Topic: New to this site.. my case

In June of 2007 I experienced nausea that would not go away .  After about a week I went to my family doctor and he djd blood tests and my billary levels were very high.   He scheduled a CAT scan and MRI and an appointment with a gastroenterologist.   He suspected a Klatskin tumor after he read the results but was not sure.  They scheduled an endoscopy and put a stent in the bile duct to open it up and took tissue swabbings to check for cancer.  The stent did allow bile duct to flow and nausea and symptoms subsided some.  The tests did not show a malignancy.  However the doctors felt that a tumor was causing the bile duct to close off.  They scheduled surgery for the first week of August.   They removed a 2 cm or so tumor and it was malignant.   One doctor told me it was stage 1 and the other doctor told me it was difficult to stage this kind of cancer.   The doctor came to me after surgery to tell me they felt that they had gotten it all, but 2 days after came to report that pathology had made a mistake during surgery and the margins were not clear as reported.  This was devastating, as they took very little of my liver and the doctor was prepared to do so to increase my chances of a cure.   Well, he was still hopeful and told me that radiation and chemo could still clean up and cancer left and he was still positive.  I had a 3 week stay in the hospital complicated by serious bleeding and then an unexplained (God's help I believe) stopping of the internal bleeding.  After 3 painful weeks in the hospital, I had a painful 3 week recovery out of the hospital.   I had lost over 40 pounds since June and was having a difficult time regaining, however I did regain it and am up to close to normal weight at this time .  I had 5 weeks of chemo and concurrent radiation.  After a rest period of 30 days I had brachy raditation therapy (not paid for by insurance unfortunately), for 3 sessions over 3 weeks ending just before Christmas 2007.   The doctor has done blood work and all seems okay .  My tumor count is 18.  I am not sure if that is okay or not.  Hopefully it is.  My oncologist has recommended an agressive approach and now is recommending 3 or 4 months of Gemzar.  Does anyone know if this is the course I should take?  He says if the cancer comes back, it will be stage 4 and I am in big trouble.   I am kinda tired to be honest and not sure if this is the right step for me. I have two drain tubes that I flush twice a day and they have not yet been replaced as they seem to flush fine.   I have a fungal/or infection on one of them now and it is causing me discomfort, but it seems to be responding to the creme the surgeon recommended.   Any input folks?  Thanks alot.   Jeff

Re: New to this site.. my case

I do not know where you are, but I would recommend finding a facility that is following the Mayo protocol for CC. They use chemo/radiation/transplant and have been having 80% success rate on early stage CC.

We are at the University of Utah. Our dr is William Hutson. His staff can be reached at 801.581.2121. They could send you a copy of the experimental protocol being ran by Dr Jason Schwartz. Any and all information for you at this point will be helpful.

God Bless,
Brenda

Re: New to this site.. my case

Dear Jeff,
Welcome to the site and so sorry for the circumstances leading you here. 
Personally, I believe in gathering as much knowledge as possible when encountering the diagnoses of CC. This encompasses the collection of all medical records, including the surgery report, CT scans, physician

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER