My Ovacome
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False hopes

Went to see consultant about my scan results after two times previous seeing her under study I actually saw my own consultant I also ask her what to put on my benefit form as the last two scan results form the other doctor said I was clear of cancer so at the time I said are you sure as everything was stuck to my organs he said it was clear went away happy then I see my actual consultant this time it had never been clear and it's stable so I got false hopes I am putting in a report so no one else get involve in mix up and to make it clear that the consultant gets their facts right

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I know how you feel...I was ,I thought ,cancer free. All they were going by was my c 125. almost 6 yrs later I am told they didn't get it all. Now facing another bunch of chemo..and my bloods so low they can't do that....hanging in there...God bless

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Hiya bobby1,

I'm so sorry you've had this awful experience and I can appreciate how annoyed and shockedyou are and I think it's right that you report this. It's so wrong to give false information to patients on so many levels especially when you've asked direct questions and rightly expect direct and accurate answers. I imagine your consultant was embarrassed that you'd previously been given false information? I can't imagine your disappointment, you must be totally gutted.

I would speak to PALS at your hospital to make sure that future consults for yourself and others are truthful and accurate. I imagine you've lost faith in the doctor who told you untruths and won't have confidence if you have to see that doctor again. You'd really think they would understand how all news affects cancer patients both good and bad and that we need to know what's happening to us so we can deal with it in our own way moving forward.

Your benefit claim is reliant on you submitting the correct information and could be affected by what you've told them based on 'expert' opinions, if it is later found you've submitted false information you could be in trouble for something that's not your fault and out of your control.

I hope you're able to have some confidence in your medical team and the information you now have. I hope you remain stable or even better see positive changes in your status. Take lots of care, big hugs coming your way lovely ❤️Xx Jane

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Thank you so much big hugsxx

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Hi Bobby, I am so sorry to hear what has happened to you. We trust those that care for us & we don't expect them to let us down so badly. I hope your report goes as far as disciplining the consultant that made such a big mistake.

It clearly shows we have to be asking questions all the time & not take it for granted that the professionals get it right every time.

Please keep us up dated to what they will do next. Take care Cindyxx

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Thank you big hugsxx

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Hi Bobby. Im angry for you, what a blow. I do hope you can get answers as to why you have been misled and they dont do this to anyone else. Big hugs, Kathy xx

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Thank you I do also big hugsxx

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Bobbyo, Ask for a hard copy of the scan report. FYI, I always ask for paper copies of every single scan report, lab report, pathology report. That way you can read it yourself, ask any questions and your doctor/consultant is responsible for delivering ACCURATE information to you. Complain out loud and in writing and make a big stink, so this type of error is not allowed to perpetuate. FYI, I read the summary reports from each doctor visit. The number of serious mistakes is very startling. I had made the assumption that record keeping would be accurate. IT IS NOT.

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Thanks for your reply

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Hi Celia,

I'm so sorry and angry for you,we put our trust in these people and need accurate information.

I really hope you get the information you need and still go on enjoying life, we can't let it win, can we ?

Lots of love,

Carole xxx

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Thanks Carole still living my life luckily I was in Turkey before I got to see my actual consultant so I wipe it from my mind and enjoy it and celebrated our 45years marriage but I will not let the other consultant get away with it how are you and family hope everything well with you and family lovely hearing from you speak to you soonxx

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Hi Bobby, I am sorry you had this false hope too...what a blow for you. There is often a lack of communication in hospital which is not always encouraging. I've experienced it too and it's a little daunting.

I hope you get it sorted and voice your opioions do that it does not happen again.

Love Nicky x

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That must have been an awful shock to you and is really bad. Perhapss you could ask for copies of your scan results report and go through them with the. Dr at the appointment and then you can ask for an explanation of anything you don't understand

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Thank you for sharing your story, the good that will come out of it is immeasurable for the rest of us as well. WE really do have to be our own best advocate for our health.

Sad to say that we have to request these reports and review them ourselves so that we can question things that do not make sense to us or could cause us to be denied care/benefits.

Sure hope that the consultant and the understudy both learn valuable lessons and it sounds like while not clear but STABLE is still pretty good news overall. Wishing you the best of everything.

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I have been on a trial at UCLH was also told and had a letter to say I was in radiological remission, in August .

However after a PET scan it seems I have new tumours.

Battling to get my head around the news, it seems so totally unprofessional.

All the best

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