Dad diagnosed
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Hello Bob….in addition to the information given to you by our great members I would also like to mention the external links on our website. You will find it by opening the Discussion board, scroll down to “Websites.”
Best of luck,
MarionHi Bob,
A warm welcome from North Carolina! Here are a couple of links with questions you might want to ask about cancer:
http://www.oncologychannel.com/questions.shtml
http://www.cancer.org/docroot/ETO/content/ETO_1_9x_General_Cancer_Questions_to_Ask.pdf.asp
http://www.cancersurvivors.org/Resources/questions.htm
These are good sites that may be helpful to you.
Please come back here often and know you and your family are not alone on this journey. We are all here for you.
Hugs!
PamBob,
Once my husband was diagnosed, I think it took us at least 3 weeks to realize what cc meant. We went to our first appointment with a list of questions but our number 1 question was what options are avaliable. Then we started researching, had a second opinion and decided on a resection. Unfortunately they were not able to do the resection and knew Chemo was the only option other than doing nothing which was not an option for us. I have those questions if you would like I will be glad to email them to you, but honestly during our conversations with our doctor we came up with many more questions and still come up with them. I will tell you I have visited this site many times in the past year but just joined last month and the information and advise you get here is THE BEST.
Good Luck and you are in our prayers.
Hi Bob,
Welcome to our world — nobody wants to be here, but our residents are the most kindly and friendly you will find.
SOrry about that long battle to get a diagnosis — CC is like that; typically very hard to diagnose.
I am sure folks will have suggestions for questions, so I will just briefly toss in my two cents.
First, please get a second opinion, no matter what this doc offers, promises, orotherwise tells you. Docs, like the rest of us, have subjective feelings and they do come through some times. And ultimately, if you talk to two docs and they to see things in the same way, it is a comfort.
Obviously you want to know of potential for surgery, radiation, and/or chemo. Chemo has a bad track record with CC, but many folks feel like it is still worth a try. Those are personal, quality of life decisions we all have to make.
I would also ask to get involved with a palliative doc early on. These docs are not just focused on end of life; they are concerned with quality of life. I wish I had agreed to see the palliative care people much earlier than I did.
I;m sure others will offer more advice.
We’re thinking of you and your family.
Take good care.
Irene
Thank you all for the kind responses. The latest word is that there appears to be a malignancy of some sort in the right bile duct just before it joins to become the main bile duct. The doc did manage to place a stent in that duct.
Biopsy results are due Tuesday and then hopefully a definitive plan of action will also happen. My parents seem to be struggling a bit with getting a grasp on the whiole thing. I believe they are still almost in a denial state of mind, but it’s letting them rest peacefully for now, so that’s not all bad.
I have to admit I had never heard of CC before this and am so happy to have found this website.
I’m researching like mad, but was wondering if there is a common set of questions that might be good to ask the docs? Any help is greatly appreciated.
I’m kind of doing this long distance. They’re in Indiana and I live in Arizona, but I expect to be making a trip back east very soon.
Thx
Bob
Hi Bob,
Welcome to the site although I am sorry that you have to be here. I can’t really add anything to what the others have said regarding the tumour location, but just wanted to join in with them in welcoming you here. I hope that you will keep coming back here as you will get a ton of support and help from all of us. And please ask any and all questions that you will have and I am certain that you will get answers from someone.
My dad was diagnosed in summer of 2008 and like your dad, they thought it might be gall bladders issues, then it might be this or it might be that before finally he was diagnosed with inoperable CC. As Amy says, this is a tricky disease to diagnose and I agree also with what Margaret says about finding out as much as you can regarding CC and making a list of questions to ask your dads doctor.
I am sorry that you had to find us, but I am glad that you are here. Please keep us up to date on your dad.
My best wishes to you and your dad,
Gavin
Hi Bob,
Sorry that your father had a few false starts. This is a tricky disease to diagnoses. My mom went to the IU Med Center. We had some fabulous drs there. Dr Attila Nakeeb did her surgery in 2006. Romnee Clark was her chemo oncologist. Higinia Cardenes was her radiation oncologist. We were very happy with all of them.
Amy
Hi Bob:
Welcome and so sorry that you have to be here. I will keep your father in my prayers. If you have read the posts on this site, you will find that there are many different paths, twists and turns with this type of cancer. My husband Tom was diagnosed in Mar ’08 and is continuing to fight the battle. He was given a 6 month prognosis in December ’09. That 6 month mark is fast approaching, but he has undergone radiation and is currently on chemo and we are hoping to beat the 6 months.Depending on where the tumor is means a lot. In Tom’s first occurance the tumor was in the left lobe of the liver, about 2cm above where the common bile ducts splits to go into the left lobe – therefore he was able to undergo a left hepatoctomy (sp?) or a liver resection, meaning that they were able to remove the left lobe of the liver. That was done in June ’08.
With his reoccurance of a new tumor, the tumor is in the main bile duct (above the common bile duct) and it involves the arterty that feeds the liver, therefore it is inoperable. (the luck of the draw eh?) Based upon the location, his only option was radiation and chemo. Right now, the tumor is dead (or dying) and his main problem is that the tumor is still blocking the duct and he has an external drain to draw off the excess bile so that his color is not as yellow.
We are currently waiting to get the remainder of his cholangiograms and Ercp films to arrive at Mayo so the Interventional Radiologist can decide if he can possibly get the internal stent placed based on those pictures. We should know for certain if they will attempt in again within the next few weeks.
My advice is to read all you can on this disease and write down all your questions, no question is a dumb question. In fact, while we were at Mayo, Tom’s liver specialist asked me if I were a doctor based on the questions I was asking. He was surprised that I was so knowledgable about what has been done to Tom, what proceduces he has had done, etc. (It pays to pay attention!)
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Hello Bob and welcome to our wonderful family. We are sorry to hear about your Father. Where it is located determines how they treat it. The size also helps to determine that and in fact there are several “names” among the CC Cancers as well. It would be a good idea to make a list of questions to ask the doctors for the next visit and write it all down. At the top of our pages here we have a Search Engine which is very helpful and all you have to do is type in a word and past posts will appear with that subject matter. We are glad you found us as this is the best place to be. Read up as much as you can as to be for warned is to be for armed and an informed advocate is the best kind to have. This is a huge shock to everyone involved when the diagnosis is made but honestly once they give the diagnosis and a game plan is in place you will all feel better because something is being done. Good attitudes help immensely. My husband is almost a 5 year survivor of a Whipple as his CC was in the bile duct valve. He is 77 now and we call him the Miracle Man. Miracles do happen! Please keep us posted on your father.
It makes a big difference. It can determine if the tumor is resectable and if so will your father need just a liver resection or a whipple procedure. I am recently out of the hospital and pumped full of drugs so I will let someone else come and explain more or you can google the difference in the surgeries.
I am very sorry your having this problem. One of our members, scragots is from Indiana and was treated at IU and has nothing but positive things to say.
We are a great resource of knowledge and support and I am happy you found us.
Kris
Well, after a couple false starts – there is a tunmor! No, there is no tumor, it’s gall bladder problems! – we finally got the word today that there is a tumor in the bile duct. The only thing we know right now is that it is close to the liver. We don’t know size, margins or even whether it’s malignant. He was at IU Med Center today in Indy. Obviously not the news we wanted, but it’s what we got.
My question is – how much difference does it make where the tumor is located? If any?
Thanks
Bob W
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