Hey, I probably have CC. Great to have this board.

[mustangmort]

Thanks, Cathy. That info helps. I do have involvement in lymph nodes even though the tumor in the liver must be small.

[jathy1125]

Mustangmort, Good luck with oncologist Wednesday.
A transplant is only possible if it has not metasized, so it being contained in bile duct is one of the main criteria for transplant. Transplant is a “cure”, it really decreases our reoccurence rate etc.. not a last ditch attempt, so you might want to discuss with oncologist about options for transplant or resection. Our cancer is pretty chemo resistant.
Keep posting and lots of luck!
Lots of prayers-Cathy

[mustangmort]

Thank you so much for your caring, Cathy. I talk with the oncologist on Wednesday and will be asking a whole lot of questions. Maybe I will drop Dr. Chapman’s name. Right now, the surgeon wants to operate after a round of chemo. My liver is not involved majorly yet, so talk of transplant is hopefully way off or with more luck, not at all.

Appreciate the prayers. The more, the better.

[jathy1125]

Welcome mustangmort, and sorry you had to find us! I am a CC survivor, 2 years cancer free!!! I am alive because of a liver transplant (really 2). I was lucky to be diagnosed by one of the top CC doctors, Dr. William Chapman (google him quite impressive) at Barnes-Jewish Hospital in St. Louis MO. I have an amazing story to share, you can read it at the telegraph.com under christmas miracle or my FB page at Catherine Sims Dunnagan. My FB page has mine and another CC transplant survivor story posted on it. Lots of HOPE in these stories.
Transplant is your best option if you can qualify for the trial (main criteria is not to have spread). My CC was inoperable and was told 6-8 months to live with out transplant. There are few centers that believe this is an option. The Mayo and Barnes are 2 of the main with this clinical trial and more are starting to come on board. I would discuss this with a doctor who believes this is an option, and let him rule it out if not an option. I have been told many times that Dr. Chapman will take phone calls. He is more than just an amazing doctor, he has a heart and soul. (Many other postings on this site about him). Barnes-Jewish is listed as Cholangiocarcinoma treatment center. Pleas feel free to call me (618-567-3247) or email me if I can help.
I am alive because of God, two strangers, and Dr. Chapman! (That is exactly how Dr. Chapman would list it also!)
Lots of prayers-Cathy

[mustangmort]

Hope your dad enjoyed Santa Fe. I’m a New Mexico native myself….transplanted to Utah for some time now. I have not had an ERCP. My surgeon said it appeared to be a slow grower. I will ask the surgeon if he would consult with Dr. Kato. With his pedigree, he probably knows him. :0) My wife accompanies me to everything. I will start taking notes from now on. I have a great memory for technical stuff, but who knows for how long I will be remembering things once they start poking and prodding and injecting. I feel extremely fortunate to have “accidentally” found this cancer before it got “older”. I have great faith in Huntsman Cancer. Mr. Huntsman poured a ton of money into bringing some of the best and brightest to Salt Lake City. Thanks again, and again, and I’m sure many more times in the future as I am just getting started on this journey.

[jim-wilde]

mustangmort, my dad lived in Santa Fe, NM for many,many years and understand that a 6.5 hours drive is nothing in the SW and Rockies. BTW, we don’t talk miles here, it’s hours! We just happen to have a number of superb cancer centers in NYC and Balt (NY Presbyterian, Memorial Sloan Kettering in NYC, Johns Hopkins and U of MD Medical Ctr in Balt). I landed at NYP largely due to prior contacts there in cardiology, and in fact my dear cardiologist Dr. Sun Hi Lee acted as our ‘tour guide’ at NYP, a hospital with over 20,000 employees. Dr. Lee was involved in all aspects of my care, including lobbying the surgeon to take me on, given some significant cardiac issues.

I would ask Huntsman Cancer how many cases they see a year. I doubt the major cancer centers see more than 50 to 75 patients a year as new CC patients, given the national total, and maybe fewer. BTW, other cancers don’t count (and are all more numerous). I relied on NYP for my post surgery adjuvant chemo also, although the infusions were local to where I live. All of the post surgical followups, CT’s and PETs have been back to NYC as well. 2.5 years out and still making lots of trips to NYC for followups.

Have you had an ERCP yet? It’s a diagnostic endoscopy and also used to place stents in the case of billiary blockages. It’s often done early on to confirm the nature of the cancer and extent in the bile ducts. Time may not be your friend here. Some cases of cc progress slowly, others very fast. My doctors all assumed it was a fast mover in my case, whether or not that was true.

Do you have an advocate (wife, friend, etc.)? Very helpful to take notes and maybe recall stuff you don’t. We still refer to notes from more than three years ago.

I don’t think NYP and Dr Kato have any charge for a long distance consultation. Many hospitals do charge for such services.

Where someone goes for treatment is a very personal choice. I wish you well again.

[mustangmort]

Thanks, Jim, for your post. I appreciate very much the concern and offered help that everyone gives here. Trust me when I say that “convenience” is not the issue. Heck, eastern Maryland to NYC? To us westerners, that’s just an afternoon stroll. :0) I will certainly have lots of questions for the oncologist in my appointment next Wednesday. I would really like to know how many CC cases are treated here at Huntsman Cancer.

[jim-wilde]

CC is rare, with ~ only 2000 cases per year in the US, so only the major cancer centers have the experience and skill sets necessary to diagnose and treat this horrible disease. I live on the Eastern Shore of MD and traveled to NY Presbyterian in NYC (no where near where I live) for diagnosis and treatment. There were plenty of hospitals and doctors in between, but in my opinion, none had the experience and resources that NY Presbyterian (and several other NYC hospitals) had. I put convenience way down the priority list and don’t regret the choice I made one bit. I had a successful resection in 2009 and so far, am still clean. Additional opinions are almost always a good thing with a possible CC diagnosis. In my case, I had an ERCP done at NY Presbyterian and the doctor (Peter Stevens) had seen enough cases of CC, that he didn’t need to take a biopsy sample (increases risk of spread), knew immediately what the cancer was, and pointed us to Dr. Tomoaki Kato, a brilliant young surgeon. There was never any doubt about the diagnosis or how to proceed, just an assessment of the risks.

All I can suggest is to find the very best care you can find. Good luck and I pray for a good outcome for you.

[marions]

Thanks for informing me about this. Still, I would explore one additional consultation.
All my best wishes,
Marion

[mustangmort]

Thanks Marion. Huntsman Cancer hospital is part of the University of Utah. 17 years ago I had my colon removed at the University of Utah because of 20+ years of Ulcerative Colitis and I was growing polyps like a field of corn.

[marions]

Mustangmort….(love that name) you are not questioning the expertise of Dr. Mulvihill rather, you are confirming the diagnoses. Specialists speak amongst each other and possibly Dr. Mulvihill can confer with one of his colleagues. If not then you might have to pay for a consultation fee which could be anywhere from $250 to $700. (I believe.) Either way, given the difficult diagnoses and history of UC I believe that you would benefit greatly from the assurance that the current diagnosis is correct. Another thought I have is contacting the University of Utah. The had an ongoing liver transplant clinial trial and therefore must have experience with UC patients.
Please, keep us posted. We care.
All my best wishes,
Marion

[gavin]

Hi Mustang,

Welcome to the site. Sorry that you had to find us all, but Im glad that you have joined us here. You have come to the right place for support and help and you will get a ton of that here. I can’t really add too much to what Lainy and Percy have said to you, but I just wanted to stop by here and welcome you to the site. I know that you will have questions, so ask away and we will do what we can to help in answering them. We don’t promise to have all of the answers, but we are here for you and will do what we can to help.

Best wishes,

Gavin

[lainy]

Mustangmort, thank you so very much for clarifying, sounds like you have a who’s who of Doctors and that is great, I will worry no longer. Just when we think we have this CC down pretty pat, someone comes along and presents new “stuff”. It sure does keep us on our toes. Please keep us posted on how you are doing and I wish you the best!

[mustangmort]

I will ask if they have conferred with other cancer centers since my case is presenting very differently and out of normal for CC.

[mustangmort]

I appreciate the concern and suggestions. I will certainly question more but this is it: Have had CT with dye and contrast, CT/PET (showed hot spot in liver), MRI with the liver contrast (did not show any defined tumor), originally had esophogeal ultrasound with biopsy which found the cancer cells in the lymph nodes. The scans just don’t show anything definitive although the doc believes it to be CC. He believes a “small” tumor is blocking 1 biliary branch that is small enough to hide from the scans.
Pathology on cells from lymph nodes showed slow growth. He said there are 2 choices……surgery first or chemo first. He suggested the chemo first to try and knock out any cancer cells that may be lingering elsewhere, then go in and get the tumor/lymph glands.

How in the world do other people go about getting different opinions clear across the country on their own nickle? I have great insurance as long as I stay in state. It’s worthless outside of state.

[Author]

Posts