I feel like a bit of a fraud being here. I have been seeing my haematologist since late 2019 and he has been referring me to different medical departments to rule out anything else that could be causing my irregular blood tests (I have had a colonoscopy, scan of my uterus and I am waiting for results from a blood test for any autoimmune diseases). So far, my results are only getting worse or remaining just out of bonds (platelets, MCV, blood film, c reactive protein, ESR, MCV, MCH, MCHC, ferritin, globulin, Gamma GT and Immunoglobulin A/M).
After the last set of results, he sent a letter to my GP that ending with this: “this is likely to represent a mild early myeloproliferative disorder. Teresa is unkeen for a bone marrow biopsy and in fact a bone marrow biopsy whilst it might help distinguish between early primary myelofibrosis and essential thrombocytosis, the management would not be altered at this juncture as she would not require for either entity no treatment other than active monitoring. Therefore, we have elected to proceed to ongoing active monitoring and I will see her back in the Haematology Clinic in six months’ time.”
This was before he had some of the latest results back. I am unsure if this means I even have a myeloproliferative disorder, I have a lot of the symptoms. I have a 4 year old so the breathlessness, dizzy spells and fatigue are really hard to cope with, but more so the unease of not knowing! Has anyone else had an issue with being officially diagnosed or tips on the anxiety of waiting so long between appointments? Any convo would really help as I am spiralling a bit!
A great big welcome to our forum and I am not surprised that you are spiralling a bit, especially with a 4 yr old to care for. and your symptoms @May
You are certainly not a bit of a fraud:.
A bone marrow biopsy is often advised.
Some of us are on active monitoring (watch and wait), I have been on it for 19 yrs, I manage my symptoms like fatigue on a daily basis, and I have 6 mthly blood tests.
Yes, the not knowing and waiting on tests, results and appointments is stressful, and anxiety making.
You have also had to go through this during Covid times.
Personally I found counselling helped me and your GP might have some ideas.
Blood Cancer UK also has some handy hints Blood cancer: mind and emotions | Blood Cancer UK
I reckon my thoughts and emotions have been on high alert and like being on a rollercoaster since my first appointment.
The main thing is that you keep posting, really look after and be kind to yourself
Thank you so much for taking time to post this. I hope you are doing okay?
No fraud squad here so please do be kind to yourself.
It certainly sounds like you have been through lots and we understand that the uncertainty, without a label or diagnosis can feel quite unsettling. As you rightly say, if you know what you are dealing with it can feel easier.
It is reassuring that you are being monitored however if the wait feels too long please do know that you can also request an earlier appointment with your haematology consultant.
Can i ask May does your consultant and GP know about your current symptoms? If not we would encourage you to relay this to them.
You mentioned that you have yet to have a formal diagnosis although it has been mentioned that you likely fall into that category of having a mild and early stage MPN. I have linked here to our information around MPN’s in case it allows you to write down any more questions for your consultant- Blood cancer types explained | Blood Cancer UK.
I also wanted to let you know that we are always at the end of the phone for you should you prefer to talk things through- Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
Thanks so much for the welcome and reassuring words!
I am nervous about the biopsy however, I think it would help to know exactly what is happening. I just hoped there was another way to get the diagnosis.
I am sorry to hear you have to deal with the symptoms but good to know you’re being monitored regularly, thanks so much for sharing.
Will look into some counselling as I hate being a burden on friends/family. Thanks again for your advice
Thanks Lauran, I am okay and hope you are too!
I will push for a follow up appointment to discuss everything with the haematologist asap, it feels like he decided the diagnosis but did not want to say it to my face so wrote a letter? I am not sure.
I have a tendency to not be as vocal with my symptoms, my husband has been nagging me to update my GP about the pains I have been experiencing and the dizzy spells with more extreme tiredness, it just feels like they usually brush me off as I am a ‘busy young mum’. The links are super helpful though, thank you! Hope you’ve had a lovely day, much appreciated.
I won’t sugar coat that a bone marrow biopsy is a breeze it isn’t to some I have to have gas and air and guided by my specialist nurse she sits and holds my hand and tells me to keep breathing
A bone marrow biopsy is a great way to see what is happening and getting a diagnosis that way you can rest your mind from wondering is it this is it that
Report any new symptoms,
your not a burden
Write them down in a diary so that you have factual evidence to show consultant/GP
Sorry I missed this! Yes, it seems like the only option will be to get one done or live in uncertainty. Thanks for sharing your experience and tips.
@May living with uncertainty means my thoughts and emotions are all over the place.
Please do let us know how you get on.
Take lots of care of yourself
I can’t imagine what the waiting and not knowing is like . Please tell your drs all your symptoms else they won’t know how much you are suffering.
I would have the bone marrow test as
It will give you more answers.
I’m having one tomorrow and absolutely dreading it
Hope you get answers and get some rest which can’t be easy with a four year old sending hugs xxx
How did your biopsy go? I hope you’re recovering well and you get your results back ASAP! I’ll be sending you positive vibes over here <3
I received an email from a different haematologist I paid for to do some more tests and she’s said I should get the procedure done as well. Finally told the doctor my symptoms as well as I had a really bad light-headed/blurred vision spell today when I was out.
Sending hugs to you too and defo spoil yourself if you can x
It was ok I got through it and should get results soon …they are confident I’m in chronic phase but I’ll feel better once confirmed …been started on treatment and feeling positive…just feel so exhausted !!!
I’m glad you have told them all your symptoms …get all the tests…hoping you get answers quickly sending big hugs xx
That’s great you got it over with! Fingers crossed the results come in in record time, or you at least can sleep loads until they do x