VERY CONFUSED???? NEED ANSWERS:(

Hi,

Im new to this site & need some answers. My Mother was diagnosed with a unresectable Klatskin tumor with Mats spread to nodes & diaphragm in Jan 2007, this only came about as she suddenly turned yellow. She had Private CT (I’m in UK) ECRP + Stent insertion at local NHS Hospital & they said she had a Klatskin tumor the size of a plum at the right & left bifucation of the heptic ducts & biospys samples taken. She also had laparoscopic surgrey to see if resection was suitable. Unfortunately it wasn’t & chemo & radiotherapy were not at all effective, so I sat there with my parents & listened to the words TERMINAL & a less than 12months survival prediction. Over the next few weeks Macmillan nurses were briefed & local cancer hospice informed. Mum made the disicion that she wanted to die at home & as a family we bravely agreed we would care as much as we could to carry out her last wishes. We were then told that the Macmillan nurses would help with pallative care. So as you can imagine we had some extremely sad months ahead, doing all the last holidays, birthdays etc. We remained hopefully as mum wasn’t in any kind of pain & came together as a family so much. Sadly this all took a terrible strain on my dad & on 1 of the hoildays July 2007 he had a car accident as he had a blood clot on the brain. His health seemed to deterioate from then. He so desperately used to search for articals in newspapers for cancer cure & tried every little tip going. Mum was 74 when diagnosed & dad was 77, they had been married since 1954 & were soul mates. That was 1 of the saddest 12 months spent. By Jan 2008 mum was still wasn’t experiencing any symptoms, jaudice had never returned & ca 19-9 were stable at 60-66 & mum felt absolutely fine, stent still in place & working well. Oncology simply resassured us & rebooked to see her in 3months which was the normal since intial diagnoses. As time started to pass each visit to oncology was the same , all was well no symptoms & CA19-9 gradually decreasing. I can remember every appt as mum would fret terribly a week before going incase they told her things were starting to happen, so each time her oncologist said All Good she was over the moon & kept thanking her lucky stars. She prayed every night & tried to live as good a life as she could, being told you are dying takes a terrible toll on someone, so each time we were grateful she was still here. 2 years after diagnoses & still all was well, I asked her oncologist if she should be rescanned to see how big the tumor was & to see what the Mats in her diaghragm were doing. He felt that while she was well it was best to leave her as she was & keep up with regulary Oncology appt. Life carried on & y this time my dad’s health got worse & meant he had to stop driving, he got worse after that & as mum was doing so well , it was almost as if she had to take a step backwards & as a family we started to help my dad , as by this time he needed care & mum was still fit & healthy & very well. Let now bring you to Feb 2011, Mum still here without any cancer treatment apart from intinial stent insertion in 2007, She started to feel very unwell & had an ear infection, after antibiotics she still didn recover very well & her GP did some blood tests , she was booked into hospital for stent replacement as her bloods were showing signs that the stent had blocked. This was 6th April & once stent had been replaced she bounced back to health, this was good as unfortunately although mum being the 1 with terminal cancer, my dad’s health was sadly getting worse. He went into hospital for camera down his throat to try & see why he wasn’t eating, they couldn’t find what was wrong & they did umpteen tests to try & find a cause, my dad sadly died on 16th May & had said to me a few days before “look after your mum with cancer” We were in bits & the last 6weeks since then has been a total blurr. My mum had an appt with the consultant who did the ERCP & replaced her stent. He then dropped 1 almighty bombshell ” I think your original diagnose of Cholangiocarinoma/klatskin tumor is clearly a mistake” He went on to say that “she in fact had a very large Common Bile Duct Stone stuck & a short sticture that was completely benign given the fact she was sitting in front of him 4 & half years after diagnoses & with CA19-9 levels of 40″ Omg!!! this was 39 days after my lovely father had passed & we were & are still gripped in the early stages of grief with that, now to have to listen to him say ” I can’t understand after 18months that you weren’t rechecked” A??? he then said ” I’m requesting this is investigated by the board & you are re-diagnosed” as it was clear to him it was CBD stones not cancer. I have since requested my mother’s GP notes & see her & my fathers GP were aware of this in April 4 weeks before my father died. If they had been honest as notes state pt is unaware she has large stone in CBD. 7 weeks tomorrow since dad left us & I have a 1000 questions, How did this happen & do they realise what pain my mother endured living her last months out as she wished, planning her funeral & watching her 2 daughters heart break& watched her grandchildren’s last christmas plays??? How can so many drs , surgeons get this wrong?? she was supposed to have had confirmation from biospies??? how can that be correct then?? CA19-9 now of 40 is within normal range??? we are awaiting an appt for a CT scan & no doubt things will become clearer. Im so sorry for my dad as he died still worried that his lovely wife was dying of cancer. Someone needs to answer some q,s here as at this very moment, we are a family grieving & now having to deal with a possible misdiagnoses:( Sorry its long but hopefully you might have some advice to give xx

Thank you x