MY DADDIE :( == hilar cholangiocarinoma
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Percy, you are the best. And thanks. I don’t want to brag but we do have the most phenominal Family. You made me feel so good as sometimes I feel so inadequate since medically I only know what we went through and I know we did it with laughter. What I have learned is, I had some good teachers here. OMGosh speaking of steroids ,these 2 new ones are killin me, Humira, Ucera. Man, to pay 1,000 a month to feel sick and loose hair, I could hire a sadistic fool to beat me up almost for free! Tell your wife I just love her husband, so to speak!
Hi, Lainy,
Thanks for your compliment, but you know without you on this board,there will be no poet to calm our emotion;there will be no companionship among caregivers and patients alike; and there will be no “steroid driven” funny stories to be told. Youare one of a kind that this board cannot afford to be
without.
I just do what I can for the very few of people who seek specific info. But the majority people need you and other members to provide the emotional support that a man like me most of the time cannot understand or provide.
God bless.Hi, Huong-my,
Please keep the appointment with Dr. Chung at Spectrum Downtown this coming wednesday for the discussion and review of his labs/DX. In the meantime, prepare and gather all the CT scan computer disc,radiology and lab reports and start contact the hospital of your choice. You can wait after the Wednesday appointment to do so.
For Wed, appointment; ask the surgeon
1. what other alternative treatment if he says no for surgery(ie: radiation treatment like SBRT and the local oncologist he will recommended)? and why your dad cannot have surgery? is the tumor locate in a difficult area(ie: near major blood vessel) so surgery is not possible? How big (ie: 2cmx3cm)is the tumor and where is located?
2. What stage of cancer your dad is in right now? I,II,II or IV.
3. ask him where he will recommend you for a 2n opinion?
4. If your dad can have surgery, ask him how many cases of liver surgery he has performed last year or so(ie: 8 cases last year_) and ask him to explain what he will do during surgery?(ie: take out the left lobe );the recovery time after surgery(ie; how long needed to stay in hospital).
5. If your dad can have surgery;then tell him/her(the doctor) you will think about the surgery and will call him back.(after you get the second opinion from other hospital).
6. Keep in touch and tell us on this message board what the doctor say afer the Wednesday appointment.In the mean time try to look up the info on this board the stages of the intrahepatic CCA; and choose one of the patient on this message board who had intrahepatic CCA like your father and learn about their experience so you can prepare what to expect.
Finally, knowledge is power and the more you learn about this disease ,the better understanding you will have to help your father. and this web site is one of the place to look for up to date information for this disease.
God bless.Huong-my,
I would like to welcome you to this site and tell you that I am very sorry about your dad. Have you looked into University of Michigan Hospital? We live in Ohio and travel to U of M for my daughter Lauren’s care. They have an excellent cancer center and Lauren has a wonderful oncologist, Mark Zalupski. She also has a brilliant liver surgeon who does many resections and liver transplants named Christopher Sonnenday. She has had the first of a two part liver resection on March 26th after being on chemo for 17 months. She will be having the second part in May. She was always considered unresectable until recently. We could not be happier with the great care she receives from these two doctors. I hope you find a facility where your dad feels comfortable and he gets excellent care.
-Pam
huong-my, my humble opinion is that I would keep the appointment for Wednesday which would give you the time to gather the info needed to start sending out your info to others for opinions. And yes I would also see what Chung says on Wed. Again lots of experience is the key here. Be strong, lots of love and care here and you are not alone!
Huong- my: I have Intrahepatic cholangiocarcenoma with resection Feb 19th at Cleveland Clinic. Took complete right lobe(60%) and gallbladder. Surgery was successful but did have some vascular invasion. My surgeon was Dr. Aucejo and my wife and I loved him. Treated me as a person not just a patient. I live in Syracuse,NY and working with local Onc. CT scan every 3 months and then every 4 months.
Good advice above. Prayers go out to you and your dad!!
huong-my….I agree with Lainy and Percy. Don’t allow defeat to take over. Although physicians try to “guestimate” no one has an expiration date stamped on his/her feet. Searching out an opinion from a physician “very” familiar with this disease is a must.
Please know that medical records have to be released to the patient. Therefore request everything and anything pertaining to your Dad’s diagnoses from the hospital and the physicians involved. (This includes doctor’s notes.)
You then would want to find out about insurance coverage for second opinions. The odds are that the expert is outside the insurance plan list of doctors.
Some physicians have been mentioned already; hopefully others will come along and share with you the names of their doctors also.
Take a breath and catch your bearings – much more information has to be obtained.
Hugs,
MarionHi, PCL and everyone that reply, thanks so much for yours response, I live in Grand rapids, Michigan. My dad has an appointment with Dr. Chung at Spectrum Downtown this coming wednesday for the discussion and review of his labs/DX. Should I wait to see how he is and what he have to say about my dad condition before deciding to transfer my dad somewhere else.. Yes, I’m suspecting also b/c Dr. Chung is the only dr in the area that are able to do this surgery– I am scare and worried b/c I do want to fasten the process before his condition become mestasisize
Dear Percy, that other people just showed up to help and that is why we LOVE you! Thank you so much.
Hi,
May I ask what state you are living in now so I can lend you a hand in recommending a hospital for you.
Even if the doctor from spectrum will operate on your father,it does not mean your dad getting the best treatment. The liver surgery of cholangiocarcinoma (CCA) required liver specialist to perform the operation . Mayo clinic Dr. Gores and his peers, New york Columbus/Pres. hospital Dr. Keto and his associates;Sloan-Kettering in New York, Dr.Brems at Sherman Hospital in Elgin/Chicago and Washington University in St. Louise and UCSF or USC in California are the choices on the west coast.
Surgery,radiation and oncology are the three arms of a triangle that you have to seek help for each specialty before the best decision can be made.
I am a patient and not a doctor,but i can tell you I am still alive after liver resection for almost 48 months now and I am doing well. So here is my suggestion:
1. Calm down first and knowing that it is not the end;every patient is different in response to treatment and the prediction of “how long a patient can live” are not apply to everyone and I am one of the example of that false statement.
2. Choose one of the above hospital and call or email them to start the process the sooner the better;tell the people who answer your call that you want a 2nd opinion on surgery of the liver and need to see a liver specialist or surgeon to check out whether surgery is still an option for your dad., a 2nd opinion on radiation treatment if surgery is not possible and finally a 2nd opinion on medical oncology to start chemotherapy or clinical trial(in that order if you can) .
Other people will come soon to give you emotional support and comfort you better than I could.
God bless.huong-my, welcome to our remarkable family, so sorry you have to be here. I know that when you are first given CC as a DX it is like getting hit in the stomach with a baseball bat! But, I promise you that when a game plan is put into play the fright turns to fight! I can only imagine how hard it was to tell your dad. We DO NOT listen to time frames as we were not born with expiration dates on our feet! We have had members given shorter time frames and they are still with us, some after 10 years. Everybody is so different with this strange CC. I have never heard of Karmanos cancer center Personally I would never go to a Hospital where there is only 1 CC ONC. That means they do not see many CC patients. Mayo Clinic treats a lot of CC patients and there are other Hospitals who treat a lot but are further away. John Hopkins, Sloan Kettering and NY Presbyterian. Usually a tumor that has not Met beyond is resectable depending where it sits on the liver. First I would collect copies of all his LABS and tests and pick another Hospital or 2 and FAX everything to another Hospital. I know it all seems overwhelming right now but others will come along here with more suggestions and this is a great place to start. Wishing you the best and watch for more help coming soon.
My senses are mixed with reality and dreaming– feel like in a coma- after my dads is diagnosed of this cancer, in another term “intrahepatic bile duct cancer” just last week thursday of (04/19)—> I recall the Dr. waiting for me to translate to my dad since my father barely speak english at all. I was shaking heavily, nervous and afraid and translating to my dad had never been so hard, holding my tears and hiding the fact he only have 6 more months if the resection are not possible and even if they can get the tumor out it is only 10% of success rate. I”m still in a dream right now and search here for some comfort, some knowledge and understanding of how to go from here, I hope to get some good advice and guidance about my dads road from here, what is the best Dr and hospital and treatment for him? The Dr said that he will be transferred down to spectrum where there is only one dr in the area that can help my dad with this cancer (resect the tumor) and only with 10% success rate and if the Dr accept this challenge since the tumor is intrahepatic so it will be too deep into the liver. I read somewhere that mayoclinic and karmanos cancer center in detroit, MI are two great hospital specialist in this bile duct cancer. I’m looking for some guidance/alternatives if the Dr. at spectrum refuse to dissect the tumor out, what should I do??? I’m scare to think of that and since his tumor is not metasis, is that good enough for the resect to take place?? n is it true only 6 months? and if the surgery is possible and after that, how long in average how long does he have to be with us family stilll.. please give me some guidance and comfort, i’m going crazy and can’t focus to study, finals are coming up and my rotation is starting soon.
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