February 15, 2019 at 6:31 pm #98168vtkbParticipant
My wife has both PSC (found out at her liver resection) and ICC, as well as UC. She was diagnosed sept 2016. There are multiple posts on here to help people get started in fighting this disease, but the main/common themes are: Get copies of your scans. Get a good surgical resection opinion (although it depends on which lymph nodes are involved, where your tumor is etc, usually with lymph node involvement you wouldnt be a surgical candidate up front). Get a medical oncologist who treats this disease and also a second opinion – the first chemo they try is usually gem/cis. Ask to get your tumor and blood tested for genetics. Based on the genetic profile of your tumor there may be targeted therapies available or clinical trials that you can be eligible for. You’re likely in good hands at Mayo, but there are other major centers that are also good if you want second opinions- MD Anderson, MSKCC, etc. You may want to also join the cholangiocarcinoma warriors facebook page which is for patients only and ask some questions there as well as on this board. Good luck in your journey.
February 15, 2019 at 6:27 pm #98167bglassModerator
- This reply was modified 4 months, 1 week ago by vtkb.
Welcome to our community. This diagnosis can feel overwhelming – please take a look at the many resources on the Cholangiocarcinoma Foundation website for newly diagnosed patients. They may help you formulate questions for the oncologist.
This cancer, in its medical aspects, is a team sport. In addition to an oncologist, you may want to seek opinions from an interventional radiologist and a surgeon, especially if the cancer is confined to the liver and nearby lymph nodes. If you will be seen by a major cancer hospital, the oncologist may send your case to a tumor board comprising the different needed medical specialties for determining treatment options for this cancer.
It is also important to look into genomic profiling, as many patients have genomic alterations for which targeted treatments are available, often through clinical trials. More information on this topic is available on the Foundation’s mutationsmatter.org website.
Please stay in touch and send any questions our way.
Take care, regards, MaryFebruary 15, 2019 at 1:46 pm #98165Maryrita64Participant
I have both PSC and CC. Although the tumor is 13mm…I found out while at Mayo (undergoing transplant evaluation), that I’m not eligible for a liver transplant, as it’s spread to my Lymph nodes. I was sent home and referred to Oncology. My first consult is Monday, Feb 18th.
I’m still trying to absorb it all and I’m scared. Any help, advice, etc is greatly appreciated
Thank you in advance
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