January 22, 2010 at 10:51 am #34894lalupesParticipant
Good luck getting the appointment brought forward, Jen & Lu. I join the others in welcoming you here. The waiting, waiting, waiting is so hard but this site is a brilliant place to come for support & understanding.
JuliaJanuary 21, 2010 at 9:43 pm #34893devoncatParticipant
I have, but for the life of me I cant remember who had him for a doctor. Try using the search function at the top of the forum, but hopefully someone will come around and give you the scoop.
KrisJanuary 21, 2010 at 9:30 pm #34892jen04Member
Thank you to everyone who has responded to our post. I will keep trying to get an earlier appointment for my father. Although when I called Dr. Gold they didn’t have openings until Feb 5th which is basically the weekend before his next appointment. Has anyone heard of Dr. Kaplan?
Positive thoughts to all!January 21, 2010 at 5:29 pm #34891gavinModerator
Welcome to the site, although I am sorry that you have to be here. Please come back often and post/ask loads of questions as you will get a ton of help and support. I know what you mean about being in shock after the diagnosis, I went through that with my dad also. But that will pass and then you will come out fighting. Please stay positive.
My best wishes to you and your family.
GavinJanuary 21, 2010 at 2:11 pm #34890walkMemberLu2 wrote:we were sent to the wrong surgeon, specialized in pacreatic cancer and lower liver.
new GI guy does not perform major invasive surgeries but endoscopic procedures. He will do the endoscopic ultrasound in 3 weeks why Jen04 is not happy. He will refer us if dad is a surgical candidate.
We were originally told based on tumor band location he was most likely not a candidate for surgery.
Or, if this is as close as we get to a diagnosis, we should proceed with the oncologist? We have one of the best in the State lined up?! We have no treatment plan and time seems to be our biggest enemy right now!
You have been dealing with a lot! In order of the paragraphs above;
Big red flag to me that you were sent to the wrong surgeon
New GI guy sounds like he is wasting your time. One, he can’t perform the surgery your dad may need and two, you’re waiting 3 weeks.
It may be that location prohibits surgery, but you are wasting valuable time. Many treatments are subject to the patients bilirubin level and they can increase rapidly. you don’t need to panic, but you don’t have time to dally either.
Definitely proceed with the oncologist. He should be able to connect you with surgeons or interventional radiologists as necessary. You will know once you get the right doctor, at least for us, appts and tests, etc. proceeded quickly then.
Please feel free to send me an email if you like. I am on the east coast, so I am no help with doctors in you area, but Lord knows I had my frustrations with an inept oncologist.January 21, 2010 at 1:50 pm #34889lainyParticipant
Hello Kristin and welcome to our Family. Sounds like your step-dad got a quick response from DX to chemo and that is just the way it should be. I don’t feel it should take weeks and weeks if you are with the right doctor, one that knows what he/she is doing and has treated many others with CC.
My husband found out on a Friday and the next Friday was having his surgery.
With that said, you will find that the more you read up, the more you learn, the fright becomes less and you become a great advocate in this fight.
I might also suggest that you re-post under Introductions as this one could get lost in here. Then I am sure you will be receiving lots of advise and responses. I have not heard about the Block Center but if you go to our search at the top of the page and type in Block Center, you may get some answers. Sorry you had to find us but you will be glad you did.January 21, 2010 at 7:35 am #34888marionsModerator
Hello Kristin and a very warm welcome. We also had looked in to the Block Center however, my husband choose to stay local mainly, due to the inconvenience of traveling. I don’t recall any of our members discussing the treatments at the Block Center however; hopefully someone will come forward and share his/her experience. I don’t think that anyone is prepared for a diagnosis of Cholangiocarcinoma let alone know of this disease until it touches our life. I strongly believe that knowledge is power and I congratulate you on reaching out and searching for information. Certainly, you have come to the right place. The members on this board are so most incredible, caring, helpful, compassionate, supportive people I have ever had the fortune of meeting. Also, please, take the time to peruse this board, as there is a wealth of information hidden in the threads. I am glad that you have found us and please, keep us posted on any new developments coming your way.
Best wishes to you and your family,
MarionJanuary 21, 2010 at 5:33 am #34887kristintcParticipant
Hi-I just found this site and so happy to know this is some info out there. My step dad who is 71 was just diagnosed with CC about two weeks ago and so trying to find out as much as possible. But…I live in California and he is in Chicago. He is already undergoing chemotherapy at Loyola and will be going to the Block Center for Integrative Cancer Treatment in Evanston next week for a consultation and to meet with a dietician. Does anyone out here know about the Block Center? Also, my entire family is in shock so I don’t think anyone has really gone searching online just yet…thank you!January 21, 2010 at 5:29 am #34886marionsModerator
Jen…several of our members had been seen by Dr. Gold at the Swedish Cancer Institute. Here is his info: 1221 Madison Street
Seattle, WA 98104-3588
Hopefully, you are able to receive an earlier appointment.
MarionJanuary 21, 2010 at 1:31 am #34885mlepp0416Participant
Jen and Lu:
Welcome to the site, you will find a lot of answers here but no one truely wants to be a member of this site.
In my husband Tom’s case, we dealt with the Veterans Hopsital in Iron Mountain. The first indication that there was something wrong was based on blood tests were his Alk Phophaste was 10 times normal. All they wanted him to do was discontinue some meds, then come back in a week for more blood tests, then use a special diet, then come back in a week for more blood tests…after about 4 weeks of that garbage, I took matters into my own hands and go into a civilian doctor and within 2 days an ERCP was scheduled, they could not get through the blocked bile duct, so the next day they introduced a wire from the chest wall and via the ERCP there were able to stent the site of the original tumor, they did a brushing of the bile duct where cancer cells were found and they immediately identified it as CC. That was in April of 2008. Tom was a candiate for surgery based on where the tumor was (Left lobe of liver about 1 1/2 CM from the junction between the left and right biliary tree. His original tumor was about 1.5 CM. Tom had a successful resection but had a tumor reoccurance in November 2009 in the remaining right biliary tree.
mlepp0416 is my login name and you can read Tom’s story on this site.
With this type of cancer, a good pathologist should be able to determine what type of cancer cells your dad has. You need to ask any and all questions you have. Prior to Tom’s surgery I walked into the surgeons office with my list of questions wrote down and we did not leave that surgeons office until he’d answered every question! There is no such thing as a dumb question when dealing with this type cancer.
If you don’t like the way the doctor answers those questions, then seek a second opinoin. The first doctor had only done less than 20 liver resections in a 20 year period. I did not put my husbands life in that doctors hands needless to say. We ended up going with a VA doctor that had just transferred to the VA Hospital in Milwaukee Wisconsin. She’d done hundreds of liver resections and liver transplants when she was at Froedert Hospital in Milwaukee. She took all the time necessary to explain the surgery to us, the recovery time, with no complications, the recovery time with complications. She drew up diagrams to show us where the cancer was, how she planned to cut, etc. She gave as “Warm Fuzzies” and we were very confident in her ability to get Tom through surgery successfully.
Prior to meeting with the surgeon, I was on the computer for hours looking at anything and everything I could find on this type of cancer. As questions came to mind, I’d write them down. I still do that today based on Tom’s reocurrance and now his radiation.
Given that CC is a rare cancer and there are many doctors/oncologists who never see this type cancer, it is not unusual that it’s taking weeks to get a proper diagnosis. Good luck to your dad, prayers from Wisconsin coming his way.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretJanuary 21, 2010 at 12:19 am #34884ashleyParticipant
If your dad does have a Klatskin tumor, if is under a certain size and has not metasticized to other areas he may very well be a transplant candidate. ( correct that the location of a Klatskin most likely means no surgery because it is where the bile duct splits) Mayo, U of Nebraska and U of Utah are a few places that offer this protocol. there may be other locations closer to you. Please consider this as an option. There is an informative on the protocal that marion ( I think) put out here last week.
Keep us posted
ashleyJanuary 21, 2010 at 12:12 am #34883lainyParticipant
My best to tell you is what I wrote above to Jen. Use our search button to locate a good ONC in Seattle or a good Cancer clinic. All this time is time wasted. It sounds like these doctors do not know zip about CC. Jan 2 to now and with his tests is enough time for a DX and a game plan. Can you gather all his paper work and see an Oncology Surgeon? His Primary Doctor can get him a referral. Make a list of questions, it’s your right. The very fact that they are not going to do anything until in to February is astounding. Sorry if I sound clipped, but I am very upset for you with these doctors. When my husband jaundiced he was DX and had surgery in a 2 week time. An MRI or a CT Scan is good or a PET Scan. They certainly are NOT done with a DX.January 20, 2010 at 11:52 pm #34882gavinModerator
Hi Jen and Lu,
Welcome to the site, although I am sorry that you both have to be here. Please come back often as you will get a load of support and help from all of us here.
In my dads case, the first thing we noticed was the jaundice showing up in his eyes and his local GP refered him up to the hospital here. At hospital, he was seen by a specialist who carried out all the tests, ultrasound, CT scan etc and he spent about 3 weeks or so in there before they diagnosed dad with CC and came up with a treatment plan.
I know what you mean about how shocking this all feels. My dad was the same as your dad before diagnosis in that he had no serious health problems apart from colds etc. I can’t help you with regard to doctors in Seattle, as I live in Scotland. But If you feel that your dads doctors arn’t doing enough or are not giving you some answers, then perhaps it may be a good idea to get a second opinion from a doctor who is more experienced in treating CC?
Walk makes a great point in that all of the things regarding your dads situation should be explained to you so you all know what you are facing. In my dads case, his CC was deemed inoperable and the specialist explained and showed to us why from the scan results.
My best wishes to the two of you and to your dad,
GavinJanuary 20, 2010 at 11:34 pm #34881lu2Participant
Well I saw my dad on the 2nd of Jan took one look at him and marched him down to the local ER. He was jaundiced and rather glowing. He developed diabetes too! The man had a physical 5 weeks earlier nothing out of the norm except he was asked to lose some weight. (He has now lost 48 lbs. in 8 weeks.) They originally thought it was HEP A, then the ultrasound revealed a blockage, thought it was a stone, realized it was a tumor band, realized he presented with classic CC. Did an ERCP and brush biopsy both negative, Then they did the CAT scan, we were sent to the wrong surgeon, specialized in pacreatic cancer and lower liver. Dad is presenting as Klatsky sp? or outer hepatic tumor band affecting the left bile duct past the junction hence, the jaundice. The stent was placed on the right main bile duct…,new GI guy does not perform major invasive surgeries but endoscopic procedures. He will do the endoscopic ultrasound in 3 weeks why Jen04 is not happy. He will refer us if dad is a surgical candidate. We were originally told based on tumor band location he was most likely not a candidate for surgery. We still truly don’t know. Yesterday the new doctor mentioned for the first time enlarged lymph nodes…I went over all the medical records I have and no indication that this was an issue. Obviously with cancer it is…but nothing mentioned specifically! We have great cancer centers and doctors here in Seattle we just need someone to tell us it is cancer…Or, if this is as close as we get to a diagnosis, we should proceed with the oncologist? We have one of the best in the State lined up?! We have no treatment plan and time seems to be our biggest enemy right now! JEn04 and I feel just as informed as any of the providers my dad has seen so any thoughts???!!!January 20, 2010 at 11:21 pm #34880walkMember
Is it an issue of distinguishing between cholangiocarcinoma and hepatocellular? If so, in my father’s case, they never made a determination even with a laprascopic biopsy. Otherwise, my .02 is to find another doctor; in my opinion those are early warning signs of either a poorly run practice or inexperience.
Some of this should have come with explanation, like why isn’t he a candidate for surgery? Is it tumor size or tumor location?
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