Another successful consult

I'm afraid I'm going to moan yet again.all visits to my onc are like something from a comedy.my daughter in law and I went in was asked how I was apart from my usual niggles I said and some breathlessness iv been ok.good well she says there are no ca125 results as they only do them once a month.my daughter in law about to self combust.its a bit of a wasted visit she says.when I had my bloods done on Monday I said I was seeing the onc on Thursday.i think common sense would have told me to ask the lab to check it.anyway as I'm only 6 weeks into my weekly treatment I felt it was something I should know.so now we have to a half hour trip to her other clinic on Monday to get the results of the blood taken yesterday.so out we come and I phone my daughter what were your scan results she asked.my daughter in law and I both knew there was something else.so she went back in and the receptionist said she'd get the onc to phone me.believe it or not she did.she said the liver lesion was larger and there was something on my lung so I surmised that is the cause of the breathlessness.we are going to discuss it on Monday.i don't know about anyone else but I think those results are quite major but it slipped her mind.if I didn't laugh I'd cry.regards carolyn

6 Replies

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  • How I feel for you Carolyn, you've had some tough news and this is on top of all the hassle of turning up for an appointment and no blood results. What sort of centre is it that does blood tests once a month?! Is there a specialist centre you can get to which is a bit more on the ball? We have enough to deal with without the added stress of this sort of experience and apparent disorganisation.

    I just hope you get a proper appointment and consultation when you will have some clarification of what's going on.

    Sending loads of love xx Annie

  • I'd ask to be referred elsewhere, the one thing I have learned with my on going NHS disaster is that you have to just complain about everything and then someone does something.

    What was the point of the the appointment if they aren't going to discuss your care. This system needs a major shake up. I've got oncology Monday and have started writing the list of what I want to know already lol.

    LA xx

  • I agree with Lily Ann, the whole health service is going to pot, every where. That was just ridiculous not giving you the scan results, what was the point of the consult. I was told my Avastin had stopped by oncology nurse , no explanation and it happened the day of my last scan. So my reply was how can you stop treatment when I am only going for the scan in a few minutes so you dont even have results. I am also back to onc on Monday with my list of questions. Carolyn, I would write a list of questions tomorrow and have them ready for Monday. I wish you both the best of luck

  • Thank you for your replies.i always thought our hospital was a good teaching hospital and had a good reputation I have to say I'm not so sure now.i know there are problems in the nhs but forgetting to give me my scan results and not making me aware that the ca125 is only done monthly is to me incompetence.its my family I feel for they want to know what's happening and I can't tell them because my onc to put it politely is a twit.iv been told she's knows all there is to know about ovarian cancer all I can say to that is if she's an expert I'd hate to meet the rest.iv taken your advice and have started to write everything down I want to say.so roll on Monday and hope her memory is in better working order.thank you again carolyn

  • I always call a few hours after my 125 blood test and ask for the results. My doctor's nurse has always shared this with me. I do not wait for the doctor's visit. Same with my scan results. I ask for a CD of my scan before I leave radiology. After getting my scan, I call back and pick up a copy of the report after the scan is read and the report is written. They won't give you any information over the phone. I don't wait for the doctor's appointment. They have never had a problem with giving me this information. I believe we are entitled to this information.

  • Yes, everyone is entitled to this information. You may sometimes have to put it in writing to ask for info from your file, but you are entitled to know everything about yourself that they have.

    I am a retired GP, as well as a cancer patient, and Itotally agree with you. I always ask for all my results. I can phone up and get CA125 results from the liaison nurse the next day, and get a copy of every CT scan report.

    Eileen x