Jules, most definitely your father can continue on.  My purpose for joining this site is to help others with the knowledge that I've gained and to learn more.  My husband would want that.



(5 replies, posted in Introductions!)

My name is Sandra Casey Buford and my husband was diagnosed with cholangiocarcinoma in April of 2002.  This diagnosis was  heart-breaking and scary; however I want to encourage everyone to stay the course because when I first started this journey with my husband, web-sites like this one did not exist...in fact there was limited information on the web.  My family devoured the information and resources that were available and I believe that we were greatly helped through a tough time.  My husband was able to live a wonderful life for five years during which our youngest daughter was married in a beautiful wedding, we traveled to Europe several times, and many more memories were created.   In the end Rudy, who was 58 years old, died of an infection (septis) this past February 20th due to complications that could very well have been post-operative.... it was never confirmed because he was too sick for surgery.  My words of wisdom to anyone going through this are:  (1) Always, always get second and third opinions from drs.  (2) Never accept a dire prognosis without exploring all options (3) Don't forego alternative treatment options and nutrition  (4) Push your health insurance provider to give you what you want and need....My husband's original resection surgery at an out of state hospital was denied, but we got a medical doctor to advocate and pushed until they conceded.  (5) Enjoy every single moment of life (6) surround yourself with positive people and engage in up-building experiences (7) Nurture yourself and your family spiritually

Hello, my name is Sandra and I am so very happy that this forum has been founded.  Five years ago my husband was diagnosed with cholangiocarcinoma and the internet resources were not nearly as robust.  This forum is wonderful.

On resection and physicians, my husband was diagnosed at Mass General Hospital and the entire surgical team said that resection was not possible.  At the time my husband was 52 years old and up until his diagnosis was an extremely healthy, fun-loving husband, father and grandfather.  We simply would not accept the doctor's pronouncement of eminent death in less than 8 weeks!  My husband had a large malignant tumor in his right lobe....the left lobe was functioning well and compensating.  My son got on the internet and found Dr. Rick Selby at the Univ. of Southern California who felt that the tumor was resectable and performed the 10 hour surgery...without a blood transfusion...because of our religious beliefs.  The surgery was successful...my husband regained weight....with a very healthy appetite for both food and life.  The 5 years gained were great.  Two years after the surgery small tumors were identified in his lungs; however we opted not to use chemotherapy.  My husband continued on until last year when he began to experience discomfort in his abdominal area....this progressed until October, 2005 when he nearly died of an infection in his abdominal area due to a perforated intestine and blocked duodenum.   He never recovered from a 12 day hospital stay and finally passed away in February 2005.  The cause of death was septis; cholangiocarcinoma.  I have many questions about what happened and how it happened.  For example, the doctors never confirmed that the cancer was back in the abdominal area.  The focus was on infection.