Feeling clueless…

Hello! I have recently found this board and there is tremendous support here. Where are you located? There are excellent facilities for treating this..Cleveland Clinic, MDAnderson, Johns Hopkins, Mayo Clinic. I agree with the others in saying to seek a second opinion with someone very knowledgeable. I was told by the first gastroenterologist I saw that he could do “palliative care.” I was horrified! In no way was I going to just curl up and die! I went to Johns Hopkins, having been referred to a liver transplant specialist. He actually had not much experience with Klatskin tumor although knew his way around the liver and was expert in liver transplant. I finally got to someone who was an expert in cancer of the bile duct as well as a superb surgeon and things began to look up for me. It takes some time to wade through all the information and it’s so difficult to make a decision when you’re dealing with the shock of it all. In addition, it is such a rare cancer that the ordinary physician has very little or no experience with it (which is why my diagnosis took 1 1/2 years after a raised liver enzyme count!)…

There are such wonderful and knowledgeable people here…you’ve come to the right place. Do seek a second opinion. Mayo Clinic has a call-in number where you can talk to someone whether you live in the area or not. It is definitely worth finding out all you can….

Best of luck to you.

Kathy

Lotsofquestions – Everything Susan said is absolutely correct regarding “cc.” There does not seem to be a ‘normal’ with this disease. It can be overwhelming and sometimes maddening. Lainy is right in saying to try and find doctors who have dealt with this disease…which is not easy. If you want to do the research, this is the place. And if you want a lot of support and love, this is the place. And if you want to just scream and vent, this is the place. Keep us posted and take time to breathe – Nancy

Dear Lots – You are absolutely right that educating yourself is the best first step. While everyone reacts so differently to this cancer and there are many physical differences in where each one’s tumor(s) are located, etc., we have been told by more than one oncologist that frequently with inoperable tumors they say 4 to 6 months without treatment (chemo) and maybe up to a year with treatment. However, you will find people on this site that died 2 days after diagnosis and thankfully, those who are here 5 years later. It is very individual. No one reacts the same. My husband is 58 and his primary site of cancer is in the upper lobe of the liver from the pancreatic duct. He has not needed stents (so far), he does not get jaundiced, he has not had an infection since he was diagnosed in late July 2010. He has had other things – nausea, vomiting, weakness, water retention, pain. Every month they increase his pain patch to control the pain and we have vicodin for break through pain. He has changed his diet and a soft diet seems to help at this stage. I wish I could give you better information and as you spend time reading on this site, you will learn so much. I have done internet searches, but I have learned more on this site than anywhere else. Also, the kindest people you could ever hope to know are here. Welcome to our family although we are so sorry you had to find us. Post often, ask whatever questions you want, use the search bar for specific topics on this site. Embrace your good days with joy and appreciation and hold on tight on the bad days. It is a roller coaster ride and much of it is not fun. The good news is that you have her today to hold close, create precious memories, and let her know how very much you love her. Blessings to you and your family, Susan