Bone marrow biopsies.
A hot topic at patient forums – online and in-person – and the three words that cause anxiety in many as soon as they’re spoken.
Do we need a biopsy to confirm an MPN diagnosis?
When should we have one?
What do they tell us that blood counts don’t reveal?
And how painful are they really?
All questions that come up time and again when discussing MPNs with patients, nurses, and consultants.
It’s for these reasons, and more, that for this month’s blog I’ve decided to do a ‘day in the life’, documenting my recent experience of having a bone marrow biopsy – for the very first time – in March this year. Whilst it’s fresh in my memory, I thought it was the perfect opportunity to put pen to paper and describe what it was like for me. Not to suggest that everyone’s biopsy experience is or will be like mine, nor to imply that this is the definitive guide to getting one. Rather, I wanted to share my story to provide an account of a positive experience that might offer some reassurance if you’re thinking about, or scheduled to have one soon too.
And before you stop reading, I don’t go into intricate detail so it shouldn’t put you off your cereal if you’re reading this at the breakfast table!
Monday 28th March 2022
Tomorrow is the day of my first in-person consultation at Guy’s Hospital in London for 2 ¼ years – and crucially, the date of my first ever bone marrow biopsy.
Up until now, I was feeling quite relaxed about the impending procedure. Reassuring (or perhaps kidding?) myself that it couldn’t be more painful than the migraines and neuropathic pain I’d experienced previously.
I knew from attending MPN Voice forums and reading patients’ stories on HealthUnlocked over the last few years that there are a range of experiences and opinions about biopsies – but I also knew that, unfortunately, they tended towards the painful end of the spectrum.
Over the previous week, I’ve consciously avoided any information about what exactly the biopsy entails, aware of their potential to make me feel nervous. As is so often the case, however, I’ve just caved in – at 8pm the night before – and watched a short video of what to expect on the NHS website.
Very informative and helpful, but also slightly worrying at the length of the needle illustrated…
‘Oh dear’, I thought. ‘Maybe I have been mistakenly downplaying this’.
I should say that the rationale for getting a biopsy at this particular moment in time is to get a baseline for the future. You might recall from previous blog posts that I’d had a red blood cell mass test when I was diagnosed 6 years ago, which definitively told my consultant that I had ET rather the previously suspected PV. During the Covid-19 pandemic, the onset of neuropathic pain and continued other symptoms means that we are now thinking about a possible trial of treatment to see whether it improves my symptom burden.
I knew that before going on treatment, I really wanted to have a biopsy taken so we had a record of what it looked like. This would provide a timestamp for the future, and I am genuinely interested in what my marrow looks like down the microscope – particularly because of the initial ambiguity over whether I had ET or PV, and my relatively high number of symptoms.
With that in mind, I go to bed knowing that tomorrow is the ‘Big Biopsy Day’.
Tuesday 29th March 2022
Today’s the day.
In some ways, a relief it’s finally here.
A bit like exams knowing there’s nothing more you can do and consoling yourself that if you don’t know it now, you will never will.
It’s a frosty morning, but not so cold that there’s ice on the car windows. We jump in my dad’s car, ready for the long drive to London, and the engine doesn’t start.
My dad turns the key in the ignition again.
No signs of life.
The battery’s gone flat.
Panicking, we unload the car and move our belongings into my car.
I turn the ignition, mine doesn’t start either.
How is this possible? They were absolutely fine yesterday.
Seriously panicking, we try my mum’s car.
Hallelujah, this one works!
But the car we were initially going to travel in is now in the way and, it turns out, too heavy for us (along with two of our neighbours, who have kindly spotted our difficulties and come to help) to roll off the drive.
The neighbour’s jump leads come out and after 15 minutes it sparks into life just enough for us to reverse it out of the way.
With our belongings repacked into the third vehicle of the morning, we set off.
Not an ideal start to ‘Biopsy Day’ it has to be said.
We arrive at the Tabard Annexe of Guy’s Hospital with 5 minutes (genuinely, 5 minutes) to spare before my allotted appointment time.
If we don’t look frazzled, it’s a minor miracle.
I have my usual set of blood tests taken and we sit in the waiting room, grateful to have made it after this morning’s dramas, until I’m called for my consultation. Afterwards, we emerge to have our lunch outside before making our way up to the haematology day unit where my biopsy is set to take place.
The clock ticks ever nearer.
There’s a slight delay.
The receptionist kindly explains that the doctor who was originally set to do my biopsy is no longer able to and so the new doctor, who’s taking over, is on their way.
I stand with my mum outside the day unit due to the new Covid protocols. It feels strange to see the empty chairs in the usual waiting area, normally full of patients and bustling with doctors and nurses coming in and out of their consulting rooms.
In the corridor, porters pass us pushing trolleys and carrying parcels. It’s at this moment, standing outside waiting, that I start to feel nervous.
I think back to all the previous conversations, anecdotes, and testimonies I’ve heard about the infamous bone marrow biopsy, but I know there’s no going back now. I remind myself that I signed up to this, even willingly proposed it, so there’s no option but to ‘keep calm and carry on’. Or whatever the novelty mugs say these days.
I get out my phone and scroll through the lovely email I received yesterday from another ET patient kindly wishing me luck, and a text from a friend saying they’re thinking about me today, and I feel marginally better.
As soon as the door opens and the doctor pops his head out to call me in, I instantly feel okay. He’s so nice and friendly, and allows my mum to come in too.
He takes us to the room, chatting away, and I no longer feel the dread I felt in the corridor moments before.
Once we sit down, the doctor goes over my patient history and explains the procedure.
Before I know it, I’m lying on my left side with my knees up towards my chest and facing the wall. The doctor presses my back and hip bone to determine where to insert the needle, all the while checking to see how I am and talking me through what exactly he’s doing.
I really appreciate this continuous dialogue and commentary and feel reassured that he knows exactly what he’s doing.
The one person I feel sorry for is my mum with a premier, front row view!
The doctor injects local anaesthetic and over the next few minutes, he asks whether it feels numb and how much I can sense.
I won’t go into much more detail – partly because I honestly couldn’t feel much for most of it – but the only painful part was at the very beginning, when he inserted the initial needle into the hip bone.
The rest was okay. Genuinely. I wasn’t in any pain. A little uncomfortable, but no more so than you’d imagine, and every sensation was extremely dulled because of the local anaesthetic.
At one point, he said I’d feel a slight ‘tugging’ as he drew out the bone marrow and although this was a bit of a wrestle, it wasn’t painful. Just quite bizarre!
All the while he was chatting away and putting me at ease.
Whether the same can be said of my mum, watching the entire thing in real time, I can’t be sure!
The doctor puts a dressing over the wound and I unfurl from my crouched position on the bed.
I ask to see the sample he’d taken and am shocked to see a little worm-like thing floating in the pot. It looks very odd and I can’t quite believe that’s what our bone marrow looks like!
He puts it on a tray, next to a number of blood film samples, and leaves us to recover from the experience.
After 20 minutes, a nurse popped in to check my wound wasn’t bleeding, and she said we were now free to leave.
With two appointments down, the only thing left is an ultrasound scan at 5pm.
We amble out to the King’s College garden and are grateful for the fresh air.
It definitely feels good to have that behind us, but am reassured that it wasn’t anywhere near as bad as expected.
Friday 13th May
The appointment to get my results is coming up and I can see that the recent MPN Voice patient forum (from May 6th) has been uploaded to YouTube.
Sat at my computer, I watch a fantastic talk (starting at 31 minutes in, if you’re interested in watching it) by Dr Anna Green, a consultant haematopathologist from Guy’s and St Thomas’, about bone marrow biopsies and MPNs.
Dr Green’s lecture is incredibly informative and very clearly explained, and I’d highly recommend it for anyone interested in knowing more about her first-hand experiences of gazing down the microscope and analysing the different bone marrow characteristics of each MPN.
Her slides include some amazing and brightly coloured photos of the bone marrow and it’s fascinating, if slightly alarming, to see ‘normal’ samples compared with those taken in ET, PV, and MF patients.
A key takeaway is the dilemmas in practice of precisely labelling and neatly mapping bone marrow samples onto the World Health Organisation diagnostic criteria for each of the three MPNs. There seems to be consensus among the panellists running the forum of there being more of a spectrum of MPNs than the current classification framework allows for.
I jot down some questions in my notebook ahead of my consultation, ready to take with me to my upcoming appointment at Guy’s.
The talk finishes and it feels strange to think Dr Green and her colleagues may have been examining my bone marrow.
I am intrigued, and naturally apprehensive, to know what they have found.
If you’d like to get in touch with Alice about this topic or any of her previous blog posts, you can contact her by email at: firstname.lastname@example.org
You can watch MPN Voice’s recent online patient forum from May 6th on the charity’s YouTube channel here: MPN Voice patients’ ‘virtual’ forum – 06 May 22 – YouTube