New member seeking your collective advice

Julie...welcome to our site.  This cancer is known to have a high recurrence rate hence we like to compare it that of to a chronic disease.  Consequent treatment options are limited to the area of occurrence (near major vessels, etc.) You would want to consult with a variety of physicians i.e. radiation oncologist, oncologist, and the surgeon for possible treatment options.  Additionally you would want to peruse our site.  It is loaded with useful information from those searching for answers and those sharing their experiences with us.  When entering key words such as "recurrence, surgery, chemotherapy, etc. many previous discussions will show up. 
Additionally, don't hold back from asking questions; our members are the best friends anyone could ask for and always are here to help.
So glad that you have found us.  With your strong family support, experienced physicians, and all of us on this site, your Dad is bound to benefit the best possible available to him.
Surely others surely will chime in real soon.
Hugs,
Marion

Hi Julie,

Welcome to the family!! I am sorry to hear about your Dad. My daughter has CC and is going to be having surgery soon. So I don't personally know about recurrence and hope we never do!!! There are many people that have had resections and recurrence. One person that comes to mind right away is Lisa. She has had 2 resections and about 5 recurrences. So she is an expert. Hopefully, she will see this and comment. She is a good friend of ours and loves to help. You say your Dad is stubborn and tough. That is a good way to describe my daughter as well. I wish your Dad all the best as he continues his fight.

Love,
-Pam

Hi Julie,
I had two liver resections followed by chemo both times. I still had 5 recurrences. I have had steriotactic radiation three different times. The first treatment cycle destroyed two small tumors. The second time it destroyed two more. I recently had radiation and will have a scan on March 19 to see if it worked on one small tumor. Please call me with any questions 330-903-6868.
Lisa

Hi,
May I ask where you and your family immigrant from,some I have an idea of other possible risk factor to help to answer your question in the future?
What age is your father at time of diagnosis?and what stage was diagnosis?
It is normal not to prescribed adjuvant chemotherapy after resection if had clean margin. the size of liver tumor 5cm is relatively small and  that may be the reason not to have adjuvant chemotherapy afterwards.
I do not think  you oncologist is specialized in treating cholangiocarcinoma and may not understand the prognosis of the disease well enough . but he is not wrong not to have your father put on adjuvant therapy either since the guideline of treating this disease is murky at best.

In my own experience about the growth rate of   intrahepatic tumors which have chronic hepatitis B as a risk factor;   It took about 10 month after stopping the adjuvant Gemzar chemotherapy to develop the two  tumors   before the second resection . It grown to about 2.5x3cm and 2.1x2.5cm in the  final  diameter; so it is relatively slow in grow rate for my case.. RFA can take care of both of them; but my one tumor was located in section8 ,at the top end  of live dome  and at the back side of the liver and  have contacted,but not grown into  with the right hepatic vein . the tumor   had  made  contact with  the diaphragm. therefore they had to performed a 2nd resection to take it out.That is why location is more important when using RFA treatment than the size of the tumor itself.( if in doubt, and resection is possible, go with resection).
With regard to your father's case; the growth rate of your father's tumor may be slower than me; if no other risk factor or other health issues involved (just my guess, I am a patient and not a doctor);"moderately differentiated cholangiocarcinoma" is much better than poorly differentiated CCA).
Here is my suggestion to which you have to consult with an interventional radiologist to see whether my suggestions make sense.  will wait for a couple more month to see whether there are other little tumor/s will pop up and if so,you can take care of those in  one RFA treatment whether than do it again twice. The key here is the location of your tumors; if it is located near the important parts of other organs such as blood vessels and nerve systems and diaphragm ; then let  your radiologist determine the course of action.
good luck and
God bless.

Hi, Julie,
Please excuse for my late reply, I have just back from Hongkong, And I have to sleep in between during the day today to regain my energy. It was exhaust and stressful traveling with family members who had to traveled for 22 hours on the return trip(usually takes 13 hours) because "Cathy Pacific Airline" let a passenger on board without the correct passport and after four hours of flight the plane have to return to Hongkong for re inspection.(a waste of  almost 10 hours of my time ;if I did not get DVT this time I will be lucky).

Back to the questions; I am sorry,I should use the term "nonsurgical therapies" to describe the use of RFA instead of "palliative procedure". For tumor<3cm, there may not be any difference between percutaneously  RFA and surgery. (the 2  following articles may give you more info about RFA vs surgery.)
1.Chen MS,Li JQ,et al. A prospective randomized trial comparing percutaneous local ablative therapy and partial hepatectomy for small hepatocellular carcinoma. Ann Surg 2006; 243: 321.
2. Huang J, Yan L, Cheng Z, et al. A randomized trial copmaring radiofrequency ablation and surgical resection for HCC conforming to the Milan criteria. Ann surg 2010;252:903
Despite the encouraging RFA data, most clinicians consider that surgery is preferable, if it is feasible,even for small tumors. Long term survival rates of 40 % or higher can be achieved with limited hepatic resections. In carefully selected patients having no vascular invasion by tumor,solitary lesions without intrahepatic metastasis, tumor diameter</=5cm, and a negative margin of >1cm,up to78% 5 year survival rates following resection have been reported---from uptodate.com literature review version 19.2: May 2011 on" nonsurgical therapies for localized hepatocellular carcinoma: radiofrequency ablation,percutaneous ethanol injection,thermal ablation,and cryoablation."
Usually it is the liver surgeon who will recommend reresection or RFA procedure to treat the recurrence and not the oncologist since  the surgeon is more specialized on that field and not the oncologist. medical Oncologist specialized in using chemotherapy and targeted agents to treat the cancer.I think DR. Finn  would send you to the liver surgeon for consultationfirst  But if Dr. Finn felt confident enough, he can do that too;I won't be surprise he will recommended RFA after he saw your father's CT scan report.I have no ideas how good he is in treating CCA, I just  thought that he should let you talk to the liver specialist first.DiD he? You can google him on the internet to find out his credentials and specialties . But if I were you, I will definitely try to get a 2nd opinion from the  surgeon that first operated on you father to get his opinion on RFA. The 2 articles I mentioned above may help you to make a decision on the new development offered by Dr. Choti from JH.

I do also agree with the last paragraph about what the  UCLA oncologist (Dr. Finn or others)had said to you. and may be to your surprise, if this  is exactly what will happen to me, I will choose ,if location allows, RFA over wedge resections of the tumor unless surgery can be done through laparoscopic  means..Julie, in treating CCA, a patient has to learn a lot about himself/herself as well as all the info. that are related to CCA and make the most logical choice for him or her. Your father is from Mainland China and i am from Hongkong;your father is 63 and I am too. It took me  about 10 months to have the recurrence and so did your father. In short, your father may be in the same course of treatment like me in the future to come.But your father may not realize how lucky he is . The best gift that  God give to your father  is the early diagnosis that allows your father to have the best chance for long term survival and that is exactly like the situation I am in . I am a ICCA patient for 45 months now and this is the Grace of God that given to me as well as to your father.
BTY, does your father has Hepatitis B(active or Chronic)? If he like alcohol, he should be advised to stop by now.
In your father's case CCA is more or less like a chronic disease like high blood pressure or diabetes; it is a long and winding road; it needs keeping up the new development and knowledge in order to have the chance for a better and well tolerated treatment plan or the finding of the miracle-- the cure.
keep in touch,
God bless.

Julie,

I don't have much to add to this discussion but wanted to say welcome and sorry you have reason to find us.  Sounds like you are a wonderful advocate for your father.

Take care,
-Randi-

Thank you all again for the wonderful advice and support, this forum is such a silver lining in this process.

Bruce - incredibly helpful info on the staging, I believe this is the first time I have a clear understanding of how the staging of this cancer works!  I had read the NCCN guidelines and thought the oncologist's staging response was indicating more advanced disease than my Dad's case, and your explanation gives me a better understanding.  I will have this in my back pocket next time I talk to Dr. Finn, though I doubt this will change his recommendation for treatment - he seems to take the approach that once there is evidence of recurrence, it's not relevant what the staging is or what symptoms are present, it's more important to just talk treatment.  While I understand his perspective, I still feel that patients have the right to know.  So thank you for this!

PCL - thanks for the articles, I will read them to get a better understanding for RFA vs. surgery.  I am miffed that Dr. Finn (oncologist) didn't send us for an appointment with Dr. Busuttil (surgeon) because my first inclination was to ask Dr. Busuttil what his thoughts are on surgery.  Dr. Finn thought surgery could be challenging given the tumors are in two different locations and that with recurrence, it's going to need systemic treatment like chemo.  But then he recommended RFA w/o follow up chemo.  Ugghh, now I think about his logic, it's making less sense...  I am working on getting a second opinion from USC based on Mark's suggestions, in addition to talking to other hospitals in the country. 

To your point, we feel fortunate this was caught early and want to continue learning and working on treating this disease.  Since the diagnosis, we as a family have been doing a lot of learning, about this disease, about the liver in general, nutrition, exercise, attitude etc.  As you know, there's a lot of medical knowledge that we are constantly learning and digesting and applying to my Dad's treatment.  My Dad used to drink and smoke in his younger days but has stopped both for years now, and he has not had Hepatitis B.  Now we have adopted a much healthier lifestyle, both on foods and exercise, but also as it pertains to work and stress etc.  Nothing more important than staying healthy and time together as a family!

All the best,
Julie

Hi,
all I can say about Dr. Finn is that he is either very experienced or otherwise.
the best person that can tell whether RFA is possible and safe is the interventional radiologist. every medical professional have special expertise in the field they practice;otherwise we can just go to our GP and get everything done.
BTW, Ask your Dad or mom to  cook some "eight precious soup" and put a piece chicken without skin and fat in it. take it a couple time a week and all of you can drink it too.
Eat less red meat; consume more vegetable and fruit and keep hydrated all the time.(6-8glass of 8oz of liquid). and remember, do not spend money on the quick fix like purchase herbs or medication from mainland china with unproved claims.. spend more time on the research of western medicine instead.
God bless.

Hi PCL,

I am not a dietitian, but like many others on this board, I have been cramming medical and nutritional knowledge like I was back in school studying for a seriously difficult exam.  On the nutrition, I have been reading both Chinese and western nutrition books, cross referencing research and articles.  There's a lot of info out there but I also find that some are unreliable, while others have good intent but are not necessarily true.  For example, there are a lot of articles on foods that are good for the liver, but there is a subset that's better when a person has liver cancer.  Anyhow, there isn't a doctor in our family so I've been doing a lot of cross referencing to make sure we're not eating things that are harmful, but there's still trial and errors, usually through how my Dad's skin responds.

On the yam - we find the easiest way to eat it to be steaming.  I know it might not be palatable to those used to a western diet, but steaming is fast and preserves the nutritional content best.  It's hard to cook the yams directly into foods, as it usually takes too long to cook and disintegrates by the time it's cooked.  We've found the yams that's orange on the inside to be the least starchy and Dad mostly eats that kind.  Hope this is helpful!  Just a caveat tho - this is purely based on our experience and research, I'm not a nutritionist.

Julie

Some Yam recipes for you Percy.

http://www.bbc.co.uk/food/recipes/search?keywords=yam

Good cooking!

Dear Jayne, my own personal belief after going through this for almost 6 years with my Teddy is the most important thing is to keep eating. I am recouping first hand from a horrendous bout of Ulcerative Colitis and I almost starved to death.  This has been even worse than my own rare Cancer. They were ready to put in a TPN, not a good idea and no one wants it, and I turned the corner. Without "food" we cannot fight what we need to fight, we have NO strength, one bad thing can lead to another, and it takes forever to build back up. So, between Teddy and I my vote is eat! What I would not have given for him to even eat the scrambled egg he wanted. Sometimes I think we get too caught up in distractions and it has never been proven that these so called health diets have made a difference. You know, it's like when they say that sweeteners are bad for you. Ask any researcher and they will tell you that you would have to sit and eat a truck load! Yuck. I say, "let them eat cake, in moderation".