patzel
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unfortunately we’ve only got a copy of the CT from June.
I hope the other ones will be included in the file we have asked for.He went into hospital with abdominal pain, an exploratory showed a tumor in the liver and the cholangiocarcinoma was “detected” during the surgery.
Well, this is what the doctor told him but it seems (for me) hard to believe that this was the way it happened. One more reason why I can’t wait to go through all the files.PCL1029 wrote:Hi, Patzel,
May I ask how old is your boy friend?66
PCL1029 wrote:1. the Primary diagnosis
2. the Stage if possible (ie:T1N0M0)
3. Is the bone pain related to the primary diagnosis?(get a copy of the report)
4. the Ct scan report.(it will tell you a lot about your friend’s illness.),if you can ,insist to have a copy for yourself or boy friend for future understanding of the progression of the disease.)1. invasive cholangiocarcinoma treated by left hepatectomy
2. not included in documents which were made available to us
3. (bone) pain started 7 months after surgery (last CT was done 6 months after surgery)
4. doesn’t show evidence of local recurrence but some nodules in the lungs which were recommended to be checkedPerhaps someone from Scotland knows why doctors are so reluctant to hand out any documents to the patient? We were told that a request in writing needs to be sent to the hospital to get a copy of all relevant documents, so obviously it’s not enough when the patient asks for it when he’s actually present.
So far it is planned to continue with the treatment (apart from surgery there has been no further treatment so far) in Scotland also due to the language barrier. But if we are not convinced that everything which is necessary is done we might continue treatment in Germany which would then need to be private.I wish we knew whether intrahepatic or extrahepatic…
doctors haven’t told him anything, no explanations whatsoeverI do insist now on getting the complete patient files handed out including all existing images of CTs etc. to forward this to specialists I trust, these have been looking after my mum who got her cancer diagnosis and surgery 21 years ago and is doing absolutely fine.
Today there was a bone scan. Usually one gets the results within an hour already checked by a specialist (well that is private care and in Germany). But in his case: they are going to release him from hospital tomorrow morning telling him they “might” look at the images on Monday… he could ring in…in the meantime he was supplied (again) with painkillers
Sorry to say that but I think it’s an absolute disgrace. How come it’s not taken seriously and the results looked up straightaway?
