My name is Kathryn and my husband Jeff was diagnosed the end of May 2009 with cholangiocarcinoma. We live on the west coast of Canada and the top surgeons for western Canada are in Vancouver. Three failed attempts were made to do an ERCP and three failed attempts were made to do the biopsy and shunt placement percataneously (thru the skin). The fourth attempt (or seventh depending on how you look at it) was successful. It was determined that 40% of Jeff's liver was already atrophied. Of the team of three surgeons who perform the surgery of tumour removal, the first two said "I'm sorry, we cannot do the surgery. It will be about quality of life."
Our three grown kids did the research on the third surgeon, Dr. Buczkowski and found that he was renowned for radical procedures and conservative post surgical care. Just the guy for us. With quite a bit of lobbying, we were successful in convincing him to at least try.
On the eve of Fathers Day and summer Solstice (June 21), Jeff had the surgery where they removed 60% of his liver (including the tumour) and his gallbladder. The surgery was 7 hours and Jeff had a difficult recovery and was unable to leave the recovery room for over 9 hours (usually it's 2.5-3 hrs we understand). Initially his recovery was difficult. His liver function tests were not optimal and the night after surgery he went "tacky" with a blood pressure drop to 70/50, a heart beat of 149 and a fever of 102 degrees. An emergency CT scan was done as well as a series of other tests and I thought we were going to lose him that night. He stabilized after about 8 hours and began to progress towards healing on day 4 post op.
We brought him home on July 2 and he has had a steady and progressive healing process.
The pathology report says "negative margins' on the tumour which was great news. The not so great news is the biopsy on the 6 N1 lymph nodes indicated cancer cells in 4 of the 6 lymphs removed.
According to all the clinical studies we've looked at the statistics suck for long term survival and so Jeff has been dedicated to a regime of a plant based diet, no sugar, no alcohol, no dairy, daily exercise and infra red sauna. In the past 2 months he's had more energy and felt better than when he was a teenager.
Recently he has been experiencing unexplained chills and night sweats. This is of course very worrisome and we will be seeing the doctor soon.
I'm wondering if anyone out there has had similar experience with negative margins but N1 nodes with cancer cells? What treatments do you recommend?