So far I have compiled data for 329 cholangiocarcinoma.org members and have found 11 other intrahepatic cholangiocarcinoma patients in the organization who were initially denied surgery because of multiple liver mets.  The multiple mets were found in one patient while undergoing a resection and the surgery was stopped because of it.  Later, after receiving chemo, which did not shrink the tumors, the patient was resected anyway.  Another of these 11 patients was like you, his chemo shrunk the tumors, and he had a successful resection.

I have also found 3 other patients, besides Percy, who have had a resection even though they had multiple liver mets.  One of these was like Percy, in that the surgeon did the resection knowing that the liver mets were present.  In the other two, the surgeons discovered the liver mets during surgery, but continued with the resections anyway.

Bruce

Bruce

Looking at your past posts, I see that your father's oncologist did not recommend  adjuvant therapy for your father following his R0 resection.

I checked my limited database developed from about a 9% sample of  previous posts to these boards and found the following regarding adjuvant therapy for intrahepatic cc patients who had R0 resections.

From May 2001 to June 2008, 5 patients had no adjuvant therapy, 2 had chemo only and 1 had both chemo and chemoradiation.

From November 2008 to Sept 2012, 1 patient had no adjuvant therapy, 7 had chemo only, and 3 had chemo and chemoradiation.  Chemoradiation included radiation combined with 5FU or Xeloda pills.

So, it appears from this limited data, that oncologists started changing their tune about adjuvant therapy being helpful to R0 patients around 2008.

Since mid-2008, the only oncologist (besides your dad's doctor) I have found who didn't recommend adjuvant therapy for an intrahepatic cc R0 patient, was associated with Mayo Clinic in Rochester, MN.  Others who did were associated with Emory University Hosp., Atlanta, GA; Sherman Health, Elgin, IL; Kaiser; Cleveland Clinic, Cleveland, OH; University of Pittsburgh Medical Center, Pittsburgh, PA; a hospital in Lebanon; Jewish Barnes, St. Louis, MO; Kings College Hospital, London, England; and Ochsner Hospital, Jefferson, LA.

Bruce

Thank you for the additional info on adjuvant therapy, I found reading that post to be very helpful.

We are planning to talk to more doctors about the ablation possibility.  Interestingly, I heard back from Dr. Choti at JHopkins after I sent him my Dad's medical files, and he is recommending that my Dad go with surgery (which would make it my Dad's second resection).  This is a totally new development as the onoclogist we've been seeing at UCLA had said that surgery is not the preferred route.  I am going to explore this more with other doctors!!  I understand that each person's case is different, but if you have any input from your experience, I'd love to hear it. 

All the best to you and your wife, and I hope the CT scan discussion on Monday will bring good news!!

Julie

http://www.cholangiocarcinoma.org/punbb … hp?id=9174

I'll take a further look in my database for doctors and hospitals that prescribe adjuvant therapy and those that do not.  My first impression is that doctors are tending to prescibe it more than they use to because of papers showing that it increases survival rates.

At this point we don't know if our doctor will give my wife radiation treatments because she has unexplained temperature spikes that show up from 13 to 19 days after her first chemo treatment in a cycle.  This has presented itself in each of four cycles.  The doctor says that radiation can be hard on the liver.  The planned radiation was to be around the surgical markers in her liver, because that is a common place where recurrence takes place.  We should find out about the radiation treatments this Monday when we meet with the doctor to discuss a CT scan which my wife had today.

Bruce

I was just catching up on this conversation thread, and found your explanations to be very helpful in understanding this disease, so I wanted to say thank you.

Holly, I hope your surgery went smoothly, and you are recovering well!  Given the good response to chemo, hopefully the surgery will only make the good better!

Bruce, I hope your wife is doing better with the chemo treatment as well.  I'm curious if the doctors have changed their mind on radiation given her current progress.  My Dad has two recurrent tumors (~1cm each) and we were recommended to go with ablation first, but the doctor also said he did not suggest chemo afterwards as an adjuvant/maintenance b/c if the ablation is successful then there would be nothing to track the response of the cancerous cells to chemo.  Based on you and Holly's explanations, I get the sense that the cancer cells may be lurking in the liver even if it doesnt show up with imaging given they are so microscopic.  I just wonder if you can share your knowledge on how doctors decide which patients to proceed with adjuvant and which ones not - or is it really just a treatment philosophy that varies by the doctor?

Thanks!!

Julie

As to the cHCC-CC, I do not know. The prognosis statistically is actually worse with this kind of cancer, but I believe that is because it is caught so late most of the time. I have no signs of cancer, no errant liver functions, no pain, no jaundice, nothing. I only caught it even at this late stage because I did not feel "well" and just knew in my gut that something was wrong and was blessed to have a doc who went in for an MRI based on very vague "unwell" symptoms and who listened to me.

As to the chemo it is anybody's guess. I think these cancers take different paths for every person. There aren't enough of us to put together a good picture or standard scenario. I think maybe I should be asking YOU all the questions! Thanks for all your good work with statistics, may the data give us answers!

Did the doctors think there may be some connection between your being cHCC-CC, instead of pure CC, and the great response?

Incidentally, according to the AJCC Cancer Staging Manual, 7th ed., the staging for IHCC with multiple tumors, with or without vascular invasion, no regional lymph node metastases, and no distant metastases is T2bN0M0 and Stage II.  The staging for my wife, who is IHCC, solitary tumor without vascular invasion, one regional lymph node metastases, and no distant metastases, is T1N1M0 and Stage IVA.  She would have been Stage IVA even if she had multiple tumors in her liver.  And yet, they resected her right away.  it just seem strange that they would resect a IVA and deny resection to a II.  Eventually, I should be able to calculate survival probabilities for Stage II without resection vs. Stage IVA with resection, but I need more data in the database to make the answer statistically significant.

Also, Choti and others said no before the MRI showing "all the little tumors" -- they just assumed that with mets, they would be there unseen.

But the truth is (for any of us) if there are ANY mets to the liver, there is microscopic disease you cannot see. If you have one main tumor and two other little ones, you can be assured you have other smaller ones that do not show up on any scans of any type - - yet. Every surgeon told me this also.

And there is no safe section of the liver once you have mets. You can resect out the tumors but what you have left you will have to be vigilant about. Adjuvant therapy, further treatments like rfa or stereotactic radiation, etc. will be needed to "clean up" the remaining liver. That is what I heard from all the surgeons. That is why ICC comes back so relentlessly! Actually, 'comes back' is not the right word - - it was there all along and it has just grown to where it can be seen on a scan. But at this time you are working on eradiating tiny tumors, not a big one.

So I am not a doc either, although I know I am not the only one on these boards who has been studying my liver anatomy like a med student, lol! I just wanted to correct any misunderstandings. The one thing I heard over and over was the necessity of a great response to chemo. If a case is initially unresectable and does not respond or grows on chemo, few surgeons, even Dr. Kato, will go in with any high hopes.

So I am off to surgery and will keep you posted as always! Thanks!

According to the surgeon who resected my wife's liver, at least 20% of the liver must be left to insure it growing back.  I believe that Dr. Kato would have resected your liver even if you hadn't had chemo.  In fact, I think he would have preferred that. 

We were lucky because my wife's first surgeon said "yes."  Then, at my daughter's urging we got a second opinion from another surgeon and he and his board said "absolutely no," fearing that they would have to cut out more than 80% of the liver and it wouldn't grow back.  They suggested a procedure to grow the healthy lobe and start chemo treatments to shrink the tumor. My wife's first surgeon was totally against this saying they would have to do the treatments for at least a month and then he would have to wait a month after the chemo was stopped before he could operate.  We ended up getting a third opinion from the first surgeon's mentor, who agreed with him, and the operation proceeded within a week, ending with an R0 resection.

I have since entered all of your data in my database.  If I had done this before I started this topic, I would have used Dr. Kato as another example of a surgeon who works around this multiple liver met excuse for not operating.

Good luck on your surgery.

Bruce