Austin Newly diagnosed (stage 4)
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Austin Family, Welcome and sorry you had to find us. Your post expresses what all of us have expierenced, this diagnose comes out of no where. I am a CC survivor, I was given 6-8 months to live, I have been cancer free for 2 years. I was lucky to be diagnosed by someone who knew what they saw and knew my only HOPE was a liver transplant and was immediately put in Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I have a remarkable story to share, please read it at thetelegraph.com under christmas miracle, it is so ful of HOPE. (Also my FB page, Catherine-Sims Dunnagan has 2 Dr. Chapman success stories)
When I post about Dr. Chapman it is so hard to find the words, he is so much more than a great doctor. Dr. Chapman is one of the top in his field and has been known to say yes where others have said no. Also Barnes is listed as CC center.
This site will be a lot of help and comfort for you and your family. Please email me or call (618-567-3247) if you would like more info or help.
Lots of prayers-CathyHi,
I suggest John Hopkins for your husband for PET SCAN,medical oncology , radiation oncology consultation and overall care.
John Hopkins is the #1 hospital care provider for the past 25 years.according to US News & World Reports.
If there are no metastasis in other parts of the body from the PET/CT scan, and if your husband has extrahepatic bile duct cholangiocarcinoma as I think it may be, be sure to ask if liver transplant is an option . Mayo Clinic or Dr. Keto in New York or Dr. Chapman in St. Louise are your next places for liver surgery opinion. However if the PET/CT scan is positive for metastasis, patient will not be able to qualify for either liver transplant or liver resection in general.
God bless.Dear Austin Family, WELCOME to our wonderful family where you will find the most caring and courageous people from all over the world.
Take a deep breath because I know you feel as if you were just hit in the stomach with a baseball bat.
We believe in 2nd and 3rd opinions, and for the area you are in I highly recommend Jim Wilde’s, Dr. Kato at NY Presbyterian Hospital. He is among the top for treating CC. Those that have gone to him all worship him! I know Jim will jump in here as well.
I want you to know that we have many who were diagnosed at Stage IV and they are still here to help and guide you! As a family you need to gather your inner strength and be as strong as you can as attitude will help immensely in getting through this. Please keep us posted as we all really do care and you have come to the right place.We are in total shock!~ WE just got back from the oncologist and were informed my husband has Stage 4 Cholangioma Carcinoma. WE live in Pennsylvania, with easy access to NYC, NJ, Phila and JOhn Hopkins..so all hospitals are within driving distance. WE are starting chemo MOnday with Cisplatin/Gemsitabine…..WE saw a local oncologist and she told us..there really is no cure and that this is all just basically palliative care.
He had so many tests for months and finally thru Jefferson they inserted a camera and this is the diagnosis. There was not a giant tumor, this originally looked like scar tissue and was difficult to diagnose..so we waited 4 months to get this final diagnosis…but it is in the binary ducts.
If anyone can point us in any direction as where to go for a second opinion, please post! We are learning as much as we can. but are hearts are broken and our heads are spinning….He needs to get a pt scan to see if other lymph nodes are affected..Please share your thoughts!!
thank you……The Austin Family and friends
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