among the postings on this board. The search feature works well in getting users quickly to needed info. Or just ask your questions to the group.

Best wishes as your brother pursues treatment options.

Regards, Mary

Marion,

In my case, my doctors recommended adapting the SWOG S0809 adjuvant treatment for me even though my CCA is intrahepatic. In the SWOG S0809 reporting, it is clearly stated that intrahepatic was excluded and in fact, there is a review of the study I saw praising it for not including all types of CCA.

The other (chemo-only) option I was offered is an adjuvant treatment used for pancreatic cancer that has a good study behind it. I don’t think there are many (or any) intrahepatic patients represented in the studies of adjuvant CCA treatments, or if so, the numbers are small. So doctors have to improvise!

Regards, Mary