First time ever using a forun, so bear with. I dont really know what i want to ask, but in my head i have loads of questions. I’ve waited a year to see a haematologist due to raised platelet, they are not really high. Fluctuating between 475 and 525. Saw haematologist in January, he did loads of blood tests, I thought I would get some answers but I’ve had to wait 4 months to see him again. There seems to be no urgency, but it’s not doing my state of mind any favours. When you hear blood cancers it scares me. Has anyone experienced similar . I had breast cancer 11 years ago and can’t help thinking some of the treatment may have caused this.
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Hello there @Domimo, welcome to the forum at this worrying time. This is a place where you can share how you’re doing so please feel free to ask or say what you need. I’m sure many here know exactly the state of mind you’re experiencing.
From my non-medical understanding I’d say it’s great you’ve seen a haematologist as it means your doctors have taken your concerns and blood tests seriously. Now you’re in the system, as it were, and you can always refer back to seeing the haematologist. I wonder if the testing in January was a complete blood count, or if there is further testing to be done? Might be worth asking for clarity from the specialist you saw. You may have been given contact details of a clinical nurse specialist (CNS) who you can ask too.
Unfortunately, long waits between tests and results are often common from what others round the forum have said. My own dad waited a few months for a gene mutation test. Sometimes the tests need to be sent to and analysed at university hospitals which can add extra time on top. I know when I was being tested it seemed to take ages, but it needs to be done thoroughly to be sure, so I’d say it’s worth the wait. Do you have loved ones you can talk this over with while you wait? Maybe some healthy distractions might help, what do you like to do as a hobby or exercise as they might be worth focusing on for now.
We forum members can’t offer medical advice, but if you’d like to speak with the lovely Blood Cancer UK specialist nurses I’m sure they can offer brilliant information and answer your medical queries, just give them a call free on 0808 2080 888.
Hope that helps a little @Domimo, do please keep us posted about how you get on.
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Hi @Domimo and welcome to the forum.
@Duncan has already provided a great reply.
Waiting always difficult and hoping that the wait means your clinical team are not overly concerned at this point.
Take care and be assured everyone on the forum understands just how difficult it is when in limbo.
As @Duncan says none of us are qualified to give medical advice but hear to help in any way we can
Take care
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Hi Duncan, thanks for your support. The haematologist tested for full blood count, plus the genetic test and for myeloproliferative and Chronic myeloid leukaemia ('CML'). There were about 12 tubes, so they were being thorough. I’ve only got another 3 weeks to wait for the results, but it’s hard
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You’re very welcome @Domimo, we do really understand here how the waiting can feel. Sounds like they took plenty of samples to test! Isn’t it amazing that our blood can hold so much information, I’m always a little awed by the science behind it.
So you’ve got a few weeks to wait, and perhaps results will return sooner, but for now I imagine it’s gong to be very tempting to ask Dr Google and AI about what you’re experiencing and my advice would be to try avoiding that. Search engines can’t replace the personalised healthcare our specialists offer, and often results on Google etc are generalised and inaccurate. I checked my own diagnosis online and was told I had 5 years to live—totally wrong!
I’d say try to stick to official blood cancer organisations for now like here. Speaking with the Blood Cancer UK nurses I’m sure can help relieve any very understandable worries you have. They’ll also point you towards other resources that will help.
It really is hard waiting for tests results but you are not alone, and do please hold out hope that your results will not be as worrying as our imaginations can be!
Yes @Domimo please, please take @Duncan advise! At this stage DO NOT Google, or ask AI, or chat or grok ANYTHING! I fell in trap and I’m only just crawling out of the hole after 4 months of being stuck in a doom loop, post anything and everything on this group they are wonderful, have a wealth of experience and knowledge and oodles and oodles of LOVE 
One thing I can reassure you on, when the NHS see an emergency they are ON it, I had a routine blood test for menopausal symptoms, had a phone call the next day! For more bloods and a urine sample, and was put in the 2 weeks cancer pathway to see a haematologist, that was October, lots of tests later, but already been told what they where looking for, 2nd December 2025, I was given my diagnosis of multiple myeloma, you will be well looked after- and take it as good, tgat they aren’t in a rush x and believe me I know that is hard x good luck x keep posting x
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