1 (edited by 2000miler Tue, 15 Jan 2013 13:35:42)

Topic: No Resection Because of Multiple Liver Mets

So far I've found 8 patients in the foundation's database who could not have an initial resection because of multiple liver mets.  However, Percy (PCL1029) had this diagnosis (main tumor in left lobe and 2 spots on right lobe) and yet Dr. John Brems, Loyola, Chicago, still performed the operation, resecting the left lobe and RFA on the 2 spots remaining on the right lobe.

Bruce Baird

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: No Resection Because of Multiple Liver Mets

Well, I have not yet had the resection surgery but it is scheduled for next week. I was told no by many because of one 7 cm main tumor and two smaller ones and many little ones throughout the liver, but with a robust response to chemo the surgery is a go and we will clean up afterwards, say my oncologist and surgeon. All said the response to chemo was key, that everything had to shrink or disappear. All said that once there is intrahepatic metastasis, there is disease throughout, even that which cannot be seen on scans.

3 (edited by PCL1029 Tue, 22 Jan 2013 18:00:28)

Re: No Resection Because of Multiple Liver Mets

Hi,
I think the difference in holly22a's case is that the patient has "many little ones throughout the liver".
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

4 (edited by 2000miler Sun, 10 Mar 2013 18:37:40)

Re: No Resection Because of Multiple Liver Mets

The "many little ones throughout the liver" may have been the deciding factor, but because of her statement, "once there is intrahepatic metastasis, there is disease throughout," I think they would have come to the same conclusion with just the 7 cm main tumor and two smaller ones, which is similar to what you had.

Holly22a, did your surgeons address what they would have done if the "many little ones" were not present?

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: No Resection Because of Multiple Liver Mets

Holly - I just finished reading all your posts.  I am not a doctor, but it appears to me that the reason you are going to have surgery on the 31st of this month is not because of any shrinkage of your multiple liver tumors, but because you were industrious enought to find a surgeon, Dr. Tomoaki Kato, who said "yes" to replace a surgeon, or several of them, who said "no."  I noticed that after three cycles of GemCis, your tumor markers came down but there was no mention of shrinkage.  Also, you wrote  "All said that once there is intrahepatic metastasis, there is disease throughout, even that which cannot be seen on scans," however Dr. Kato found a section of your liver which can be left in place after the resection.  Evidently he was not worried that this section could contain cancer cells which could not be seen on scans.

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

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

6 (edited by holly22a Fri, 25 Jan 2013 03:46:22)

Re: No Resection Because of Multiple Liver Mets

Thank you all for your responses to my case. @ Bruce, actually, you have it backwards in my case. Dr. Kato said no to surgery at first also. Every single surgeon I consulted with said, "do the chemo first and IF there is a robust response, surgery can be a go." (chemo was 1000 mg/m2 gem and 70 mg/m2 cis, a big dose) So I am very lucky that there was a huge response, not just in tumor blood markers, but in size and PET activity also. Main tumor went from 6.7 cm to less than 2 cm, many little ones just completely disappeared, etc. So Dr. Kato was no different than the others on that score. I chose Dr. Kato from the beginning because I like the way his mind works and I like Columbia/Pres Hospital, and because the oncologist and radiation guy are fantastic people and docs, too. You just have to have a whole team that you "mesh" well with and can communicate well with.

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!

Re: No Resection Because of Multiple Liver Mets

Hi, Ho, Holly, great explanation! You go girl! I say yes and that's all that matters! LOL Ha, Ha. Got your back all the way here. You will feel all the prayers from your family here, surrounding you on the 31st!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: No Resection Because of Multiple Liver Mets

Thanks for clearing that up Holly.  That's fantastic that you had such a great response to just four cycles of GemCis.  My wife has finished three cycles but hers is adjuvant therapy since she was resected with R0 results but with one positive lymph node. 

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.

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: No Resection Because of Multiple Liver Mets

That's really interesting, Bruce. Who was your wife's surgeon? I guess the mets to the liver should really push a patient off to stage IV? I don't know much about staging, but the liver mets is definitely bad news in this business.

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!

Re: No Resection Because of Multiple Liver Mets

My wife's surgeon is Dr. Trevor Reichman at Ochsner Hospital in Jefferson Parish, LA, right outside New Orleans.  An Ochsner Emergency Room doctor ordered a CT scan on my wife late at night, saw the tumor in the liver and an enlarged lymph node close to it, and put her in the hospital.  The next day she had all kinds of doctors visiting her, including about a dozen residents from Australia.  Dr. Reichman called it CC right from the beginning without the benefit of a biopsy.  I was impressed with him because he did liver transplants, had a PhD as well as an MD, and authored papers on liver resection.

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: No Resection Because of Multiple Liver Mets

Bruce, Holly,

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

Re: No Resection Because of Multiple Liver Mets

Julie - I gave some data for adjuvant therapy following resections in the following topic:

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

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: No Resection Because of Multiple Liver Mets

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

14 (edited by 2000miler Sat, 16 Feb 2013 15:27:54)

Re: No Resection Because of Multiple Liver Mets

Julie,

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

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: No Resection Because of Multiple Liver Mets

Holly, how was your surgery?

Bruce

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: No Resection Because of Multiple Liver Mets

Hi Bruce!  All went well. Then I had y90 3 weeks out and am back on chemo already two more weeks out. The proverbial "kitchen sink" approach. I am planning to post all about the experiences - - i am really just coming back from one hell of a month. Thanks for asking! There won't be any scans for another month since the y90 leaves the liver all inflamed and the mri's are "scary" according to my interventional rad doc.

Re: No Resection Because of Multiple Liver Mets

Holly...what a difficult time you have had - it is wonderful to hear from you though.
Wishing for continued healing coming your way and, dear Holly, can't wait to read the entire experience of the procedures.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: No Resection Because of Multiple Liver Mets

Thank you so much Marion! I will be posting more soon! xox

19 (edited by 2000miler Wed, 13 Mar 2013 13:05:44)

Re: No Resection Because of Multiple Liver Mets

Thanks Holly. I saw that you had posted elsewhere since your surgery and hadn't mentioned it, so I was concerned.

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

Please be advised that any advice or information in my posts is my personal opinion only and is not intended nor implied to be a substitute for professional medical advice.  ALWAYS seek the advice of your physician or other qualified health care provider.

Re: No Resection Because of Multiple Liver Mets

Hi Bruce and everyone else on here,

I am new to posting on this site but found this organization back in October of last year when my mother was diagnosed with Intrahepatic Cholangiocarcinoma. She had 3 rounds of chemo to try and shrink the multiple masses they found so that she would be a candidate for the resection.

After the chemo was complete, they found that the masses did NOT shrink, in fact they grew but scheduled her for surgery anyways. She underwent a resection of 40% of her left side of the liver.

When they began the surgery they told us that once they go in it's a very good possibility that they may not be able to complete it if more masses were found. Surprising to our surgeon is was confined to the left side and proceeded with surgery. That was exactly 6 weeks ago and she just went for an MRI last week and they found 3 small masses now her right side of the liver. They are planning to do more chemo starting as soon as next week.

My question about this topic relates to the initial diagnosis. I honestly feel that if they had proceeded with the resection immediately instead of months of chemo that her chances of it returning in the other side would have been severely diminished. Obviously I can't say that for sure, but it seems to me since the masses did not shrink why wasn't she a candidate for it immediately?

She is a healthy 65 year active woman who eats healthy, exercises every day and still works 14 hours a day. Even the doctors told her she was in very good health besides the cancer.

I'd like to know everyone else's opinions on that as well and appreciate any feedback.

My reason for posting this is in your prior post you mentioned that you have compiled data on 329 members from this site. Is this data available for anyone to read?

Thank You in advance,

Kim