Dac with CC
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John, there are several hospitals in NYC that have lots of cc experience. I was diagnosed and treated at NY Presbyterian several years ago with a resection done by Dr. Tomoaki Kato. I know he would give an honest opinion regarding your Dad’s diagnosis. Memorial Sloan Kettering and Mt. Sinai also offer excellent CC services. As pointed out, this is not always easy to diagnose, and you don’t want an unclear diagnosis, because treatment can’t correctly begin until it’s clear what is being treated. Morristown Memorial is a great hospital, but I’m not so sure for cc. During my cc adventure I was a patient with cardiac issues at Morristown, prior to being transferred to NY Presbyterian.
I’d be happy to discuss my experience with NY Presbyterian with you. Just shoot me an email if you’d like to talk.
Good luck.
Hi John and thanks for the good news bad news day. You are so right calling this very frustrating as we also refer to CC as a roller coaster ride. I am definitely for the 3rd opinion and don’t understand treatment without knowing for sure. Honestly, though no matter the outcome there is always relief to tag it for sure as then a game plan is put in to place. Hoping Dad comes home very soon and happy that he is feeling a lot better!
Hi John,
Thanks for letting us know how your dad is doing. I am happy to hear that his stent exchange went well and hopefully the new stent will continue to do it’s job. When my dad had the jaundice and the itching badly, the relief he felt when his metal stent started working was enormous.
I agree with your suggestion about getting another opinion for your dad, and if you choose to, you can get more than just one extra opinion if your dad wants to. The hospital that your dad is in now hae done a good job with your dads jaundice etc, but have they had the experience in treating patients with CC, or even diagnosing patients with CC? CC is tricky to diagnose, and my dads doctors took 3 and a half weeks to fully make their diagnosis of inoperable CC for my dad, and his GI specialist has had a lot of experience in dealing with CC.
As to your dads current doctors wanting to start some type of radiation treatment right now, I have no experience of this and hopefully someone else will be able to offer more thoughts on this than I. But if it was me, then I think I would want my dad to get another opinion before this treatment started. Hopefully others will also chime in with their thoughts here as well.
Thats is great that your dad is feeling good today, or is that yesterday. These good days are so good and yes, my dad would tell me all of his stories when he was having his good days. And like you, I had heard them all a load of times but it was always good to hear them again! When you talk about the bad news being an inconclusive diagnosis, I know what you mean. The not knowing and the waiting around gets to us all, but I know that you will feel better once you know exactly what is happening and then you can both start fighting back. I hope you manged to get some sleep last night and that today is another good day for your dad. Please lets us know how you and your dad are doing.
My best wishes to you and your dad,
Gavin
Hi John, So glad your dad is doing so much better. We just had someone on this site who was diagnosed with Mirizzi syndrome when they first thought it was cc. Apparently it mimics cc. Worth looking into since they can’t confirm that it is cancerous at this time. Wishing you all the best. Nancy
PS – when I meant “bad new”, I meant in the inconclusive diagonsis. Not knowing for sure is what I meant by the bad news. And yes, the news could be worse, so lets hope that’s as bad as it gets.
I re-read my post above and wanted to clarify this as my wording did not read as I meant it.
Long day, time for bed and think and write more cleary tomorrow.
Hi Again,
Well some good news first. My dad had his stent replaced, they removed the old one and replaced with another plastic stent. That seemed to help alot. It took a few days but his heart functions are better, his jaundice is nearly gone, they had him on anti-b and that seems to have done the trick on his bacteria in the blood, kidneys back to normal.
He’s at Morristown Hosptial, NJ so I’ll give them credit for getting him from bad shape when he checked in a week ago to almost ready to go home.
Now the bad news, after doing scans, ERPC, they still can’t confirm 100% if it’s cancer/CC. They told us the test results were “abnormal”. When I questioned what this means, they said while they can’t confirm it’s cancer yet, everthing points to cancer.
They did another ERPC today, doc said he did not see any tumors, lymph nodes were a bit enlarged so he got a sample of a node for testing. Should have the test results in about 2 days they said.
Due to his condition, mostly heart issues, docs don’t want to do any evasive stuff for a biopsy. They kind of said if these test results are also inconclusive, they may want to start radiation. This part has me confused & concerned, starting rad treatments based on “we think”??? I did not know what belirubin, and all this other stuff was until about a week ago, man is this overwhelming and frustrating! Anyone have any comments on this part?
I’m suggesting to my dad he consider getting a 3rd opinion at Sloan, we’ll wait and see what the test results look like but that’s what I’m leaning towards. Doc’s at Morristown Hospital have mostly been great imo but I like the idea of multipule opinions.
Dad was looking good today, told me some stories about growing up in the 1930’s. I’ve heard them before but they are always a kick to hear.
Thanks all for the kind words and support, this is a great site and has helped me. I’ll continue the updates, maybe I can help someone too.
May all that try to help one day receive the help they need too,
johnHi John,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your dad. But you have come to the right place for support and you will get a ton of it here. Also, you will find a lot of information here from the members and if you have any questions then please just ask and we will all do what we can to help in answering them.
From what you have said, it sounds like your dad is up for this fight and that he has a very positive attitude as well. This is very good to hear as that will carry him far. I cam here back in 2008 when my dad was diagnosed with inoperable CC and it was the best thing that I could have done, and I am glad that you have came here as well. My dad had a metal stent placed and that helped him a lot, and it also made him feel so much better once the bile started to flow again. Did your dad get a metal or a plastic stent inserted?
In addition to the link that Marion gave you, this one may be of use to you as well.
http://www.cholangiocarcinoma.org/majorcancercenters.htm
We are all here for you and please keep us updated on how your dad is doing.
My best wishes to you and your dad,
Gavin
Dear John – So sorry for this difficulty in your life and your dad’s life. Attitude is so important. We often say to enjoy the good days, say all the things you need to say and hold on tight on the bad days. Make as many more happy memories as you can because no one knows the future. We care about this walk that you are on and we will be here to listen, to care, and to share. Blessings, Susan
Hello John and a very warm welcome. I think that you said it all in that your Dad is fighting this disease with all his might. Regarding age: It had been discussed at one of the medical symposiums I had attended that age should not be considered if the patient is healthy enough to undergo treatments. Therefore, if your Dad is ready to give it his all then the physicians will work with him. A few things to keep in mind:
1. Second, and possibly more expert opinions.
2. Make sure to receive copies of all medical records including, CT scans, blood tests, physician’s report, etc. Everything and anything pertaining to your Dad’s diagnoses must be obtained.
3. Searching out those physicians most familiar with this disease. This member established link might be of help to you;
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
4. Stay positive. There is no expiration dates stamped on anyone.
5. Please, reach out to the members on this site. Everyone is really helpful and will do anything possible to help you through the maze of knowledge coming your way.
6. Arm yourself with knowledge as it will empower you to make informed decisions.
All my best wishes,
MarionDear John, welcome to our wonderful family but sorry you had to join us. What a wonderful man your Father must be. He figues if he made it through WWII he can make it through anything, that’s a great attitude. With a War, it’s easier to fight when you can see what you are fighting. With CC you are fighting blindly. What kind of prognosis have the Doctors come up with? Where is Dad being treated? Please keep us posted, we care. I have a strong feeling that CC does not know the man it has come up against!
Hi all,
My dad made it through WWII without a scratch by now gets hit with CC. We just found out, trying to understand what his options are, but at his age it’s not looking too good.
He’s been in the hospital for a few days now, they had to stent his bile duct, that seems to have helped. I should be happy he got to at least see some of his grandkids grow up a bit. He’s not giving up though, doctors asked him how aggresive he wants to be and he told them “go fulll guns!” That’s why they call his generation the “greatest generation”.This sucks! Good bless all going through this with a loved one.
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