Lost my mum to ET

[Rach1911]

Hello and I’m sorry you’re reading this as it means someone/yourself is dealing with this too!

I lost my mum in September 2024 to which we thought was an unhealed above knee amputation site.

Turns out it was Essential thrombocythemia ('ET') to which my sister and I only learned by looking at her death certificate. This was hidden from us for 33 years.

I guess I know she was only doing it and not telling us because she didn’t want us to worry! On the flip side of this I can’t help but be a little frustrated. It turns out through extensive research into her medical files that she was diagnosed during pregnancy with me.

She also developed diabetes during pregnancy with me which I was already extremely guild riddled for as I used to think if she never had me she may not have had diabetes. That’s not the problem here though.

I was wondering if I may have the mutation that could potentially develop into eat!

I’m the age now where she had got diagnosed. I know it’s easy saying just go get tested, however, I have extreme health anxiety as well as generalised anxiety disorder. This has been heightened since the passing of my mum! I’m on the highest dose of citalopram and regularly take propanol.

I guess I don’t know what I want from this post but it’s just good to get it out there and off my shoulders.

Lots and lots of love to you all and thanks for reading my post!

[DuncanB]

Hi @Rach1911 and welcome to the forum.

I was sorry to read about you losing your Mum and that you only found out about her condition after she passed.

That must have been hugely difficult for you and your sister.

None of us can offer medical advice but you might want to reach out to the @BloodCancerUK-SupportTeam and the @BloodCancerUK_Nurses for help and support.

Take care

[Duncan]

Hello there @Rach1911, welcome to the forum, I hope it can come to help with your concerns. May I just say I’m really sorry to read of you losing your mum and the health anxiety you live with now, I can empathise with much of what you’ve bravely shared.

In 2023 I was diagnosed with Polycythaemia vera ('PV') which is very closely related to Essential thrombocythemia ('ET'). They tend to have similar and overlapping symptoms, treatments and side effects. I’ll put the great Blood Cancer UK information about Essential thrombocythemia ('ET') here for you: Essential thrombocythaemia | Blood Cancer UK

Something that may be reassuring is that it was only the 2000s (2008 I believe) when Essential thrombocythemia ('ET') was reclassified as a blood cancer. Prior to this it was considered a blood disorder and even now there are some doctors who have not updated their knowledge of these rare blood cancers called Myeloproliferative neoplasms ('MPN'). Sounds like you were born before your mum’s Essential thrombocythemia ('ET') was considered a blood cancer, and maybe she never knew either? Maybe you’d like to read about Myeloproliferative neoplasms ('MPN'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Something I asked my haematologist about is whether Myeloproliferative neoplasms ('MPN') can be inherited, but I was assured that they occur due to environmental carcinogens instead and can’t be passed down. In my case it was probably being smoked around by adults during my childhood which triggered the gene mutation that caused my blood cancer to develop. I’m told gene mutations typically happen in childhood but can take years, if at all, for any side effects to emerge.

I’m really sorry that you’re experiencing such strong anxiety. I live with PTSD and appreciate how anxiety can take over and trigger all sorts of reactions to health concerns. Isn’t it horrible?! I’ve not taken citalopram but I take a beta blocker which acts like anti-anxiety medicine and helps slow down my heart rate.

Has your GP suggested other non-medicine ways to manage anxious thinking? Perhaps while you’re taking those medicines to help with anxiety it could be a good time to practice some breathing techniques which are often recommended for anxiety. Health anxiety is very understandable but it can be so exhausting, have you considered some therapy? I know it can take a while to access it via the NHS but would recommend this. If you can fund it yourself then BACP, UKCP, and Mind are great places to look.

Finally, I’ll add the number for the Blood Cancer UK specialist nurses as they can suggest all sorts of resources and medical advice that we forum members cannot, do consider giving them a call as they really know their stuff. You can pass by them your worries and I’m sure you’ll find reassurance. Give them a call free on 0808 2080 888.

Do please let us know how you get on @Rach1911, I’m sorry you’re going through it right now.

[Happy2019]

@Rach1911

Sorry to hear about your mum and the story.

I was diagnosed 2 years ago and have yet to tell my children (both in their late 20’s)

There’s many reasons for this. The main one being they will listen to what it is and only hear the C word and then panic.

I am planning on telling them probably next year when I start on interferon.

[Ceri_BloodCancerUK]

Hi @Rach1911, and welcome, though I’m so sorry to hear about the loss of your Mum, and your subsequent worries on top of that grief. You said you weren’t sure what you wanted from the post, just that you needed to get it out. That’s more than enough reason to be here - and I hope that you don’t mind my sharing some more personal thoughts, as well as some resources.

Finding out about your mum’s Essential Thrombocythemia from her death certificate, after she’d carried that diagnosis for 33 years, sounds like so much to take in. And the guilt around the diabetes; I didn’t want to skip past that, because it sounds like it’s been with you for a long time. As a mother myself, I can tell you that the joy of having my daughter has completely eclipsed anything else, and that guilt isn’t and shouldnt be yours to carry.

Now that I’ve shared that, I wanted to give you some more practical resources. We have a page that brings together bereavement support resources - it might be worth a look when the time feels right. And if you ever wanted to talk to someone about the anxiety you’re feeling,you can speak to your GP about a referral to psychological therapy (that’s usually the route in Scotland). Breathing Space is also a free Scottish service if you ever need someone to talk to in the moment, and they’re on 0800 838 587.

With regards to your question about the mutation, the ‘Duncans’ are right - our lovely Support Line nurses would be well placed to chat. They’re experts at sitting with the more emotionally complicated stuff as well as the clinical questions, and I can attest to each one of them being simply fantastic human beings who are reassuring, knowledgeable, and understanding. You can call them for free on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.

Take care and do keep posting,

Ceri - Blood Cancer UK Support Services