[hazeParticipant]

Please can anyone advise me. I can see from the forum threads that we all find waiting for results difficult. I was recently diagnosed with smouldering myeloma after a GP blood test which triggered a hospital referral. The paraprotein, immunoglobin and light chain results all appeared on patients knows best 3 days after my test. I am on watch and wait with 3 month testing. My last blood result has a 4 week block on patients knows best and my haematologist told me my results are ” stable” but refuses to give me any figures. Is this what any of you have experienced? Is this a national hospital trust policy?

[blobgobParticipant]

@haze

Why not give the Myeloma Infoline a call? As suggested on the Forum Home Page.

Should you wish to discuss current treatments and care pathways you can contact the Myeloma Infoline on 0800 980 3332.

[graham-cParticipant]

The truth is that you are legally entitled to know your results. There ARE rare circumstances in which they may withhold them but it’s unlikely to apply to you.

Look up the hospital on the internet where you gave your blood test and search for ‘Subject Access Request’ and it will tell you how to apply. It’s a simple free letter you send and the hospital is legally obliged to provide the information requested.

It’s something I have done many times. I was MGUS for over 10 years and, to be fair, most times I was told the results. I kept a spreadsheet and it was reassuring. Very recently I noticed something the hospital hadn’t picked up and I’m now deluged with hospital appointments. Almost inevitably it’s amyloidosis.

Do it once or twice and they’ll realise it’s easier to give you the results in the first instance.

[hazeParticipant]

Thank you Graham for taking the trouble to reply. It is very helpful. I called the Myeloma info line who tell me it unusual practice. They suggested I contact Pals which I have and am awaiting a response

[Author]

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