i have been waiting since august 17 to be diagnosed.

I have had 2 spinal bonemarrow biopsy a pelvis biopsy MRI scan pet scan bone scans and they still haven't diagnosed me I am getting fed up all the specialist nurses keep telling me is they have to get it right before they can start treatment. I was originally told I have a cracked s1 disk then they said I have a tumour on my spine, they told me the pet scan was clear then another nurse said it was not I am loosing faith please can someone tell me if this is correct t way to get diagnosed they think it is b cell non Hodgkin's lythoma but not sure.

  • Hi William, welcome to the forum that none of us choose to be a member of, but so glad its' here for support for us. All of us either have cancer ourselves, or are caring for a loved one with it. It sounds like you are being shuffled from one treatment person to another, but no one is talking to one another, and certainly, it looks like none of them are talking to you either. Who initially referred you for screening, and if this was your family doctor, he/she needs to get on the ball and coordinate these services. I would think that after almost 3 months, someone should be sitting down with you and giving you some kind of explanation for what they do know thus far. Your family doctor would be the first place to start I would think, so try that. Come back on to the forum and let us know what your find out. You deserve some kind of explanation at this point.

    Take care.

    Lorraine 

  • Hi Lorraine

    Sorry I havent got back to you I have now been told that I am being referee to mount Vernon as they are more specialist to treat me I told them they are passing the buck the second opinion came back from stanmore as incon clusive so I think they are freighted to treat me , I am having an echoed scan today then waiting for mount Vernon to call me then hopefully start treatment, when I asked the MacMillan nurse why she said it was because of my mobility I was on crutches she said they don't have the room for people with mobility problems load of crap sorry. Starting to feel very dispondent and my mood is very low feel like I have been pushed aside at the end of the day I would rather be treated by mount Vernon, I just feel 3 months down the line is to long being pushed from hospitals I just want to get on with it they told me after all this I will have R-chop chemo and radiation hopefully I should hear from them this week its all the waiting that does me in I know they say this is normal but not 3 months thankyou for your previous reply and I hope you are well .Tracey .