February 26, 2019 at 8:19 pm #98223debnorcalModerator
i am so sorry that your son has been diagnosed with CC, but so glad you found us. This is a rare disease and most community and regional hospitals are simply not equipped to treat it. Your son needs to be seen by one of the expert centers, who see many CC patients and are on top of the latest and most promising treatments. Fortunately, you are near some of the best expert medical centers for this disease. You can find a list in the “newly diagnosed” section of our website.
I wish your son the very best.
DebbieFebruary 26, 2019 at 3:30 pm #98221Jeff03038Participant
Thank you very much for the reply. This is the type of information we need. I am sure that we are not in a unique situation but the information that has come from the Doctors has been cryptic and they seem to be afraid to commit to anything. We will ask for this information that you outlined.
Again, thank you for your kind response.
JeffFebruary 26, 2019 at 9:44 am #98220herculesModerator
Jeff, first off welcome, I am sorry for all you and moreover your son have been through already, collect all his records and cd’s of images and keep a file for second opinions and future, have his biopsied material ( I assume the surgeon took a tumor sample before leaving the room ) and then had a pathology report on sample then froze a part of sample, you must request a surgical report and a pathology report and ask if they did a genomic test on the sample, if not arrange your own test to seek clinical trial or perhaps ketruda or other new treatments. Join facebook group for PSC and for cholangiocarcinoma warriors, there are many who are dealing with what you are, I wish you and your son the best, PatFebruary 26, 2019 at 7:49 am #98219Jeff03038Participant
I am new at this but my son was diaganosed with CC two weeks ago. He was undergoing a Liver Transplant because he has Primary Sclerosing Cholangitis. He had multiple biopsies and even had FISH Test that was sent to the Mayo Clinic. The surgeon said that she felt abnormal tissues in the liver and in multiple areas near the liver. They biospsied and the samples came back positive. They also stopped the Surgery. We were notified by the surgeon in the waiting room who just laid it on the line. Said it was Metastic.
Then a week later she came back said it was positive for cancer and basically left. We met with her again and she said a transplant is impossible now. We met with the Oncologist last Thursday and on Monday, my wife and my son met with the local oncologist who will be his doctor. Finally, we found somebody that seemed to care.
He is going to start Chemo next week. He is getting a blood test today. Meeting with a PA tomorrow and on Thursday getting a PET Scan.
Has anyone ever had something similar happen to them or there family. I feel so alone.
We live in the Boston Metro Area and are current at Lahey Hospital. People have told me we need to go to Dana Farber, but we want to start treament as soon as possible.
I would like to hear from somebody who may have gone through something similar and if they could share what works and what doesn’t work. I would so grateful.
Thank you .
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