April 12, 2012 at 7:04 pm #59816amyMember
Your question is so pertinent, and was one of the first questions my husband and I asked before and right after surgery when the liver piece was sent for pathology. The next question is how. Although there seem to be no real answers, it is something that is always in the back of your mind. With this being a second primary for my husband, we had yearly CTs etc, this nasty cancer really snuck up on us.
Thank you Dr. Sonneday for posting it means so much to those who have cc and those who are the caregivers. Thank you for your work, and giving so many people — time. Our surgeon was Dr. Mark Orloff in Rochester NY, our hero.
~AmyApril 12, 2012 at 6:55 pm #59815gavinModerator
Hi Dr Sonnenday,
Welcome to the site. Thanks so much for joining in with us all here and it is great that you are here. I know that you will be of great help to so many people and I am looking forward to hearing more from you.
Thank you once again and thank you also for the work that you do.
My best wishes to you,
GavinApril 12, 2012 at 6:46 pm #59814gavinModerator
I wish that I could help in trying to answer your question for you but unfortunately I can’t. My dad was diagnosed in late summer 2008 and passed away in Dec 2009. I too sometimes wondered how long his cancer had been growing for but we never asked so we don’t know. Sorry I can’t be of more help.
GavinApril 12, 2012 at 11:33 am #59813andieMember
My Dad had Bowel cancer in 1981, 2000 and again in 2001. He had regular blood checks for a certain cancer marker. My Dad became jaundiced in February 2010, the doctor sent him for blood tests including the cancer marker test, the only thing that showed up was high bilirubin levels. When he had a CT Scan the radiologist asked him if he’d had his gallbladder out, he hadn’t, but it had shrivelled up! This was never mentioned again and I often wonder if this was related to his CC. Dads CC was in the bile duct, inoperable due to location. I also wonder if having Bowel cancer contributed to making my Dad more prone to cc?April 12, 2012 at 3:08 am #59812lainyMember
Welcome, Dr. Sonneday, to our extraordinary family where you will find the most courageous and loving people the world over. I dare you not to become addicted to us!
My husband was the CC patient and survived 5 1/2 years after a Whipple having passed Dec. of 2010 at 78 years old. I found this site in January of 2006 shortly after it began and I became addicted to my new family.April 12, 2012 at 3:00 am #59811kris00jMember
CM: The tumor in my liver was about 4-5cm when discovered and when I went to Dr. Fong at Sloan Kettering in April of last year he said it had probably been growing for about 9 months. But like everything else about this disease, it’s a guesstimate and I think each person is different.
Dr. Sonneday: welcome to the board. I’m sure we will all benefit from your knowledge.
Personally, whenever I talk to anyone who is having gastric issues, if they are having tests done because of the extent of their issues, I always tell them to get a blood test and have their bilirubin and CA 19-9 levels checked. So far, if I’ve seen them afterwards, things have been fine. But I would rather err on the side of caution.April 12, 2012 at 1:10 am #59810hpb_txp_surgMember
Cathy – thanks for the warm welcome and congratulations on your inspiring personal story. Dr. Chapman is indeed a star in our field and a personal hero of mine. He was one of my instructors and mentors as a medical student at Vanderbilt in the early 1990s, and he remains an important source of encouragement and mentorship to me. Clearly he took great care of you and he continues to advance the fields of hepatobiliary and transplant surgery.
I am honored to be included on this board and will post as much as I can in an effort to be helpful.
You all inspire me to do my job. I am very lucky…
CJSApril 12, 2012 at 12:57 am #59809jathy1125Participant
Welcome-Dr. Sonneday, your name has been mendtioned many times as a ray of HOPE, on this board many times! I am a CC survivor thanks to Dr. William Chapman at Barnes-Jewish in St. Louis MO. (I am sure his name is very familiar to you!!). Dr. Chapman saved my life twice, I had 2 transplants a month a part because of my hepatic artey ruputuring due to radiation damage!
Thanks for all your positive thoughts about CC and transplant as an option.
Keep posting and giving HOPE!!!
Lots o prayers and HOPE for all our CC family and Dr. Sonneday for all his great work and compassion!!-CathyApril 12, 2012 at 12:08 am #59808hpb_txp_surgMember
Hi CM –
I am a hepatobiliary and transplant surgeon, new to this blog, but excited to participate as it has been a great service to so many of my patients.
Cholangiocarcinoma is generally thought of as an “indolent” cancer – we believe that in most cases it takes months to years to grow such that it eventually causes symptoms or signs that lead to diagnosis. In fact, it is this behavior that leads to many patients being diagnosed at advanced stages, as the disease has had much time to grow and potentially spread prior to diagnosis.
Obviously in any one case it is impossible to answer, but I suspect your loved one had this disease evolving for at least months if not longer prior to his diagnosis.
In some circumstances I meet a patient who had imaging studies or laboratory studies that were performed months (in one case I recall 18 months) prior to diagnosis and in retrospect showed abnormalities that suggested the cancer was there, though unfortunately missed. We obviously need to get better at diagnosing this cancer earlier in its course.
Hope this answer is helpful.
University of MichiganApril 11, 2012 at 10:21 pm #6638cmMember
I hope this isn’t upsetting to others but I am sorry I don’t know who to ask.
My OH was diagnosed with stage 4 CC May 2010 with secondary disease in liver, bones, pelvis perhaps other organs.
Many of you will know we lost him to the disease after 13 short months despite giving chemo our best shot.
I keep wondering how long could he have had this disease before it was discovered?
We had met 6 years before, married nearly 2 years and a 10month old baby at the time of his diagnosis- was CC there throughout all of that?
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