March 31, 2013 at 8:22 am #70344marionsModerator
Pat….Congratulations on being a long term survivor of this disease. We know that many others are out there showing long term positive results with this cancer; but too cancer survivors join our site therefore, huge thanks to you.
Our Bruce (2000miler) has been collecting data from our site and has provided us with some internal statistics hence, your posting will allow for an upward curve in the long term survival rate.
Pat, please know that the Cholangiocarcinoma Foundation provides an array of opportunities in various areas of advocacy. If you are up to it and would like to become part of our community please, contact me at email@example.com.
More than anything though, I am thrilled to know that you are doing well and that life is good for you.
Again, thanks for joining this fantastic group of members; you are a welcome addition.
MarionMarch 31, 2013 at 6:49 am #70343anatta23Participant
Congratulations. Your story gives us all hope.
Would you be so kind as to mention the size of the tumor and the grade of differentiation when it was discovered?
Thank you and enjoy your new life.March 31, 2013 at 4:53 am #70342lainyParticipant
Dear Pat, welcome to our family and you have already helped by posting the story of your journey. You have given others hope by celebrating your 7th Anniversary. When you were diagnosed is exactly when my husband, Teddy was DX and he had a Whipple. 5 Docs said no to chemo/radiation as they said it would not help. Even though he had clean margins. We have already come a long way in these 7 years. I wish for you continued success and please keep us updated. May I ask how often you see the ONC and are you still having scans? You are a new SUper Hero and we are glad you found us!March 31, 2013 at 3:09 am #8168herculesModerator
I am new to this site and I have just recently found this site.In september of 05′ my doctor discovered a tumor in my left hepatic duct with a ultrasound of my gallbladder and it was the first time I heard the name cholangiocarcinoma, he said “there is a chance, a very small chance, a fraction of one percent, but we must make sure this is not something very bad….Cholangiocarcinoma. Well as fate would have it this was, after five months of waiting for tests and appointments with multiple specialists I was operated on at the cleveland clinic. My liver was resected, my gallbladder was removed and a portion of the bile duct was removed.Sixty percent of my liver was removed and biopsy tests showed this to be cholangiocarcinoma in my liver and the tumor in the bile duct. I had no chemo as my oncologist said at that time there was no effective chemo for the genetic profile of my cancer.I went home on day five after surgery and was back to work in 10 weeks. I was 49 at that time and fortunately I had no complications or infection and I finished my career and retired in 2010 and I am grateful for every day. I have volunteered for numerous cancer support groups and have mentored a few people, sadly all who have done poorly against this awful demon of a disease making me more aware of how very blessed I am …I lost eighty pounds during my battle and fortunately I was able to keep my weight on with cannibis and a new diet. lack of appetite was my only side effect from the surgery besides not being able to lift heavy objects. I just celebrated my seventh anniversary of my surgery in january and I will be glad to share the details of my success with this awful cancer. I was lucky to have a tumor that caused a pain when I ate greasy food and drank a beer. My doctor said textbook gallbladder problem and ordered a ultrasound of my GB. I am pretty much able to do anything I could before and that is my story I hope I can help someone with my success…Pat
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