Hi all , I’m new to the forum so hopefully someone can help , any advice would be greatly appreciated.
My journey so far , high red blood platelets, unexplained bruising, breathless and extreme fatigue.
So I’ve had numerous blood work, chest X-ray, bone marrow biopsy , kidney ultrasound and a CT scan next week .
The Haemotologist sent my BMB off for further testing and a second opinion. So this will take 3 months to be clear if it’s a type of cancer . We did discuss ET I know some knowledge so was aware of the conversation but the consultant wouldn’t and couldn’t confirm anything at the time .
I also have very painful left side pain which could be a previous kidney issue or something else. This has been continuously been since December last year ! I have a CT scan next week to rule out stones etc but I’m wondering if this is my spleen ?
My biopsy initially shows abnormalities but what that means to me I’m not sure .
Has anyone experienced anything similar?
I’ve tried every over the counter medication, my doctors are not the greatest so I’m wondering do I contact Haematology
I cannot get through to Urology although I haven’t actually seen a consultant as the two departments are corresponding together.
Any advice would be great , the waiting is taking its toll . Thank you for reading.
Hi @Lou69 and a great big welcome to our forum.
It sounds as if your diagnostic work is and has been extensive and unfortunately it does take so long.
I find the never ending waiting for tests, results and appointments is very anxious making.
Perhaps it is worth checking out with your GP/Consultant/CNS (Clinical Nurse Specialist), or equivalent, if you have one, the over the counter medications you are considering taking or taking because perhaps they might affect your test results.
It sounds as if you have some medical knowledge, I do not.
Do look after yourself and please keep posting how you are doing.
Hi Erica , thank you so much for your message. It’s helped greatly. I will call up my consultant and have a chat about medication and ask if there is any news regarding my BMB results.
I would rather wait longer if this means a diagnosis either way .
Hi @Lou69,
Thank you so much for taking the time to contact us. I am really pleased you have & i hope you are doing okay today?
Erica has already been a great support but i also wanted to offer you our support service team input. We have a helpline which is open 7 days Lou and please do contact us should you think talking things through would be helpful- Blood cancer information and support by phone and email | Blood Cancer UK.
It sounds like you haematologist has been thorough which is exactly what we would expect. However I do appreciate how the wait to understand more about your results can be a really frustrating & worrying time, so please do be kind to yourself and try not to ‘Dr Google’ too much.
You mentioned left sided pain and as you have rightly said this could be a symptom of an enlarged spleen but also could be a radiated pain from another region, such as kidney so i do hope the CT scan next week is able to confirm this and it will hopefully help conclude a diagnosis for you.
Have you been able to access support from your GP at all with regards to your pain relief? If not Lou, this may be something that you wish to do in the meantime and also it is important to have your GP looped into everything that’s happening so they can support you moving forwards.
May I also ask,do you have a follow up appointment planned for your haematologist?
Again should you prefer to talk anything through, please don’t hesitate to contact us.
Hi Lauren , thank you for your kind words and advice. Really appreciate the help at this worrying time .
Hopefully the CT may shed some light on the pain I’m experiencing.
I do have a follow up appointment with the Haemotologist on the 3rd May so a while yet to find out my BMB results regarding further testing and a second opinion.
I will definitely contact my doctor regarding pain medication, they have been proactive on my high platelet levels although a little tricky to contact initially as all surgeries are so busy .
I will also look and read through the information which will also help me greatly.
Off course I can update you further once I know anything more . I’ve found the forum comforting to know I can express my concerns and anxiety without troubling and worrying family members some are not aware of my situation as yet .
Hi Lauren , just thought I would update you from my previous message last week.
I’ve posted on here before with my journey so far . I have high platelets so numerous tests carried out including, bone marrow biopsy which im still waiting for the results as it needed sending away for further testing and a second opinion.
I’m also had a CT scan yesterday for kidney pain so im hoping I won’t have to wait to long for the results. I’m having a lot of pain and have been for 3 months!
Just wondering if anyone has had a similar experience, high platelets and pain elsewhere.
Could it be spleen pain ? I’m just not sure what’s happening tbh .
I’ve had previous issues with my kidneys before and a operation many years ago .
I can’t seem to get through to my drs and when I mentioned to the Haematologist the last time I saw them they didn’t offer any advice other than to refer me to the Urologist. Any advice would be great .
Not sure I can get through another month or so until my Haemotologist appointment on the 3rd of May .
It’s taking its toll for sure .
Hi @Lou69 I will copy your post to @LauranBloodCancerUK for you.
I have learnt to be ‘pleasantly assertive’ and I write all my questions down before a medical appointment and I don’t leave the office till I have the responses that I am looking for.
It’s my appointment too!!.
I have also learnt to be persistent in getting a drs appointment, what’s the stumbling block in getting a drs appointment?
Look after yourself and if you feel worse perhaps it a trip to A&E.
Hi Erica , thank you for your kind reply .
I’m definitely going to try and be more assertive in my appointments .
My partner comes with me but not into my consultation unless I feel that I need extra support.
My doctor’s surgery is under pressure like all of them are , getting an appointment or telephone call back is near on impossible.
Hi @Lou69 ,
Thank you for updating us all. How are you feeling today? I am pleased to hear that you have had a kidney scan.
I appreciate the wait for both your biopsy & scan results whilst being weighed down by your symptoms must be so difficult for you. So please do lean on us in any capacity you need to. Call our helpline and we can talk things through if you feel that might help at all- 0808 2080 888.
I would encourage you to persevere with your GP and push for an appointment. It’s important you have their support whilst you wait for you biopsy results and you may also be able to discuss some pain relief with them. Of course out of hours is always an option also should you feel you need further help.
Again Lou if we can be of any help to you right now do know we are only a phone call away.
Thank you for your message and advice. I’m feeling quite low and upset at the moment.
I called Haematology this morning and spoke to my consultants secretary.
Explained my situation and I’m hoping to have some advice at some point . Even if it’s help on medication .
I don’t expect to have a conversation with them as I know there so busy .
Obviously where I have two departments dealing with my symptoms it’s tricky.
I also hopping to hear some news about my scan as that could help greatly.
Appreciate all your messages they really do help me .
Hi @Lou69 ,
Oh that’s really understandable you are feeling upset & down. If you need to talk at any point, our helpline is open 7 days.
I’m pleased you reached out to the secretary- it means they understand fully what you are going through.
The waiting must be really difficult & it is likely that once you know what all the results mean, you will feel a lot easier in knowing what you are dealing with.
Do go easy on yourself & find some distraction in the small things this weekend.
Thank you for your kind words . The consultant rang me which I really appreciated .
Talked through pain relief but unfortunately I can’t take the ones offered .
There also keen to see the scan results hopefully this week .
I’ll have a busy time over the weekend working and visiting my mum .
Hi Lauran , just thought I would update about my ongoing investigations ref high platelets and kidney pain .
No news ref my CT scan hopefully in the next couple of days.
I spoke to the consultant regarding pain relief and I touched on the subject of my biopsy results . These were going to be sent off and have a second opinion also .
The conversation went that they didn’t think it was a cancer diagnosis as not enough evidence? I’m a little confused as my biopsy results flagged up abnormalities but couldn’t be sure either way I guess inconclusive. The consultant also mentioned in my last appointment that it could be a blood cancer (ET) but could be 100% certain.
So now I’m thinking I’ve pressed the consultant for answers before the end of 3 months which was the waiting time I was told .
I have to wait for the scan results and go from there , and if anything is picked up on the Urology side I’ll be referred back to them to investigate further .
As for the Haematologist I’m guessing there work is done although my platelets are high and have been for sometime.
Maybe that’s normal for me ?
Im also concerned that having high platelets can cause heart attacks and strokes .
Unfortunately that does run in my family having lost my dad , he was 56 , to a sudden heart attack.
I’m worried there discharge me without a face to face appointment my next one is scheduled for the 3rd May ( biopsy results)
I have a few questions to ask and feel I’ve never asked enough throughout the whole process.
I’m worried and concerned that something will be missed , my overall experience with the NHS has been good .
Hi @Lou69,
Thanks so much for taking the time to update me. The questions you have are valid and completely understandable. I certainly feel you will get more solid answers once the full biopsy report is back.
It would also be good to understand the history of your platelets & be able to compare your numbers from previous results.
Your situation sounds slightly more complex due to kidney pain and it is reassuring to know that urology are on hand for further referral should that be eliminated as a separate issue.
I wonder Louise, if it would be helpful to talk things through with us? If you think that might help i can organise a scheduled call for later this week or indeed the start of next?
Hi Lauran , thank you for your kind words. I will most definitely call and speak to one of your team .
Talking helps greatly. My partner has been amazing very supportive but feel I can’t off load all the time .
I haven’t told all members of my family as I don’t want them worrying.
That’s why I find the forum a great comfort.
Hi Lauran , hope you are well . Just thought I would update you on from my last post .
Unfortunately I haven’t heard anything back from my scan results, so far it’s been 3 weeks ?
Would this be normal. I’m guessing the department must be busy .
Not sure if I should contact my consultant again, I don’t want to be seen to be over anxious.
My biopsy results will be on the 3rd May so sometime still to go .
It’s a never ending cycle of tests and appointments and long wait times in between.
It’s seems very overwhelming and stressful although the consultant said not to worry.
How can you not ? Until you have any definite answers, I would also like to ask a few questions that I have noted down whatever the outcome.
This would be regarding my platelet count which is high but not dangerously apparently.
I’m worried about the implications as I do seem to be quite breathless whilst I’m at work , part of which is quite physical and some heavy lifting involved .
My partner is concerned about this as over exerting may not be a good thing.
I haven’t mentioned this at all in my consultations , but was asked and I said no at the time but it’s becoming more apparent now .
Hi @Lou69 my, non medical, philosophy is always to tell my medical team any symptoms I have, their severity and impact on my life.
Sorry to hear that you are still awaiting test results, I have awaited I don’t know how many and for how long ever the years.
Please look after yourself and keep posting
Hi Erica , thank you for your reply. I will be sure to mention my symptoms when I chat to the consultant at the next opportunity.
I’m hoping I will hear back sooner rather than later with regards to all my test results.
Hi Erica , hope you are well.
Just wanted to update on here and for some sound advice please.
I’ve had my kidney CT scan back and all clear as I had a letter today .
However I’m still waiting for my biopsy results on the 3rd May .
I’m still in pain so I’m not sure what’s going on to be honest, maybe because I’ve had previously had kidney issues that the consultant wanted to check this out and exclude this from there checklist as such .
The pain must be coming from somewhere as it’s been like this for 6 months.
Do I ask for a different scan ?
I’m worried that everything is going to get dismissed and I’ll come away none the wiser on my symptoms.
Off course I don’t really know where I stand on my full BMB biopsy results until the day .