How Did I get Here?

I haven't actually met someone else who's been diagnosed with gallbladder cancer (GBC), but I have read some stories in blogs and on discussion boards about the experiences of others. My initial questions about someone else with this diagnosis focus on how and why the disease was diagnosed, and how they have been doing since the diagnosis. I mention some of the details of my experience in my first post, but want to say more.

Before surgery, I had no pain and my only symptoms were funny colored urine and itching. A week after the symptoms began, I saw my doctor, and by then some jaundice was visible. I had an abdominal ultrasound which revealed stones in my gallbladder (not a surprise as many family members have had stones and had their gallbladders removed), but no indication of why my bile duct was blocked. The doctors attempted an ERCP (Endoscopic Retrograde Cholangiopancreatography) the next day, but could not clear the blockage, and in fact were unclear about the cause of the blockage. A CT scan two days later revealed little more, a second ERCP was attempted, again unsuccessfully, and then surgery was performed, at first laparoscopically, and then with a full incision. The surgeon could tell that I had cancer in my bile duct; he performed a bypass, removed my gallbladder, and took samples of other tissue for testing. Pathology tests performed after the surgery revealed that the cancer originated in the gallbladder, and had spread to some surrounding tissue (besides the bile duct), meaning that I have State IV gallbaldder cancer. It's a grim diagnosis.

The cancer is rare, affecting 3,000 to 7,500 people in the United States with a new diagnosis during this year. (The numbers vary somewhat depending on which website you go to, but the numbers are very low given the total number of people in the U. S. right now.) Many people survive only 2-6 months following the diagnosis. Some folks seem to make it longer (and I'm determined to be one of those), but it's not clear what percentage do well over more time, and whether or not one of the new drugs being used for GBC are making a real difference over time in quantity and quality of life.

Since the surgery and the diagnosis of GBC, I have been recovering from the surgery and dealing with many responses to the diagnosis (more about that another day). In mid-July I had another CT scan and bloodwork. My cancer marker was down, and there was nothing in my (clearly rearranged by surgery) abdomen to indicate that beginning chemotherapy made sense then. I am feeling amazingly well, and waiting until I feel bad or the spread of the cancer shows up on a CT scan to begin therapy.