← Return to Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

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@jerrydrennan

@afrancesca
Thank you for the information . I was diagnoised with CC in 3-2017 i under wnt the chemoradiation brachey theraapy to have a liver transplant. I was transplanted sept 2018. I have found out by reading my record that my explant tested positve or active adenocarcinoma resedue. Positive for perinuerl invasion. When i asked my Dr about what was going on they want to start me on chemotherapy / antirejection. Now that i have had the tranplant are these tratments a option for me. I had volunter for several studys . But nothing was told to me about the results. Thank ou fr your time
God Bless

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Replies to "@afrancesca Thank you for the information . I was diagnoised with CC in 3-2017 i under..."

Wow, Jerry. That is an interesting question.
Have you considered asking your doctor to explain this to you? If you are not due for an appointment in the near future, why not send the question to your nurse coordinator thru the patient portal?

I’m unfamiliar with treatments available post ptransplant. However, There are many patients connected with the Cholangiocarcinoma Foundation who have undergone transplants. I strongly encourage you to call the Cholangiocarcinoma Foundation and request to be assigned to a patient mentor and assigned to someone in the cholangioconnect program. They will match you up with people who have also gone through a transplant and can help connect you to resources that are specific to post transplant treatments . At which Mayo location are you being treated? At the mayo clinic here in Phoenix, you can request to see a social worker ( I recommend Elizabeth Matthews she is helpful and knowledgeable about how the Mayo works) To help you to re-open/repair communication between you and your healthcare team. If you are at another location, maybe this site’s monitor can make a recommendation for who the experienced social workers are at your location ? Furthermore, It is standard for many patients to get second opinions at 2 different major cancer centers at transition times in their treatment plans. While all the major centers have similar transplant protocols, different centers might offer different clinical trials/treatments for patients post-transplant. You are doing the right thing by staying on top of this now and searching for answers. I have recently just discovered this site and it is wonderful. However, this is such a specialized area even within colangiocarcinoma and again I urge you to contact the Foundation as they know all the transplant specialists and what is offered, including, of course, what is available at the different locations of the Mayo Clinic . I’ve learned that as a patient, it is my job to be my own advocate. Once you contact the foundation please let us know how it goes as maybe there will be others who come to the site who have the same questions.