Welcome! I too am glad you found us, but sorry you had to. It sounds like you have a very positive attitude and have some options. You have found the best possibly place to be when dealing with this type of cancer. The knowledge and support are phenomenal. Please keep us updated as to how things are going. I’m sure others will be on soon to also give you a warm welcome. Wishing for the best for you on your journey.
I’m sorry that you had to find us but glad you have, given the circumstances. This forum is a great place for information and support.
I was diagnosed with Perihilar CCA the week before Christmas last year (Dec 2013) at age 47.
Especially given your location in MN, I highly recommend the Mayo Clinic – I travelled there from VA for a second opinion and, ultimately, curative surgery. The team is top notch and very experienced with CCA.
A large mass was found on my liver the day before Thanksgiving. After a month of tests, procedures, consultations, etc. we now know that it’s Intrahepatic Cholangiocarcinoma. My liver specialist and oncology team can’t definitively stage it because there are several local lymph nodes that are suspicious, but they can’t be studied without opening me up. It’s either Stage III or Stage IVa.
The good news for me is that my liver specialist (Dr. Srinivas K. Reddy) just opened a clinical trial in Minneapolis to study the synergy of chemo and radiation in shrinking these tumors in order to allow resection in the future. Age and good health are on my side – I’m 46 and generally healthy. We are hopeful that surgery will be an option in the near future. Doctors and nurses in the trial have said that they believe I will tolerate treatment and (hopefully) the eventual surgery well. I hope they’re right.
I’m glad to have found this group and am looking forward to reading your stories and learning from your experiences.