Brother MAY have CC –
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Hi Jennifer,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your brother, but you are in the right place here for support and help so I am glad that you have joined us. And you do not have to apologise for being blunt, we know what you are going through and can relate to it as we have been there and know that it is hard.
From what you have said, it sounds like your brothers doctors are not sure exactly that this is CC and also again from what you have said, it sounds like they are not very experienced in dealing with patients with CC. As Lainy has said to you we believe in seeking further opinions so would that be possible for your brother? I know you say that he has no insurance, and I am not sure how to go about that as I am from Scotland and have no experience of this so hopefully others can offer more on that issue. Perhaps you could follow Lainy’s suggestion of phoning some hospitals and see what can be done without insurance.
Here are some links that may be of use. This one of the major treatment centres in the USA –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
And this is one that was created by the members here which lists doctors and treatment centres –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
This is a tough cancer to diagnose and my dads doctors took over 3 weeks before they made his full diagnosis of inoperable CC. During that time he had all manner of tests, ultrasound, MRI and a CT scan along with bloods etc. His CC was deemed inoperable as the tumour was too close to the portal vein and that has been the case for others as well.
I know that you want to do the best for your brother, we all want to do that for our loved ones. And you have done the right thing in coming here and seeking information. The more information that you have the better informed you are and that will help your brother as well. Any questions at all that you have then please just ask and we will all do what we can to help in answering them. Would it be possible for you at attend the meetings that your brother has with his doctors so that you can hear first hand what is happening? And if you could attend these meetings then it would help for you to take notes and have some preprepared questions to ask. I was in that situation with my dad many times and it is very easy to forget what was said and to ask the questions that you had thought of before the meeting.
I hope that you keep coming back here and keep us updated on what is happening, we know what you are going through and we care.
My best wishes to you and your brother,
Gavin
So sorry about all that. The reason I am asking so much is that we just had a member here have a terrible experience in San Antonio at the University of Texas Science Center. I wish I could guide you on the ‘no insurance’ problem but perhaps other members will know more about that. It’s late now but I know in the morning you will get some more help. A ‘handful’ of cases is not enough to gain expertise in treating CC. Does your brother have anyone who can step in and be an advocate for him in Texas? I imagine calls need to be made to Hospitals that have more experience with CC to see what can be done without insurance.
Thanks so much Lainy – I have alot of missing info. because my brother has not been giving alot of info. He seems to report that his drs just don’t know. He is being treated at UT Health Sciences Center in S.A. – just yesterday, though he saw the oncologiat at the Cencer Center (not sure the exact name but will find out). His oncologist said he has had a handful of other CC cases. Don’t know why surgery is not an option but think it has something to do with his growths (tumors) being in two different places in his biliary tracts. He has 2 stents in – last MRI one week ago, though showed a “spot’ on his liver. Until then his liver had always been very good. The PET scan 2 days ago apparently made the oncologist think CC was likely – again, not sure exactly why.
I think initially (a year ago) surgery was not an option due to the placement of his growths – too hidden or something?
What questions should I ask my brother?
also, he has NO health insurance – are there 2nd & 3rd opinions that would see him?It is just a bad situation all the way around with such uncertainty, no insurance and a patient (my brother) who is sticking his head in the sand & not really dealing well with any of it. Sorry to be so blunt – I love my brother v. much & just want to help in any way I can.
Thanks for the support here on the site
JenniferWelcome Jkalama, to our wonderful family. I am very sorry to hear about what your brother has been going through. What have his symptoms been? Where is the CC located and what was his prognosis? We are strong believers in 2nd and 3rd opinions. Did they say why he cannot be resected? Where is he being treated and are they experienced with CC? I am hoping you can give us a little more information. He does have his age on his side and that is good. I am hoping your brother is not alone and that he has some support in San Antonio and someone strong to help him in his decisions. Please fill us in if you can as it seems a lot is missing here. You have come to the best place for CC and we look forward to hearing more from you.
Hi everyone, Just need to get more info. on this disease from others who have gone or are going through it. My brother is in in San Antonio, Texas and has been having symptoms for almost a year. He has had 11 biopsies – all inconclusive & has had numerous stents put in over the last year. He was responding well to prednazone (his doctors were thinking it was an autoimmune disorder since he doesn’t really match the profile of CC – he’s 43 y.o.) But now they think it’s likely CC & they will start chemo next week. apparently resection is not an option for him.
Have others had such a difficult time just getting the right diagnosis?
Thanks – from sister in NJ
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