Just got the news….
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Dear Debora, We would all like to assure you that your grandma will be ok, but unfortunately, no one can predict that and this is an awful cancer and usually diagnosed late, but it sounds like you are going to have the camera which will give them a better idea of the state of the cancer. Chemo is a standard treatment, but I must agree with the others that a major cancer treatment center is best. If she might be a candidate for resection, that would be awesome. It is a difficult time for you and your grandma, so please come here often and give us updates, share your thoughts and feelings and let us be whatever support we can for you. We have been where you are (in one way or another) and we really care and understand. Blessings, Susan
Debora, I was treated at Columbia Presbyterian in NYC and had a successful resection about two years ago by a brilliant surgeon, Dr. Tomoaki Kato. I’ve been clean so far, and have another CT scan in May. Dr. Kato will offer another opinion if you make the arrangements and send him the medical records and scans. You can count on him to provide an honest opinion. BTW, he has a reputation of operating successfully on ‘inoperable’ patients, but he won’t take a case with no chance of success. He’s very creative with difficult circumstances. There is complete contact info for Dr. Kato under the “hospitals” link below my name.
Because this disease is so rare, you may have to do a bit of traveling for the best care. Where I was treated is nowhere near where I live. Best of luck.
Dear Debora, welcome to our wonderful family. Coming from Wisconsin myself I can tell you we don’t give up. I know we have had some members who were treated at Madison. If you go to our Search Engine at the top of the page and type in Madison I am sure posts will come up. I know the love of a Grandma is the best thing in the world. The most important thing you can do for her is to be strong and that with your speciall love is a winning combination. Please let us know how the scope goes with the camera. You have come to the right place for good support. Give Grandma a kiss for all of us.
Jim and Gavin:
Thank you both very much for the information on where she should be treated.
What city/cancer center would you recommend? We live near Madison, WI and I believe she was diagnosed at the UW hospital in Madison. We have not started any treatments or put in any stents yet, but the doctors were talking about going through chemo treatment. Tomorrow, they’re going to go in with a camera to get a better look at the cancer. As far as we know, it’s external.
Thank you both for the support; I really appreciate it.Debora
Dear Debora,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your gran. But I am glad that you have joined us here as you will get a load of support and help from all of us. Can you give us more information please regarding your gran’s diagnosis? Like Jim has asked, where was she diagnosed and what treatmen st did her doctors there talk about?
No one here can tell you that your gran will be alright, I wish that we could but we can’t. I know how you feel right now though as I felt the same after my dad was diagnosed. He was diagnosed with inoperable CC back in the summer of 2008 and I went through the same feelings that you are experiencing right now. I really wish that we could say right now that everything will be alright, but we can’t. But that is not to say at all that there is no hope. We have many members here that are/have undergone many types of treatments and are doing well, so please do not give up hope.
As to the turning yellow, yes my dad went like that as well with the jaundice and that is very common for this cancer. His bile duct was blocked so the bile could not flow hence his going yellow. He had a metal stent inserted and that helped the bile flow again so relieved hsi jaundice, but it took a bit of time for the yellowness to fade. You have come to the right place here to look for support and you will get a ton of that here. And please, feel free to ask any questions that you have and we wil all do what we can to help in answering them. We are not doctors, but we know how you feel right now and what you are going through.
My best wishes to you and your Gran,
Gavin
Debora, sorry you and to find us and welcome. I can’t tell you your grandmother will be alright, but I can tell you she needs to be treated at a big city/major cancer to have a decent chance. Where is she being treated? Has she had an ERCP and had stents placed yet? Stents will reduce or stop the jaundice. What other treatment is she getting or is planned? You may need to get more opinions depending on your confidence in the planned treatment.
This is a rare cancer, that’s why it needs to be treated at a major cancer center, where they have the needed experience. See the links below my name, assuming you are in the US. Good luck.
I just got the news today that my grandma has CCA. I need assurance that she’s going to be alright. The cancer itself is a little bigger than a golf ball, and she turned yellow from it-if that helps. I don’t just want “i hope”s I REALLY really want to know FOR SURE that she’s going to be alright. She’s had cancer before and got through it just fine. She’s 66 years old
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