1 (edited by lizzycf Sat, 20 Jul 2013 21:36:08)

Topic: New member

Hi, my name is Lizzy. My 56 year old Dad was diagnosed cholangiocarcinoma (distal bile duct carcinoma) at the end of May. I am living in CA but my parents are from Beijing, China. He had all treatments in Beijing.

I have been reading posts several days and get so much valuable knowledge and information. I wish to get your advice and help regarding my dad's post-surgery treatments. Thanks in advance!

Here is the treatments my Dad has received by far:
06/04: Whipple surgery
06/21: Discharge home with one abdominal drainage tube
06/26: One-day fever
06/26-07/02: Inpatient, diminish inflammation, blood test, CT scan
07/03: Remove the abdominal drainage tube
07/19: Blood test, all tumor marker indicators (AFP, CEA, CA199, CA125, CA153) are in standard range, except the Ferr is relatively high (577.32).
07/19-now: Inject thymopentin

Pathology (personal translation):
Distal bile duct poorly differentiated adenocarcinoma, 2*1*0.6 cm. Cancerous tissues invade throughout the bile duct wall layers, perineural invasion, invade surrounding pancreatic tissues, not involved duodenum. No cancer at duodenum incised margin, pancreas incised margin, common bile duct incised margin. Common bile duct cut edge epithelial displays adenomatous hyperplasia along with medium-severe atypical hyperplasia. No cancer metastasis at peripancreatic and peribilliary lymph nodes (respectively 0/1 & 0/2). 

Our surgeon strongly recommends us to visit an oncologist so as to receive chemotherapy. I have consulted with two specialists. One advised to take chemo & radiotherapy together. Another specialist thinks cholanglocarcinoma is not sensitive to chemotherapy and there is no need to take radiotherapy either. So, we are very confused by their suggestion. We are wondering is it necessary to take chemo or radio or both therapies? Is it efficient to take the treatments after surgery?

Besides, I have red some academic articles both from Chinese and US journals. It is said the 5-year prognosis of poorly differentiated is 0. It is so horrible, scared, desperate, and hopeless! Anyone knows any exception? We look forward to a miracle!

So many questions! Thanks for any response!

2 (edited by PCL1029 Sat, 20 Jul 2013 23:55:18)

Re: New member

Hi.

Please note: I am only a patient and not a doctor.

According to NCCN guidelines: (American national comprehensive cancer network):
Extra hepatic CCA:( ECCA)
. For patients with resected,margin-negative ECCA with negative regional nodes, observation,fluoropyrimidine or gemcitabine based chemotherapy or fluropyrimidine based chemo radiotherapy are acceptable options.

According to (ESMO),the Europe Society of Medical Oncology:
. For both intra and extra hepatic CCA, suggest supportive care or palliative chemotherapy  and/ or radiotherapy after a noncurrative resection, and consideration of postoperative chemo radiotherapy as an option after complete surgical resection.

So if I were your dad, since he is by all standard is relative young, and if he does not have other health problems like diabetes or fast heart beat( A Fib) and he has the distal kind of CCA which recurrence is the lowest among other form of CCA( 50%) I will suggest to follow the NCCN or the ESMO   guidelines to have adjuvant chemoradiation as indicated. And follow your dad's surgeon suggestion . It will  provide  a 10-15% chance for decreasing the chance of recurrence in the future.
But it is not a guarantee either.
But for sure, this will be a life changing event that no one wants, but the key is to keep uptodate knowledge about this disease ,CT Scan every3-6month, and try to catch the recurrence earlier enough to allow more treatment option rather than only chemotherapy.
Will your dad be treated here in the States in the future?
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.

Re: New member

Liz...welcome to our site.  Our Eli posted on the subject of adjuvant therapy recently:
http://www.cholangiocarcinoma.org/punbb … 483#p77483
You might also want to consult with a 3rd or 4th specialist, as the opinions vary.  And, yes, dear Liz, miracles do happen - we don't ever count it out.  I am sure for others to come around real soon and share their thoughts with you.
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: New member

Welcome Lizzy to our remarkable family but sorry you had to find us. Glad your husband went through the Whipple as well as he did. My Teddy was 73 and it bought him 5 1/2 years. He had clear margins and no mets. 5 DOCS (ONC, Radiation etc) said no to Chemo but that was 8 years ago and some things have changed. They felt because of his age and that everything was clean he didn't need it. It returned 3 years later where his Duodenum used to be and he had radiation and Cyber Knife. That bought him 2 more years. About mid way through his 5th year it returned again to the same place and there was no more they could do. The ONC told him he had about 6 months and asked him if he wanted Palliative Chemo and he asked the ONC, "IF I have the Palliative Chemo how much time will it buy me?" The ONC said another month. Teddy thought about it for 3 days and decided no, he rather have quality time. This is one of the hardest decisions a patient has to make.
I know it must be very hard to have Dad across the world. I go along with Marion that you might want a 3rd opinion to see which one of the other 2 the 3rd one agrees with. Wishing you all the best of luck and just know that the decision Dad makes is the right one for him! Be strong and please keep us posted as we truly care.

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: New member

Hi Lizzy,

Welcome to the site. Sorry to hear about your dad and what he is going through right now but glad that you've joined us all here as you are definitely in the best place for support and help, and I so know that you will get loads of each from everyone here. I am glad that your dad was a candidate to have the whipples as so many people are not able to have surgery of any type with this cancer. My dads was deemed inoperable from diagnosis.

I hope that your dads recovery from the whipples goes smoothly and please let us know how that goes. I know that you will have questions about everything so please do not be afraid to ask them and we'll do our best to help in answering them for you. And I know that your head will be spinning too with everything that is going on right now with your dad. That is common and we can all so appreciate how you feel at the moment having been there ourselves.

Please do not give up hope Lizzy. We have many many great stories here on the site and you will see that from reading here. Keep on learning as much as you can as the better informed you become the better you will be able to help your dad. I know that it must be so tough for you being so far away from your dad right now, but keep coming back here as we are all here for you. Stay strong Lizzy and do not give up hope.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member

Hi PCL1029, thanks very much for your advice. I will carefully read the NCCA guidline. We plan to take blood test monthly and CT/MRI each 3 month.

My dad doesn't have US insurance, and our insurance couldn't cover him either. I am afraid no agent will accept him (I am not very familiar with US medical system). I am trying to consulte with a US oncologist, but the Stanford center doesn't accept my request. Still look for other agencies.

Re: New member

Hi Marions, I have downloaded that file and going to read it right now. Many thanks!

Re: New member

Hi,
Actually China, Japan and Taiwan have the most  combined population of cholangiocarcinoma patients and all theses countries are very upto the tasks to treat CCA. I am not sure about the Chinese research on this subject, but the Japanese are on par or even better in CCA research and proposals to treat this disease . So I do not think it is necessary to come here for treatment.BTW, the risk factor of your father CCA may be different than patient here in America and Europe. Here, in the States, without health insurance, most likely I will be dead by now or my retirement saving would be  long gone after the three resections that I had.  It does not worth the expenses. I know I have a couple patients whi did want to come here for treatment from China,since they can afford the expenses.
It seems to me that you are very good in English if you translate the pathology report by yourself to English.May I ask what professional fields you are in?
Please be sure to understand this is a difficult disease having a lot of ups and downs just be prepare and pray hard.
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.

Re: New member

Hi Lizzy, I just want to say that what they are doing for your Dad now was the same as they did for Teddy. Every 3 months he had LABS and an ONC visit. Then 2 X a year he had PET Scans. Looks like it's not different than your Dad's follow up after the Whipple. Hang in and be strong.

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: New member

Hi Lainy, your Teddy is my Dad's example! We will keep observing and look for advice from other oncologists for next step treatments. Bless us!

Re: New member

Hi Gavin, thanks for your encouragement. I think my Dad recovers well so far. His appetite is getting better and has gained a couple of pounds after being discharged home. We will take close surveillance on him and look for other oncologists' advice. I will update Dad's conditions.

Re: New member

Hi PCL1029, I translate the pathology by myself. My professional field is in higher education. I feel China has some very good surgeons and physicians. Especially, they have a lot cases and experience.