pcl1029
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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 diameter1cm,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.Hi,
a positive attitude is most by far one of the good medicine that keep me going. I hope it will be the same to you.
cholangiocarcinoma ,to me, is a chronic disease and it requires knowledge and courage to navigate on this winding road. Like many other members on this board,all of them are very smart and know what they have to do in order to survive for as long as possible and in turn contribute their experiences to other people who will come by for encouragement and knowledge and to smooth their future journey; we may not get there in time for us but it may be in time to find a cure for the future generation to come. and trhis is why we all work so hard. Welcome aboard.and
God blessHi,
if you want to know more about scans and how it works;after you reading thur it, I am sure your Scan anxiety will be decrease a lot’ here ia the liekn. if you are interested.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6543
God bless.
Hi,
Just a caution note for you. James cancer center is famous for it clinical trials research for patients. so when they present you with clinical trial,especially Phase I or early Phase II clinical trial, think twicebefore you say yes.
get an 2nd opinion from another state like univ.Michigan for medical oncologist as well as interventional radiologist consult for possible different treatments before you making up your decision for clinical trial in James cancer center.
God bless.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 2.1×2.5cm 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, everyone,
For your info.especially the new members;besides we have volunteers like Barbara and others to man to booth all the time at each of the ASCO; we do have volunteers to attend different medical seminars(like P53 gene’s relationship with different pathways of cancer); special sessions of research( like develop” organ in a chip”- ie: a” liver in a chip” to study and shorten the time of medication research phase I and early Phase II that requires for approval a new drug application in stead of using human.; poster sessions for uptodate reseach results and new ideas;public and FDA policy(like REMS) and the complimentary and Alternative(CAM)sessions for newly discovered therapies that can be compliment to the current western style medicine and practice (like Yoga,meditation ). Last year, ASCO even added liver malignancy sessions which include experts in the surgical,oncology and radiation fields to present their takes on treating the liver and biliary diseases. A lot to learn and a lot to choose from for our CCA disease.In short, we are really working hard both upfront and behind the scene for all the medical conventions in order to get the most current medical development trends and information of this disease and pass on to you . For all of what we do, we try to increase our connections to the world and increasing our knowledge to fight against this disease. I hope our double edge sword method will shorten the time for the discovery of a better and more effective tolerated regimen for the patients who are suffering now and the miracle cure that eluding us in the past for the future CCA patients to come.
God bless.HI, Gerardo,
I am sorry for the passing of your wife. You are a gentleman and care enough to inform us at such a early moment of her passing;for that, I am grateful for your thoughtful gesture.May the Love of Jesus, the Grace of God and the Fellowship of the Holy Spirit be with you always no matter where you are.
God bless.Hi,
First ,Mark, May I ask who are the oncologists you have asked about the “maintenance” chemotherapy and say no? and did they give you any reason why or why not? Thanks in advance for your help. Can you ask Dr. Lenz about “Xyloda maintenance” and see what he thinks. I Appreciated.Second.
Julie, to have 2nd opinion by an interventional radiologist is a good idea;s/he can provide you the info. whether it is possible to do RFA or Microwave Ablation on the tumors base on its size,but more importantly whether the locations of the tumors allow the RFA procedure can be safely performed.
Therefore the location is the 1st concern and the sizes are the 2nd.
Sizes upto 3cm, no more than 3-4 tumors, are ideal for RFA or Microwave Ablation procedure. They simply just insert the “needles” and burn off the tumor inside the liver with a margin a bit bigger than the size of each tumor for a clean margin. Patient can go home the same day or may require a 24 hour observation only in the hospital. there are no pain, no nothing with regard to side effects.
There are a few recent articles indicated the possibility of better outcome if adjuvant therapy done after liver resection as compare to medical articles a few years ago of the uncertainty and possible benefit of using adjuvant chemotherapy and/or chemo-radiation combination after CCA resection and surgery. (RFA is not resection,it is simply a palliative procedure and not a cure. and it does not required adjuvant therapy to follow after RFA treatment; chemoembolization is another palliative procedure for tumor>5cm that RFA cannot fully provide the benefit because of the large size of the tumor.)
God bless.Lanny,
I am sorry about the news of Cindy’ passing. Your love of her shown thru out the message your written above. You are a caring husband to your wife and kids.
“I will always keep her in my heart and see her in the face of our 6 year old grandson”,Lanny ,You are a romantic gentleman and for that I have to tip my hat to you. I am also a fan of Judy Collins too.May the Love of Jesus,the Grace of God and the Fellowship of the Holy Spirit be with you always.
God bless.Hi, Marcos,
I am sorry about your mom’s passing; but out of all this bad things had happened , you had shown your courage to reach out and try your best to help your mom.
Marcos, I have 4 children and if just one of them will do what you have done, I will die with a smile on my face ,knowing that they have a good upbringing and a good heart to care about their parents ,brothers and sisters.You are a good son and a good example of love and devotion to your family.
Thanks for your detail and chronological description above, it will help us to understand more about this disease. Thanks .God bless you.
Hi, Daughter,
Stage IVA means “tumor with periductal invasion. In short it means tumor is growing along the intrahepatic bile ducts on both gross invasion and microscopic examination (T4N0M0); or any T (tumor or tumors) with regional lymph node mets present.(any T N1M0).
I am just a patient and not a doctor;but base on your description of your father,
I believe he has the T4N0M0 stageIVA and is correct in its classification and diagnosis.
“normal white blood cells and normal tumor markers” as your message indicated do not correlate with the tumor development especially in intrahepatic cca. due to the fact the liver is a very large organ and the tumor grows alongside the bile ducts and not obstruct the bile flow;since the tumor is not metastasized out side the liver;the bone marrow which in charge of production of the blood cells -WBC,RBC,Platelets etc.is not affected by the tumor at the earlier stage and therefore the labs result will be ,most of time ,normal.
Tumor markers like CA19-9 and CEA in the serum is not reliable and should not be use in the diagnosis stage esp. for ICCA. the best use of the trend of biomarkers are for follow up of chemotherapy treatment effectiveness.
I hope I answer some of your concern about this disease.
Gemox(gemcitabine+oxaliplatin) is an effective chemotherapy regimen,Side effects are not too harsh as gemcitabine+cisplatin and the efficacy is on par if not better than Gemcitabine+carpoplatin.
CT scan after the “determined cycles” that has to take ;along with the trend of the tumor markers will provide the info. for the doctor’s evaluation for the next step of treatment for you father.
God bless.Hi,
Which hospital your dad get the liver resection and who are the doctors?
Are they liver surgeon or just GI surgeon in general?
This disease required liver specialist (surgeon) to be operated on.It requires skill surgeons who have the dedication, expertise and experiences to handle the task.
Thanks for sharing.
God bless.Hi,
I will recommend 2nd opinion by a liver surgeon or specialist to check out the options. Every surgeon is different in their skill,experience and mindset in their decision making process. I am not a doctor,but I met a lot of them in my work place.
Base on what I can extract from your message, both your right and left lobes of the liver are involved; as well as the major blood vessels too. The size is relatively large at 15 cm . CA19-9 >129 is indicative of cholangiocarcinoma (CCA) and your’s is 529. In my experience being around this site and read a lot about this disease; most surgeon will say no in your case. And therefore systemic chemotherapy is the most logical treatment plan for you at this point in general unless you can find a surgeon like Dr. Kato at New York Pres. Hospital who has a history of taking risk to treat patients that were refused by other surgeons. I think you can find someone like him in UK too.
Below is a link for UK cholangiocarcinoma patients and hopefully you can find your answer.
http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/
To your last question, either way is fine. The reason is simple, if your current chemotherapy works and shrink the tumor, it may provide a better chance for resection at the next surgical consult. If the chemotherapy does not work, it won’t make that much difference if your next CT scan is in March or so. I suspect you have this disease way before December ,2010 since CCA is relatively a slow growth tumor.
God bless.Hi,
I do not have ovaries but I am a patient of the same disease for 45 months and I am also a caregiver to my sister-in-law who passed away not long ago of extrahepatic cholangiocarcinoma. From day1 to the last day during the entire 16 months journey,I was her medical person who read all her CT scan reports and labs and suggested questions for her to ask the doctors.
Yes, cholangiocarcinoma can metastasize to the ovaries and the the speed is relatively fast based on the experience that I had with my sis-in-law.since I am not a doctor but just a patient and a past caregiver, I will stop here and let you decide what you should do after you meet with the surgeon. The key question to ask the surgeon is to weight on the benefit of removal the ovaries and related structures against the possibility of spreading the disease because of the surgery. Deep down in my heart, I may have already known what you will choose but you just need the confirmation of the surgeon’s opinion and I think it is smart to do so.
BTW, what was the CEA and CA19-9 level when you FIRST diagnosis as having cholangiocarcinoma?
Good luck and
God bless.
