Hi
I’m really hoping someone can help me here. I was invited for a shingles vaccine on 28/2 at my gp surgery, I know that they are normally for people that are older (I’m 52) but because my mum 86, who has dementia lives with us, I thought it was because of that. Anyway, the care worker checked my name, date of birth and then said that I was having the vaccine because I have an autoimmune problem, well I had no idea what she was talking about, so literally said “Do I?” she read some more and said I had Essential thrombocythemia (ET), I asked her to write it down as I wanted to google it later. Well, I did and now I’m really confused and concerned and wondering why no one has told me before now? The back story is that on halloween I slipped in the kitchen and fell, I hurt my leg, and was a bit achey. Two weeks later I got out of the car and I felt something pop/snap in my right leg, thigh/bum region. It was painful and when I sat down, it actually felt like I was sitting on a foreign object, I even checked for the dogs ball😂 When I went to the loo, I checked in the mirror and my right bum cheek was black with bruising. I went to the dr. on the following monday and showed her, also mentioned in passing that I had been feeling unsteady/wobbly for a bit and that my apple watch kept giving me warnings that my heart rate was excessive, usually when I was doing very little and that generally I am always so tired, but caring for someone with dementia is exhausting. Anyway she sent me for bloods and my platelets were high, but I did have a really nasty head cold at the time, so was told to repeat the test. The second test they were still high, but not as high and I have to repeat in 3 months. Nobody has ever mentioned blood cancer until I had my shingles vaccine, the carer even asked if I was currently on chemo, and I didn’t even catch on then! I logged on to the dr appts system the next morning, hoping to get an appt to discuss all of this, and was told a dr had reviewed my request and would be intouch on 12/3 at some point!! I asked for a repeat prescription last week for some cream a bit of menopausal acne I have had and they tried to make me see a dr for that, it just doesn’t make any sense to me! So maybe hopefully someone here will be able to help me?
Hi @uplands72
Firstly welcome to the forum…
You post describes quite a bizarre case so I can totally empathise the confusion you maybe feeling.
That’s crazy that something like et is on your record but no one has informed you of it. Blood test results on a one off can produce all kinds of anomalies so it’s best to always request another and look for consistency to form a proper diagnosis. Sometimes an elevation or decrease in levels can be a result of anything from an event to diet, to a cold to an injury…
Many patients of blood cancer are on a “watch and wait” which to my understanding means that you’re at a stage where you’re not falling within levels where treatment is advised so you’ll just be closely monitored or that it may progress at a very slow rate so you can kinda continue as normal until symptoms become more severe or that you can make small adjustments to suppress it.
I’m hoping by what you’ve described that if you have indeed have et that you’re in the watch and wait stage but it’s madness that no one has told you more formally.
Be mindful of healthcare professionals as sometimes a diagnosis can be an opinion of one so any feelings of confusion or lack of assertiveness from them defo get a second or third opinion. I personally would want a haematologist to diagnose the condition then a gp. When I was diagnosed with my blood cancer my gp said it wasn’t cancer and just a temporary anomaly… he was totally wrong and Ive since left that surgery due to a lack of confidence.
I would advise waiting for that appointment as best you can, and defo ask for a hospital referral and ask to speak to a specialist. If you do have et, there are many others on here with et so don’t feel alone if it appears you have the condition.
Hi Rammie
Thank you so much for your reply. It was/is all a bit of a shock to be honest, I’m more cross at the way I have been told! The HCP who did my shingles vaccine, I assume thought I was already informed. I also can’t believe that the Dr, doesn’t want to see me sooner, if only to put my mind at rest after I explained what had happened on the online request page! I am going to request that test for the mutated gene, so hopefully that will provide some answers.
Do you receive any treatment? Have you been referred to a Haematologist?
Yeah totally it’s crazy no one has spoken to you which is why I’d question it as it is a major thing.
When I was diagnosed had blood tests done regularly to see where I was at and then was given treatments after around 6-8months.
It’s a scary thought of knowing you have cancer and not taking anything for it but I’ve learnt that actually it’s quite normal.
I was under a haematologists care when I diagnosed and they were the ones to tell me.
I know the health service is swamped but communication is vital just for assurances if anything that you’re not being “fobbed” off.
It maybe futile but maybe worth ringing for any cancellation appointments to try and bring the appointment sooner??
I think I’ll message again tomorrow morning. Thanks so much for your support
Hi @uplands72 a great big welcome I can really understand your fears, anxiety, confusion, shock and anger.
I had a similar shock as I was diagnosed by a gynaecologist and just told to go to my GP.
I now realise that I had to be referred via my GP to a haematologist.
What I didn’t realise is the amount of waiting and not knowing I was entering and the emotional rollercoaster since last year.
@Rammie18 has given you great responses.
You have had a lot going on especially since last autumn.
Perhaps write down all your fears and questions
Really look after yourself and let’s hope you get some answers next week.
Please do keep letting you know how you are.
Wow @uplands72, so glad you found the forum considering all that you’ve shared. I’m so sorry you found out about such a serious diagnosis in such a sloppy way. It’s totally understandable that this is a shock to you and it’s rubbish that you’re experiencing all this back to front without support. Now you have this forum!
Last year I found out I have Polycythaemia vera (PV) in a similarly abrupt way, although it was after having a blood test done which picked up on the JAK2 gene mutation that most folks with MPNs like Essential thrombocythemia (ET) and Polycythaemia vera (PV) tend to have. The result came through without any notes from someone medical which sent me into quite a panic as I obviously checked what having a JAK2 mutation could mean. There are many, many other gene mutations associated with these MPNs and other blood cancers but JAK2 is the main one. Some people have MPNs without having the JAK2 mutation.
I can’t better what dear @Rammie18 and @Erica have said, but please try to take it easy while you await your appointment and find distractions and diversions so you don’t spend every waking moment worrying. Perhaps caring for your mum takes up enough of your headspace, but I know how thoughts about Essential thrombocythemia (ET) will likely be taking over. Time to let yourself be cared for, or do caring things for yourself.
I’d say, if you can, try to get to speak to someone sooner. You might even want to point out that waiting a week after this massive shock finding makes you feel like you need support and answers sooner due to the apparent severity of what you were told about Essential thrombocythemia (ET). Maybe politely shame the surgery into finding time to speak with you ASAP, considering they’ve messed up and left you living unbeknownst with this for so long.
Dear me, what a horrible way to find out what can be life-changing information. Let alone the risks you may be living with now. Let’s hope it’s a mistake, but we’re here for you should it be what it seems to be.
In the meantime, while you await clarification, try to steer clear of reading about Essential thrombocythemia (ET) and other MPNs online unless it’s from official blood cancer organisations. There’s a lot of nonsense about prognoses and how long we can survive and so on and, frankly, it’s just not worth stressing yourself out reading it when it might not even be accurate.
Better to wait till you know for sure what’s going on, or stick to places like this. Should you wish to read more, here’s some great information about MPNs including Essential thrombocythemia (ET).
Thinking of you, @uplands72. Keep us posted about how it goes.
UPDATE
Firstly thank you all for the lovely welcome and caring replies. Yesterday (Wednesday) took your advice and requested via the online appt service an earlier appt than the 12/3. You have to wait till 8am to be able to access the appointment system for that day, and I was on it as soon, as it opened. I waited till after 3pm to give them a chance to reply. So after 3pm I made a complaint to the practice manager, explaining all that had gone on previously and saying that I was disappointed in the response time and how worried I am. About 10 past 3 I had a text telling me that a Dr. would ring me Friday and that they couldn’t give me an exact time, due to demand. It’s better than waiting all
over the weekend until the 12/3, but still not the best! Anyway, about 4.30 the practice manager rang me and basically said that a Dr. does need to speak to me, but there are people with more urgent requests than mine, and that they are short staffed and that although she’s not medically trained there’s nothing to worry about! I do appreciate that there are people out there that have more urgent requests than me, but this is an urgent request for me and they flipping started it all this, by a member of their staff telling me I had Essential Thrombocytosis!
How can they be so flippant about it all? Unfortunately, I was in quite a stressful situation when she rang me and I should have been a bit more assertive, but it was easier just to let it go. She made me
feel like I was wasting everyone’s time.
So I’m none the wiser atm, hopefully will know more tomorrow 
and I will let you know! Sorry about the rant and thanks for listening X
Oh, @uplands72 we are here for you to have a rant to.
Please do let us know how you get on tomorrow and perhaps write down everything you would like answers to so you are prepared, and to the point and be pleasantly assertive.
Be kind to yourself
Latest update.
So the Dr finally rang me at just gone 1pm.
I’m still a little bit lost for words. She said she put it on my notes, because she was trying to find a reason for my high platelets, but I don’t have Essential thrombocythemia (ET).
My platelets in November when I had the big unexplained bruise were 485 and in January 467 and they want me to have another blood test in April. She said my platelet count would continue to rise if I did have it and not reduce.
She was so blahzay about it, she did say sorry, but didn’t sound like she meant it at all. I told her I do have other symptoms of Essential thrombocythemia (ET) and she said well we will discuss this when your next blood results come back. I also said I’ve had a shingles vaccination too, that I didn’t need! Which made me feel awful for 2 days!!
I’m so annoyed at her couldn’t care less attitude, I’ve had an awful week, and she couldn’t give a 
Can you believe this? I’m still lost for words!
Dear @uplands72
I have read all your posts and I am so very sorry to hear what you have gone through. It sounds like the communication was really poor and I would suggest complaining about this. Here are some resources that may be helpful for you, I would also suggest talking to the GP practice manager to relay your experience:
VoiceAbility | How to complain about NHS care
Find your local Healthwatch | Healthwatch
I do hope you get some resolution to this and if you do feel your symptoms are worsening do not hesitate to call the GP and ask to see another Doctor if necessary.
Kind regards
Gemma
Hi Gemma
Thanks for your reply. I will definitely follow this up, I’m still completely gobsmacked at her attitude. There was no sincerity in her words at all, I would be mortified if I thought I’d caused so much upset to someone. Also the phone call was 3 mins long, did no one have 3 mins to put my mind at rest?