ashley

Welcome home, Lisa! Rest and eat!!! Hope you see you back here on the discussion boards soon!
Ashley

Amy,
I’m so very to hear of your mom’s passing. My thoughts are with you at this difficult time.
Ashley

Hi Ed,
Welcome to the discussion group. I would also like to hear about your diagnosis. Please do not take one doctor’s word that you have SIX months. My mother’s local doc told me she had ‘ more than a few months’ and now she is currently in a transplant program at a nother hospital where she may have a chance at long term survival. A few important things to learn about this cancer: 1. It is rare and since prognosis is labeled as ‘dismal’ many docs don’t bother to tell you about trials, protocols, etc.
2. It is wise to get several opinions
This site has a listing of docs that board members have used – please take a look and see if there is someone in your area.
Looking forward to hearing from you again.
Ashley

John,
Sorry to hear your news. The fact that the doctors are talking surgery is a HUGE plus. Even though you call your diagnosis advanced, is sounds like it may at least be contained to the lower bile duct near the pancreas? You will find many strong willed patients and caregivers on this board willing to help you with any info you need. My mother’s CC is called a Klatskin tumor and it up near the liver, so I’m not familiar with the pancreas area for our specific case – but I’m sure many other members will chime in shortly to help you.
Stay strong
Ashley

Hi Elaine and Gary,
I hope BCBS changes their tune after getting the oncologist’s letter. Unfortunately I am not familiar with the abalation ( RFA) procedure but I am sure someone on this site has info for you. Ironically, my family is also waiting on BCBS. After my mother completes her Mayo pre-transplant testing this week and gets the doctor’s final recommendation, BCBS will take this info and determine if they will cover the transplant. In the meantime, the Mayo gave my mother a 460K figure last week for the cost of the transplant including the live donor surgery. The figures showed the downpayment without insurance to be ONLY 60K!! Obviously we are dumbfounded and crossing our fingers that BCBS will approve it.
I am hoping BCBS brings us both the news we want to hear!
Keep us posted..
ashley

Deb
We love to hear great news!!! Congrats!!
Ashley

Hi Beth,
Sorry to hear your news..we were all right there in your shoes at one point and understand what you are feeling.
The biopsy is usually done through a procedure called an ERCP or PTC
( external drain) . They take brushings of the tissue. Beware that these brushings are only 25% effective in detecting cancer. If they add genetic testing to it ( takes days) then the effectivenes is only 45%. Another indicator is the CA 19-9 tumor marker, which is done by a blood test. They should also test the IGG4 through the blood because there is a small chance that the tumor may be benign and treatable with prednisone. We learned all of this through my mom’s experience at the Mayo clinic, where we went for a 2nd opinion. Our first doctor did not test for 1GG4 (my mom had CC anyway) and never told us the brushings were not very effective. The best advice I can give it is make sure you are in the hands of experienced doctors. CC is very rare.
Additionally, they would not biopsy the obstruction ( tumor) itself in fear it may spread if it is CC. As a result you can be diagnosed without having a positive biopsy but rather a combination or factors that point to CC ( ie: high CA 19-9, visible tumor, PSC disease, etc). There are surgical procedures that may be available or even transplant – all usually depend upon location, size and spread of the tumor. Recently website members started collecting data on which hospitals are more experienced with CC. If you don’t find the locations quickly, reply back to the group and tell us where you are and I am sure someone will provide you with a recommendation of where to go in your area. Good thoughts are being sent your way.
Ashley