Bone Marrow Biopsy

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Good afternoon,

I am not sure if this is acceptable to post on here or not. If not please remove. I have drafted this following my own painful biopsy so that in future, should I need a second, I can refer to this so I can discuss with my Consultant and the person performing the biopsy.

Bone Marrow Biopsy – Patient Request Note

I previously had a bone marrow biopsy/aspirate that was extremely painful, particularly during the aspiration and the injection onto the bone surface. I would be very grateful if the following could be considered to improve comfort during any future procedure:

1. Pain control / sedation

  • I would like to discuss the option of sedation (oral or IV) in addition to local anesthetic (e.g. lidocaine).

2. Local anesthetic technique

  • Please inject the anesthetic slowly and in stages, including careful numbing of the bone surface (periosteum).

  • If possible, allow adequate time for the anesthetic to take effect before proceeding.

3. Aspirate technique

  • I would prefer one short, quick aspirate attempt if feasible.

  • If the aspirate appears difficult or very painful, I would be happy for the procedure to rely on the core biopsy instead.

4. Limiting discomfort

  • If pain becomes severe or continuous, I would like to request that the aspirate be stopped. Agree a stop sign - ie raised hand.

5. Operator and communication

  • If possible, I would prefer an experienced operator.

  • Please let me know just before key steps (especially aspiration), and give me a few moments so I can prepare.

Thank you for taking this into account. I appreciate your help in making the procedure as comfortable as possible.

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Hi @meljarv

Not aware that there would be any reason to not share what you have and it all appears reasonable from my non medical perspective.

One technique you may want to try is framing what you would like to happen as a request or series of requests.

Hope that helps

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I suspect the key point is point 5. I’ve only had 1 bone marrow biopsy with 2 insertion and it was virtually painless with no real discomfort when I got home either. I’m sedation was key with 2 separate injections, one in the general area, the other in the bone. That last one was slightly painful but must have been effective for the main procedure.

I’m sorry you had a bad experience and I think its good to lay down what you have done for the next time.

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Thank you.

My aspirate was difficult, all I ended up giving was an extremely painful blood sample! I also had to have 2 bone biopsies as he made a mess of the first.

I am not medical but I have read that when they do the deeper infiltration injection too quickly, that can be painful. That’s why I have said slowly at point 2.

Mel

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Hi Duncan B,

How are you getting on?

I am in a much better place now. I did think to frame my requests as you said but if there is a next time I want to feel more in control.

I ended up only giving a blood sample! No marrow aspirated. I had to have 2 bone biopsies as he made a mess of the first.

All the best

Mel

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Hi @meljarv

I’m doing well at present thank you.

Not sure if it’s your first bone marrow biopsy.

I remember the first one being the most challenging but definitely better after that. Pretty sure it took a few attempts to get the trephine sample. The Nurse Practitioner who did it very experienced.

Think that if they massage the area they are taking sample from it definitely helps.

Take care

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Hi @meljarv please don’t worry, you’re welcome to share this here. You’re not offering anyone else medical advice.

I hope it gives you more confidence going into any future procedure (I know I would have loved something like this in my bone marrow biopsies). Our information on bone marrow biopsies might also be worth a look if you haven’t come across it - it confirms that pain does vary considerably from person to person, and that sedation and gas and air are options worth discussing with your team in advance.

Take care,

Ceri - Blood Cancer UK Support Services

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Hi DuncanB,

I just wanted to let you know that I have been working on a standard operating procedure for bone marrow biopsies. I handed it to my Consultant yesterday and he seemed genuinely impressed with it. I included a section on pain management and included deep breathing as you mentioned that this really helped you during your many BMBs. So if you have to have another BMB, which I hope you don’t, and the support workers mention breathing deeply, just know you have made a difference and your advice is helping others.

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Thanks @meljarv

What you have done with the protocol that you’ve shared with your Consultant sounds fantastic.

The Deep Breathing tip I mentioned actually came from the Advanced Nurse Practitioner at Raigmore Hospital who does the Bone Marrow Biopsies

I’ve had about 10 Bone Marrow Biopsies since first diagnosed and if I don’t need anymore soon that’s a positive sign

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Hi DuncanB,

I hope that tip about deep breathing helps others.

Hopefully neither of us will have to go through another bone marrow biopsy again.

Just thought I would mention, I obtained a copy of my medical records from the hospital. One record mentioned that I had mild fibrosis. After much research I have found out that fibrosis makes bone marrow sticky so an aspiration was always going to be painful, they wouldn’t have known that before the biopsy. Blood will then flow better than marrow and it’s one of the reasons why there was only blood; the samples were dilute. There was not enough marrow for the lab to assess. That’s why my note says one quick put because an experienced operator would know instantly if only blood was being aspirated. They assessed my results from the bone samples as there is marrow between the layers of bone. I am finding it all very interesting.

I put one report (it was only about a page long) through chat gbt, that was a revelation, it didn’t diagnose my condition but it gave me an insight in to what the tests are for and more of the why and what they are looking for.

Best wishes

Mel

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Sounds like you have enjoyed doing some research @meljarv

Enjoy your weekend

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I had a failed Bone Marrow Biopsy yesterday :frowning:

The physician assistant who did it, did not explain to me what he was doing, the tapping was extremely painful despite local anaesthetic and unfortunately I passed out from the pain and he couldn’t continue - he only got the aspirate needle to the surface of the bone but the tapping was absolutely horrendous, I couldn’t cope with the pain.

I now have to go back again next week for the procedure to be done under sedation. Does anyone have any experience of how it feels under sedation? Will I feel it?

Thanks in advance x

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Hi Victoria,

I had a very painful bone marrow biopsy, and my doctor treated me exactly as your operator did you. There are standard operating procedures for carrying out BMB’s but no information or guidance if the procedure proves difficult as yours sounded. Since then I have been looking into various options just in case I have to have another. First you need to find out what they mean by sedation. Do they mean Entonox gas? A tablet to relax you? Or introvenous sedation to put you to sleep? They generally do not offer going to theatre but that is an option. You will have to insist though and they will try everything to change your mind. They will be spitting feathers but doctors have a duty to treat you so they will eventually relented.
I have also posted on the blood cancer website a note that patients can show their consultant, or operator. It is on this website under bone marrow biopsy. I will try to send you a link tomorrow.

Mel

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Hi I just want to add that it can feel very isolating and scary having a painful bone marrow biopsy, so I know what you are going through, there doesn’t seem to be any support. I had a few people on here very helpful.

if you would like to discuss further, just message me.

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Hello again @victoriaelizabethalice, I am so sorry to read of how painful your bone marrow biopsy (BMB) was yesterday, and they didn’t even get the samples! Dear me, I hope the pain has passed today.

I wasn’t sedated for my BMB but had the area of my lower back where they went in heavily anaesthetised with injected Lidocaine and I didn’t any feel pain, per se. More a sensitivity like with the tugging and wiggling of having a tooth pulled. So I am wincing especially now just thinking of how yours was, sounds grim :persevering_face:

Anyway, here is the Blood Cancer UK information about BMBs, and here is a thread of other forum members talking about their experiences of having BMBs, including sedation, which may be of interest: First Bone Marrow Biopsy

I’d really suggest giving the Blood Cancer UK specialist nurses a call as they can offer medical advice and suggestions regarding your BMB. Their free number is 0808 2080 888.

Do look further around the forum using the search box at the top as you’ll find many other members have talked about BMBs, and not always so painful as yours.

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The note you kindly shared @meljarv is at the top of this thread if you scroll up or follow this red link: Bone Marrow Biopsy

Thank you for supporting Victoria, and I’m sorry you also had a painful BMB. Your great ideas for what to ask and check when having a BMB will be useful, I’m sure. Glad too that you found the forum helpful! How are you getting on since that ordeal, may I ask?

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Hi Duncan,

Lovely to hear from you. I hope all is good with you.

I am fine, after all the investigations and painful bone marrow biopsy they cannot find anything wrong, which is a good thing however I am having horrible flash backs which is causing me issues and am now on medication for. I want to thank you for messaging me, I was in quite a dark place and you and others who messaged me really helped.

I have a meeting with the area health board regarding my complaint on 10th June. It’s taken this long to get to this point. I am hoping it will answer some question I have so I am able to put all this upset behind me.

Mel

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Oh @meljarv, I really empathise with how flashbacks can feel and it’s great you’re having treatment for those. I’m so sorry you’ve been going through that. Knowing that something I shared here helped you in some way has really made my day! So glad that those dark days you mentioned were in the past-tense. I am well, thank you for asking.

May I congratulate you on not finding anything wrong after all the testing, that’s got to be the best news! So no blood disorders and you won’t need treatments? Perhaps a dream come true—if not for that horrible BMB.

Let us know how it goes with the health board, I hope it brings some sort of resolution for you. Perhaps being free of a blood disorder can be its own sort of best-case resolution to all this? Thinking of you @meljarv, I hope the dark days stay in the past!

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Hi @victoriaelizabethalice, I’m so sorry, that sounds awful. Passing out from pain during a procedure you weren’t properly prepared for is a really distressing experience, and I don’t blame you for wanting to understand more about what happens next and what’s involved.

Having it done under sedation should make a significant difference - you’ll have much more support around the pain, and the team will be better placed to look after you throughout. I’m hoping some of our members who’ve had their biopsy under sedation will feel able to share what it was like for them. In the meantime, I can see that @Duncan has shared some very useful links (thank you!).

I’m not sure which hospital’s care you are under, but have they provided you with any information about the procedure? You may be able to request it.

And to echo what has been said, our support line is also there if you’d like to talk things through - it’s staffed by our fab blood cancer nurses, who will be able to offer medically-informed advice. They’re on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.

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Hello @meljarv, it’s good to hear there’s nothing medically wrong after everything you’ve been through, and I’m really glad the support from people here made a difference when you were in a dark place.

I wanted to pop in to say that flashbacks after a traumatic medical procedure are more common than people realise, and to ask if you’re getting any support (other than the wonderful forum community) around that? Our mind and emotions page might be worth a look alongside what you already have in place - just in case there’s anything useful in there.

I hope the meeting on the 10th gives you some of the answers you need. Please do keep us posted.

Take care,

Ceri - Blood Cancer UK Support Services

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