I lost my mum on the 6th of September 2024 to what we thought was frailty and infection as she had a leg amputation that never healed. It wasn’t until we got her death certificate that revealed that one of the causes was essential thrombocythemia. Obviously running to Google and finding out that it was a blood cancer was a shocking revelation and something we never expected.
Having this new information brought so many questions to light and unfortunately still remain unanswered.
My dad, sister and I are all still wondering how my mum had the strength to now share this information or if she even knew and just didn’t want to worry us.
My sister is now getting tests done as she has raised platelets and this is brought a whole new anxiety to me, should I get tested?, do gp’s routinely test for this?, how do o start.
If you’ve got this far thank you so much for reading and I feel like I’ve said a lot but nothing actually makes sense.
Again, I hope if you’re reading this then I’m sorry.
I can only speak on behalf of myself and say I havnt told my children yet about my diagnosis of Essential thrombocythemia (ET) purely because they would listed to it all and only hear the C word and think the worst.
your dr could run blood tests and see what your platelets are and if raised refer you.
I was told it isn’t hereditary and just randomly happens and is very rare.
Finding out she had blood cancer must have been a real shock to you and a lot to process and it’s even harder when you don’t have the answers to your questions.
As a first step, I would suggest making an appointment with your GP to discuss your concerns and take it from there. Remember the support line is there as well. I have copied the link below.
Hi @Rachie1905 so sorry to hear about your mom. She must have been a very strong lady to go through everything that she did alone but I’m sure she was just thinking of you. @Nichola75 has given you some very sound advice. I don’t think for the most part that blood cancers are hereditary so no immediate cause for panic though it must be worrying to see the signs in your sister. Your medical team should be able to put your mind at rest. Doctors don’t routinely test for blood cancers which is why mine got missed and I had a very late diagnosis out of the blue as well as a nasty fracture. Hope it all works out for. Let us know how you get on.
Welcome to the forum, and please accept my condolences. If it helps you feel better, re your Mom might have been burdened keeping something to herself: it is quite possible your Mom didn’t know. Some blood cancers take us totally by surprise in a routine blood test for something else. So many people on this forum say, if the doc hadn’t told me I had blood cancer, I would never have suspected it. The symptoms can look like something else (like pesky colds) or seem normal for a person’s age (fatigue), or the person might have no obvious symptoms at all.
I am sorry to hear about the devastating loss of your mum. I can only imagine what a difficult time this must be for you and your family. It is understandable that you were shocked to discover that your mum had Essential Thrombocythemia and have lots of questions.
Do you mind me asking if you have spoken to anyone about this such as her medical team or the GP? If your mum passed away whilst in hospital, you can contact the Bereavement Care Team at the hospital to arrange a meeting for you.
I am sorry to read that your sister is now getting tests done and this is understandably causing you anxiety. I have enclosed some information about tests required for Essential thrombocythemia (ET) which you might find helpful and would encourage you to discuss your concerns with your GP. Testing for essential thrombocythaemia | Blood Cancer UK .
Just to let you know we do have a page on our website which may be helpful to read over at a time that feels right to you - Losing a loved one to blood cancer | Blood Cancer UK this includes support services from a range of places.
and is very rare.
If it helps you feel better, re your Mom might have been burdened keeping something to herself: it is quite possible your Mom didn’t know. Some blood cancers take us totally by surprise in a routine blood test for something else. So many people on this forum say, if the doc hadn’t told me I had blood cancer, I would never have suspected it. The symptoms can look like something else (like pesky colds) or seem normal for a person’s age (fatigue), or the person might have no obvious symptoms at all.