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Going round in circles.


Mkell
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Hi all, I'm new to the forum. Lost my mum to PC last April after the system failed to join the dots . After being diagnosed with reflux, then diabetes, then jaundice , and finally , too late, terminal PC. Shame. Shortly before she died, I got told that I'd got anenlarged pancreatic tail,and that I would need further investigation . I'm 53 year old, very physically fit, non smoker, non drinker, regular gym goer etcetc. My story began on Christmas Day 2015 when I got a sharp stabbing pain at the top of my abdomen, below the left ribcage. Fast forward to now. I've still got that pain, only now it's more intense, generally with me24 hrs a day. It's radiated through to the left of my spine and round my left ribcage. My original consultant, who turned up 3 hours late for my first procedure (colonoscopy), decided that I needed an MRI. 12 weeks after my scan I hadn't been given any results. This paved the way for all successive tests and results. I had a CT and an EUS, during which the anomaly on my pancreas was found. Someone told me that I had a 'lesion'on my pancreas-but nothing more. I was never told where I the pancreas it was, I was never told that-dependant upon the nature of the lesion, it could get worse, in fact Iwas never told anything else, other than, not to worry. The original information about my pancreatic disorder was disclosed to me over the phone by a nurse from the endoscopy dept. It wasn't her job to tell me, but she had happened to come across my results somehow, and taken advice from a doctor - not MY consultant, because he still hadn't looked at myscan results - too busy his secretary said. When I had my subsequent EUS, the doctor who did it, disagreed with my diagnosis of an enlarged pancreatic tail. I now had two hospitals in disagreement. One thing for sure - enlarged or not, I had a lesion. So, some 8 months into this, I finally get towed my consultant. He didn't have my file and simply said to me 'congratulations, the tumor is benign. I'm discharging you'. What tumor ? says I ..., He explains that owing to the fact that he doesn't have my file , he can't tell me. It's only because he's read something about it on a copy of a letter he saw, that he knows it's not benign. As far as he was concerned it's over. No mention of my ongoing and developing symptoms, no reference to my family history, no mention of further tests or follow up monitoring, no mention of what the lesion was or what it could become. What a nightmare. I requested a change of consultant. New consultant, now 10 months into this. She does endoscopy and discovers possible biliary reflux. Sucralfate prescribed Slight decrease in pain but it's still there. October 2016 things get worse and I call her secretary. I request another appointment. January 20th 2017 I see consultant again. She tells me that the lesion on my pancreas can't be the source of my ongoing pain because someone had told her 'it wasn't that kind of lesion' . I told her that I'd done some swatting as well as having spoken to nurses at PCUK. As far as I'm concerned, this lesion should have been properly explained to me. I'm still totally in the dark as to what it is, and if it's on my pancreas, it should be monitored. I finally got her to request a comparative CT scan - which I'm now waiting for. I'm at my wits end.

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Hello Mikel,


It sounds like you have had a very poor experience thus far and no one understands better than us what waiting and wondering is like.


You did the right thing in speaking to the nurses on here as they can help you to ask the right questions as a start. Have you been to see your GP? The GP is ultimately responsible for your health and should have copies of all test results and findings. He or she can explain the tests and findings to you and also continue to manage your symthoms. You can also discuss with her or him the issues you have with the two hospitals. Ideally you want to be with the hospital most skilled in dealing with your issues. The GP might also be able to suggest a private consultant if you feel that is the way to go.


I'm sorry you lost your Mum to this terrible and terminal cancer. It is hard to accept that when so many advances have been made in cancer treatments and outcomes that this remains such a tough nut to crack.


I hope you get some clarity soon


Best wishes, Marmalade

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