Hi all hoping someone can clarify for me I was diagnosed with Essential thrombocythemia (ET) in December read on a few sites I can get a exemption certificate for my meds as on several after contacting gp and filling in form he has responded with et is not cancer and a condition that could lead to cancer there for that’s why I am on treatment hydroxycarbamide! I was on the understanding that I already have cancer can anybody clarify for me ? My gp is also gonna write to my haematologist for clarification thanks in advance also I am JAK2 positive
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Yes, @Joanne1970, you are correct, you are eligible for free prescriptions because Essential thrombocythemia (ET) is classed as a blood cancer. I was on Hydroxycarbamide for many years and was able to get an exemption. I wish you success in your efforts. Don’t let your GP talk you out if it! Warm wishes Willow x
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It’s not even about the free prescription it’s more about him telling me I don’t have cancer that bothers me
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I understand @Joanne1970, it’s a shock when you are first diagnosed and you are trying to get your head around it and then for your GP to say that it is rather invalidating. I do understand. Take care. Willow x
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Hello @Joanne1970 - I have Essential thrombocythemia (ET) too diagnosed over 18 years - and yes it is classified as blood cancer and you are definitely eligible for the exemption certificate, I also had it for many years. It may assist to share the Blood Cancer UK booklet about MPNs with your GP that confirms that and why Hydroxycarbamide is used - as that’s a treatment for our blood cancer to assist with the high production of platelets we have, to reduce those levels and the risks associated with high levels of platelets - it is not used to prevent the condition changing to any other blood cancer - GP needs a bit more knowledge on it all it seems 
. Your hospital consultant would no doubt sign your exemption application if needs be. All the best
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Thank you for your reply it was more my gp saying I don’t have cancer I’m like what is going on very insensitive to text me also
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Take your form to your consultant they can sign it
You can make a complaint/concern to the Practice Manager regarding your GP being insensitive and misinformed once they have clarification.
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Oh @Joanne1970 I’m so sorry to read how wrong your GP was! How confusing. My first haematologist tried telling me that my Polycythaemia vera (PV) wasn’t blood cancer, so I went on to change doctors as I wouldn’t have been able to trust his judgement again. Myeloproliferative neoplasms (MPN) like ours were classified by WHO as blood cancers in the early 2000s, so your GP really needs to update their understanding!
Personally, I’d say life is too short to be dealing with an insensitive doctor that will be coordinating a lot of your care who doesn’t seem to know about the blood cancer you’ve been diagnosed with. I’d be tempted to change to one who cares, if possible.
How are you getting on aside from that rubbish doctor?
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Hi Duncan yeah not to bad had a few episodes aching bones tingling hands tiredness but ok not all the time but today when my doctor texted me to say I don’t have cancer then I went in told reception how up set I was he then replyed with this :: Dear Mrs. Williamson,
Apologies for the confusion with this I didn’t mean to upset you. The Haematology letter from 11th December states a diagnosis of Essential Thrombocythaemia. We have discussed this in our Practice meeting today amongst the GPs and our understanding is that this is not a cancer but is at risk of becoming a cancer if left untreated. I think the best thing to do is to write to your Consultant to clarify so I have sent a letter to them today. I’ll let you know when we have a response.
So my head been all over the place
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Well it’s good that he apologised for upsetting you at least. I’d be very concerned that none of that practice of doctors think Essential thrombocythemia (ET) is a cancer. Is there a way you can send them this link to Blood Cancer UK information about Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
Perhaps tell your haematologist about this issue and ask them to contact your GP to clarify that you are in fact living already with a cancer, sorry to say. It’s not like we’d ever want these diagnoses! But it would be helpful for you and your treatment for your GP and their team to be on the same page as your haematologist.
Sorry to read about those symptoms you’re experiencing, make sure to keep note and share any concerns with your haematologist. Hopefully they’ll settle down.
Do please keep us posted about how you get on @Joanne1970.
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