Hi everyone,

So pleased to search Ampullary Carcinoma (initially to do what all do and probably shouldn’t - search the internet to research the diagnosis) and find this support!

My diagnosis was confirmed yesterday (after 3 weeks of various procedures, consultant head scratching and lots of driving  the wrong way up one way streets). I have to wait 6 weeks for the next available theatre slot  before my operation can take place. 

From reading some of your posts we seem to share the same symptoms - some more manageable than others! OMG the itching!!! I can only describe it as a frenzy where you just want to rip your skin off. while writhing around in a deranged panic I have scratched and scraped at my skin until my body bleeds leaving deep wounds and scarring. The only way I have ‘managed’ this is with Chlorphenamine tablets, tepid showers, wrapping myself in wet towels and copious amounts of Aquious cream. Cotton gloves and cooling mat have been by far the vest investment I have made in the strive to control this malicious side effect.

My road to diagnosis like so many others was complicated by its rarity and was discovered almost by chance. If I hadn’t been so insistent on not leaving the hospital without a diagnosis I would have been sent home on at least 4 occasions to wait for the jaundice to disappear. With a billarubin count at its highest 374 and rarely dropping below 250’s I fail to see how the jaundice would subside.

The hospital consultants were convinced that there were gall stones in the blue duct but after 3 ERCP’s, MRI, Ultrasound and CT scans with two different stents being fitted this was proven not to be the case. With only a dilated bile duct to go on the consultants were at a loss and it was clear they had no idea what to do next as the radiographer refused to consider a liver biopsy.

Finally at a round the table meeting of specialists a consultant put the pieces of the puzzle together and confirmed the diagnosis from a tissue sample taken at he time of the first ERCP. This had not been referred to throughout my outpatient appointments or my impatient experience.

I have accepted the diagnosis and I’m keen to stay fit and healthy to enable the operation to proceed as planned but I’m going to struggle with the wait!!

I have read the various articles on the internet and I too am left wondering about the future prognosis and find it difficult to answer my  children’s questions. Obviously they want to want to know and I’d like to plan ahead to ensure I get the most out of my future post op. The articles do not appear to extend to documentation past the five year mark and I wonder if anyone has found information past this point?? I appreciate our recoveries are individual and depend on so many factors. This is by far the hardest part of the diagnosis to comprehend. 

I have a fantastic support network of family and friends  and I appreciate that this illness affects everyone in our lives but sometimes it helps to talk to people who are or have been going through it. Sending positive thoughts to everyone going through the various stages of diagnosis and treatment. 

Thank you for sharing your insights x