Hi,
I have just been diagnosed with Essential thrombocythemia (ET), and am now on a waiting list for more tests.
I am so worried about the bone marrow test, is this done to check to see if you have leukaemia?
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I had BMB yesterday and god was it painful the worst pain I have ever experienced and I’ve broke me leg befor that was nothing to the pain I would insist on sedation and not just gas and air they will do sedation
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Hi @Shar.C I am so glad that you have found us, I expect you are in shock, I know I was when I was diagnosed
I am not a medical person, but I reckon it is normal to have more tests to get a better idea of your exact diagnosis.
You will find that there is a lot of waiting around and not knowing.
You will find a lot of completely varying feelings on having a bone marrow test and it can be done for a lot of reasons.
Now is your opportunity to write down all your fears, questions and practicalities for your next consultation.
I would say from experience to tell your medical team if you are anxious about any test you might have.
I was also diagnosed at this time of year and felt in a weird bubble with people celebrating around me,
The Blood Cancer UK support line is also there for you on 0808 2080 888
Really look after yourself and please do keep posting how you are getting on
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Hello @Shar.C - glad you have found us here - it’s good to touch base with others in similar situations isn’t it - and yes getting a diagnosis is not an easy thing and takes a while to adjust to so all you feel is very normal. I am an Essential thrombocythemia (ET) patient too diagnosed 18 years ago. It’s very normal to have a BMB as part of the diagnosis process of Essential thrombocythemia (ET) as the bone marrow sample gives your consultant a picture of your bone marrow and how the Essential thrombocythemia (ET) is showing itself in it in the same way as an X-ray would show details of an injury - so you are having the usual bits done to help your consultant look after you well going forward. I have had quite a few BMBs over the years and it’s ok - the dept will look after you, it’s soon done and they can offer you some pain assistance if you would like it - I have always been well looked after during the procedure - and I have benefited from having a friend come with me for it. Keep us posted how you get on
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Hi @Shar.C.
It’s very normal to have bone marrow test as lots of us on here will know.
I think the procedure is different for every one of us which makes it difficult to comment on how you will feel.
I was offered sedation but didn’t take it. What helped me the most was having somebody with me to support me through.
I can reassure you that the staff really look after you and explain everything in detail. If you have questions and are feeling anxious make sure you discuss this with them so that you have all the info you need.
Please let us know how you get on.
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Hello there @Shar.C, welcome to the forum, although I’m sorry you had reason to find it. I’m especially sorry to read of your diagnosis with Essential thrombocythemia (ET). Last year I was diagnosed with a very similar Myeloproliferative neoplasms (MPN) called Polycythaemia vera (PV) so I have an idea of the diagnostic tests you’re undergoing and I imagine you’re feeling pretty anxious right now. Understandably!
Like others have said, the bone marrow biopsy is to help decide on your diagnosis at the blood cell level—our blood cells at their source of production might show more aspects of Essential thrombocythemia (ET) or Polycythaemia vera (PV) or indeed other Myeloproliferative neoplasms (MPN). My BMB passed uneventfully but I was pretty anxious about pain beforehand and was anaesthetised. I’d say just ask for that and have a loved one go with you in case you’re a bit wobbly on your feet afterwards. The good news is you’ll probably only need the BMB doing once.
Perhaps you’d like to read some of the Blood Cancer UK information on Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
And here’s some other information about the BMB: Blood cancer tests | Blood Cancer UK
Hope the BMB goes really well for you @Shar.C and try not to worry as it’ll be over with soon enough and then you’ll have more information that’ll help your treatment. Do please let us know how it goes.
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Hi Shar.c
I was diagnosed earlier this year and just had a BMB. S**t did that hurt! Was refused sedation and couldn’t walk out of the hospital!!! They will offer you gas and air.
Be prepared for a few weeks of discomfort.
My consultant wanted a baseline so they knew where we were and then when they do another one in hopefully a good few years time they can understand it more.
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I agree!!! I was refused sedation!!! Just grin and bear it I was told or you can have gas and air!
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They check to see if you have any other Myeloproliferative Disorders as a bone marrow test is the confirmation of this.
Bone marrow biopsy is very unpleasant and a strange sensation but wouldn’t say it’s painful. More uncomfortable. But as Erica said everyone is different. I had gas and air for both of mine and found it was enough to take the edge off. The good thing it’s over in about 30 seconds. The first part is preparation but the actual biopsy part is about 30 seconds
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Hello @Shar.C
Sorry to read about your new Essential thrombocythemia (ET) diagnosis, I’m glad you have found the Forum though. Hopefully you will get some support and tips from others.
It’s understandable and very common to be worried about having a bone marrow biopsy, as you already have an Essential thrombocythemia (ET) diagnosis, it’s probably being done to get some specific information. A bone marrow biopsy is used to have a ‘closer look’ at the blood cell ‘factory’, as all blood cells are made in the bone marrow. The biopsy sample is used in different ways, and many tests can be done from this, depending on what the laboratory/Haematologist are looking for. Usually leukaemia is detected in the blood from your arm, but specific genetics, stages or type can be determined from a biopsy sample. Do ask the person taking the biopsy what it is they are testing for, it will be written on the request form.
The back of the pelvis is used to take a biopsy sample, as it’s easy to get to, and has a lot of marrow there. In regards to what this will be like is very individual, it shouldn’t be painful, but can be uncomfortable. Everyone experiences or describes it differently, but you should be offered gas and air, which if used properly can be extremely helpful. Most hospitals only sedate children, but you can ask for a sedative tablet to take about an hour before, just to relax you. You will have a lot of local anaesthetic in the area they take the biopsy from.
It’s really important to say if you are anxious about the procedure, as they can best support you then. If you’re worried about why they are doing the biopsy, do ask for more information on that too.
Take someone with you if you need to, they might not be allowed in the room for the biopsy, but you’ll have the reassurance before and after of their support.
Take care and let us know how things go. Heidi.
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I was diagnosed with essential thrombocyemia about 4 years ago and did not have to have a bone marrow test. Hope you don’t have to either.
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Hello there @Sue54, welcome to the forum. I’m sorry to read that you were diagnosed with Essential thrombocythemia (ET) but very glad you’re here a few years later to share your experiences.
I’m surprised you never had a bone marrow biopsy though. After having a BMB and aspiration myself I read that they’re the main diagnostic test for confirming Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET) and Polycythaemia vera (PV) (which I live with). Perhaps you’re relieved not to have had a BMB considering how many people around the forum found them painful!
Anyway, I hope you find the forum helpful and continue to share your experiences @Sue54.
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Hi @Sue54 a great big welcome to our forum, i am glad you have found us at fast.
Thanks for sharing your experiences and you show that everyone’s experiences are individual.
People often say the same to me, I have never had a bone marrow biopsy with my blood cancer either
I look forward to hearing more from you,
Really look after yourself
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Thank you for your welcome. It’s good to share our experiences with each other.
Wishing everyone a Happy Christmas and a healthy New Year for us all.
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Hi @Sue54 wishing you the same!!!
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