Hi, my name is Tina. I was diagnosed on September 7th. I work at Johns Hopkins and left work early on September 5th to see my PCP due to increasingly darker urine over 5 days and pale/white stools for two days.
Intermittently over the last several months, I had pain in the upper right abdomen just under my rib cage. I had an ultrasound in January, a colonoscopy and endoscopy to followup on colon polyps in February, but no sign of this terrible disease. I kept thinking it was my gall bladder. I was diagnosed with Chron's Disease as a teenager which I have been told is one of only four potential precursors for this disease.
Late in the afternoon on September 5th, the PCP did a urine stick test and said I was mostly likely having some kind of liver problem and I should go to the ER. I returned Hopkins to the ER and after a 16 hour experience which included ultrasound and CT with contrast, I was admitted. I had an ERCP on the 7th, but the internal medicine team at Hopkins told me the news just before going down for the ERCP. The doc said it's one of two kinds of cancer and neither are good. CC was the eventual diagnosis confirmed by cytology brushings and FNA of regional lymph nodes. I believe I am staged at 3C as I have regional lymph node involvement as well as the tumor is encasing a vein. I also have a portal vein thrombosis. PET found no other obvious tumor sites.
I start chemo tomorrow at Johns Hopkins using the usual Gemcitabine and Cisplatin. The plan is to do three rounds and then rescan to see if there has been an effect on the tumor. I'm considered inoperable due to the location of the tumor ("very far down the tract") and the vein/artery involvement.
I have a very loving and supportive husband and family who are currently holding me together. My husband and I have three children ages 18, 12 and 10. I am 46 years old. I have spent the last three and half weeks being completely overwhelmed by the news. It's been hard to be positive.
Thanks for listening,