High platelet count/ cancer sign - any experience

[Zzzexhaustedzzz]

My mum (71) has been told she has a blood disorder which means too many platelets are made. She has been put on some kind of mild chemo which thins your blood. They found a clot in her neck which will hopefully disperse.
Having googled with no prior knowledge I am confused/ concerned.
This blood disease is rare. High platelets are often due to cancer.
She has not had a full scan of her body, only the chest up.
Both her parents had cancer, so she is scared of it and won’t push for this.
I get the impression scans are held back due to expense.
She probably hasn’t drawn attention to the fact that she has unexplained weight loss in the last 2 years, which is when other symptoms of high platelets began (rushing sound in ears/ migraine like symptoms/ cold extremities and a painful toe).
I don’t feel informed enough but feel like insisting on going to her next appointment and trying to push for a full body scan, failing that she should get one privately?
Completely at a loss.

[Zzzexhaustedzzz]

any Ideas?

[Zzzexhaustedzzz]

I realise I may be over-cautious - anyone?

[LarkDescending]

Both my (divorced) parents have multiple hospital appointments and for non-routine ones I ask them if they would like me to come - I don’t insist if they don’t want it. If you do accompany her it’s certainly worth asking about whether a further scan is planned and whether this may be part of a bigger picture.

I must say that my own experience has not been that scans were hard to come by on the NHS due to expense - especially when there has been any suspicion of malignancy.

[Greybeardy]

High platelets can be due to lots of things not just cancer. If your Mum’s team have got as far as starting drug treatment for a specific condition they must be pretty convinced of the diagnosis (and have already done some imaging to diagnose the clot?). Not everything needs a scan and indeed random whole body scanning can cause more harm than good. Scans are not withheld for cost reasons.

If your Mum is happy for you to join her then it seems completely reasonable to ask the questions, but if they’ve made a sensible diagnosis ‘pushing’ for random scans probably won’t help her.

[elf666]

Hi, would the mild chemo be Hydroxycarbamide? It would be a good idea to go to your mums next appointment. There is a website called MPNvoice which may be helpful. Please don't panic as high platelets can be easily managed.

[Zzzexhaustedzzz]

Thankyou for your replies. I have done a bit more research and I realise that a full body scan may not always be a good idea. The fact that it’s often a sign of cancer made me really worried.

[UmptyDumpty1]

Op, does she have polycythemia? It is a blood disorder that’s in the same category as cancer however it is not. Commonly treated by blood drains (for the lack of correct term) which is very effective also by using low doses of chemo x

[elf666]

UmptyDumpty, polycythemia was reclassified by the world health organisation in 2008 as a blood cancer but mainly covers too many red blood cells rather than platelets. The good thing is it doesn't spread like " normal" cancers.

[UmptyDumpty1]

Apologies Op, @elf666 you are correct the correct term is thrombocytosis (May be spelt incorrectly) it can be caused by a number of things but something as simple as anaemia. I hope you’ve had good news x

[IntotheWoods84]

This is called essential thrombocythemia - it’s manageable with medicine and once that’s working, shouldn’t be too scary long term. My DH has it and he’s 33.

Bloodwise have a great booklet about MPNs including essential thrombocythemia. Stay away from google, read that and go with her to her appt with the haematologist.

Good luck and much love.

[IntotheWoods84]

Just an extra thing - it is a blood cancer - it’s a problem with the bone marrow so not one with tumours. A body scan wouldn’t be necessary really - unless you are concerned about additional problems.

[RockNRollNerd]

Like others have said this sounds like polycythemia or essential thrombythaemia. They are classified as cancers and can be very successfully controlled with tablet chemotherapy drugs.

I highly recommend looking at MPN Voice as a great source of information www.mpnvoice.org.uk/about-mpns/questions-about-mpns/what-are-mpns.aspx

MPNs aren’t the type of cancer that metastasise and cause tumors (hence patients don’t get scans like those with eg bowel or breast cancer). Many patients live for years with no side effects or impact on their daily lives. My dad is five years on from his diagnosis with PCV and apart from the tablets making him feel the cold more he feels as great as he did before diagnosis. It’s scary because cancer automatically makes your worry about tumours and stages etc whereas MPNs are not like that at all.

[MyNameIsArthur]

I had blood cancer (MDS) but the opposite happened with my platelets in that they were very low and I was bleeding and bruising everywhere. Also had low haemoglobin and neutrophils. To determine if I had blood cancer, a bone marrow aspiration was done and then a bone marrow biopsy.

Hope your mum will be okay OP