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Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?
Liver Cancer | Last Active: Oct 2 4:33pm | Replies (219)Comment receiving replies
Hello Fellow PSC / CCA patients and support resources. I am a 68 year old male diagnosed with PSC August 2020. At my yearly Mayo MRCP follow up Sept 2022, Mayo identified a CCA tumor which was resected Oct 2022 On 3/8/23 I had a followup CT which shows recurring CCA tumor. Not good news. One of the Doctors I met with forecasted 6 months or possibly up to 1 year left to live.
I have not been on any Chemo or similar therapies and do not plan to pursue in the future. An option my Mayo Oncologist proposed was pursuing a biopsy of the tumor to understand tumor characteristics and markers which may enable more targeted therapies.. My Oncologist also proposed Radiation which he says will likely be quick (not a 6 month ordeal) plus this therapy would provide “good” quality of life plus extend it. I am planning to pursue the biopsy and a consultation with a Mayo Radiation Oncologist.
My wife and I have a blended family with 5 children. All our kids have been married prior except for my youngest son who is planning a wedding 10/1/2023. I’m very concerned I may not live long enough or be in good enough physical shape to attend his wedding.
Does anyone have experience / feedback related to radiation therapy?
Replies to "Hello Fellow PSC / CCA patients and support resources. I am a 68 year old male..."
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I was diagnosed by Mayo 18 months ago w/CCA and have had chemo, immunotherapy & targeted genetic therapy so far. The genetic therapy is the only one that has worked to shrink my tumor so far. Mayo said will operate once my tumor is no larger than 2cm. Next week’s MRI we are praying shows continued shrinkage. I understand your frustration, but remember that we don’t have an expiration date! I only have 1 other targeted therapy & one chemo left before I run out of options. Radiation would be my last procedure remaining. If that happens, I’ll go holistic and would even consider Ivermectin! Keep going no matter what! You owe it to yourself & your family to fight. I’ve already made my peace with God and though I believe he has healed me (faith here in this life or in heaven) you need to keep yourself positive. Find your faith and keep up the fight! You’re worth it!!!!