Hi All. I have ET, and I had a bone marrow biopsy in June. I haven't had the formal results back in a letter from my consultant. The GP told me there was a note that said confirm ET but he didn't understand the rest of the results (literally what he said). I had my regular blood check up with the consultant today so I hadn't bothered to chase the biopsy result. My consultant wasn't there today so I had a locum. A locum that I have a dislike towards as she told me about my diagnosis by scribbling the condition on a bit of paper, handing me a Macmillan card and telling me to use google, so I may not be the most rational when it comes to this person.
Anyway, the meeting with her was over in a minute and all I got was, you have some fibrosis but it hasn't been grades so I can't tell you anything, 14 genes have been looked at, then rambled about probably not taking interferon as that can be bad for fibrosis. I'm completely lost on how to get my results and what I need to know from them and what is an issue and what isn't. I'm 32 so freak out about this a lot as its a long road ahead, and new to me, whereas this locum's attitude is you are 32 go away.
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You have a legal right to everything in your record, You need to ask for a copy if the BMB results. It sounds like your GP has access. Perhaps ask that doc for a copy.
Sounds like contact with the locum doc is a waste of time, No need to bother with that contact. Since the interferons are a med that can help prevent progression, not sure what she was rambling on about. Best to review your BMB results with a MPN Specialist (not just a regular hematologist). Here is a list just in case you have not seen it recently.
thanks hunter. I went and fought for the gp to print them off and the conclusion is written terribly but I think they say that I present as pre-fibrotic MF rather than ET, not what the consultant told me which was that I have more fibrosis than ET, but maybe that ends up being the same thing
I think more fibrosis than ET means Pre-fibrotic MF. At least that is how I would interpret it. I would definitely seek a second opinion from a MPN Specialist.
I have been told I have ET by 2 hematologists and an MPN specialist . My bone marrow biopsy concluded I have 1+ Reticulum Fibrosis. I does cause me concern at times but I have only been diagnosed in 2021 so for now I am going with ET until….
after reading my results it looks like I was graded as reticulum g1. I am now just annoyed that I had read this with 0 medical training and the locum didn’t even read the whole report. My platelets are on the low side at the moment so I know day to day I’m ok for now, but I have 0 faith I’m getting the right answers
you definitely need to ask for a second opinion with mpn specialist I had very similar treatment to you at the beginning I had to argue and fight for what I have today I was told you have 2 years there’s nothing we can do I was 24 and had primary mf iam now under st guys have a team that care for me I get copies of all my medical information ask to be copied into go letters you get a letter after every appointment iam 37 now and still here my case is complicated but iam hoping one day to have stem cell treatment you have speak up especially now since covid best of luck sweet
if I were you I would phone your consultant’s secretary and find out when he/she will be back. Tell her your concerns and ask her to get your consultant to call you. Most have no problem doing that. Good luck
I am so sorry you had to experience that, that locum was just plain rude. As a formerly young mpn patient drs often dont quite know what to do with us, and lack of experience navigating the health system can hinder us too, so please speak up for yourself , which i know is hard , but a skill definitely worth acquiring .
I whole heartedly agree with Jilly above ring the consultant's secretary and explain what happened ,that you need clarification of your results , they are quite often the quickest way to achieve things . Also if you have a specialist nurse , they are usually a good source of real world knowledge , as is this forum , i wish i had it 20 years ago
Sounds like the locum is full of rubbish. Interferons like peg can help long term prognosis. I email or phone my haematologist secretary and she sends me my results. You are definitely entitled to them. So annoying to hear you have been treated like this😞
I am sorry that you had such a bad experience getting the results of your BMB. I would advise you to contact the haematology nurse specialists in the hospital, and ask them to explain the result to you, tell them about the consultation you had with the locum and how the result was presented to you and that you are, understandably upset and confused as to what the result means for you. Best wishes, Maz
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