Recently diagnosed and then left without being told it’s even cancer


My husband has recently been diagnosed with Essential thrombocythemia (ET). We are in shock this is due to the fact my husband has had higher than normal platelets since 2013 no one even told him nor did anything about it. Fast forward to the present he’s been unwell for a while was diagnosed with fibromyalgia in 2019 so has suffered with that. He also suffers depression panic and anxiety attacks.
He’s had bloods taken etc leading upto diagnosis. We was told in November of 2022 they suspected a blood disorder this was 2 days after loosing my father in law to lung cancer, but a referral was not made as urgent so we waited 18 months before even seeing a haematologist.
We was told by the haematologist in feb 2024 its nothing to worry about and he didnt think a bone marrow biopsy would reveal anything and tried to talk my husband out of having the biopsy. My husband then lost his mother 4 months after his father.
I pushed for the biopsy to be done which was done in March 2024 we had a telephone consultation booked for May 2024 so that we could have the biopsy before the next meeting no one called with the results, GP hasn’t called we had the phone call with haematologist and was told he has Essential thrombocythemia (ET). And a letter to confirm what the results were would be sent out. Now bearing in mind he’s not been told he has cancer once in any calls or letters.
I had to Google what it meant to find different degrees of if it’s cancer or not. I then joined and Essential thrombocythemia (ET) support group on fb where I saw a post about how frightening it is to have cancer and how macmillan nurses helped them. I actually felt sick to my stomach to find out it is actually cancer. So I called macmillan helpline and had it all confirmed. But in the process was asked if have children because they will need to be tested for mutated genes etc. my youngest is 10yrs old and currently being tested for Ehlers danlos syndrome. Now this aswell.
My husband has been told to buy aspirin 75mg to take daily and will have a telephone call in September. Nothing about when he needs to have another blood test, how often absolutely nothing.
My husband still doesn’t think he has blood cancer he thinks it’s just an autoimmune disorder and I’m making it out to be worse than it is. I’ve sent him links to show this is blood cancer. But right now he’s caught a cold and it has absolutely floored him he’s been unable to get out of bed, he’s been coughing none stop, having low grade fevers, so not sleeping from having to keep coughing,
We don’t have an assigned cancer nurse, we’ve heard nothing from our GP. If I hadn’t read up on it or joined support groups we would never have even known this is cancer it’s just shocking. But where do we go from here as we have just been left

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Firstly, welcome. I think the charities such as blood cancer UK and others specific to individual conditions are such a lifeline. I was diagnosed with a different blood cancer in 2010. But no-one mentioned it was a blood cancer, that came from later research but perhaps for me I needed to take things in in stages. It seemed there were things they were primed to say in that first appt. For example they suggested I might have 10 years - I think the shock of evrything makes it hard to take everything on board and you only remember some things. The words Blood Cancer jumped out from the page and seemed somehow worse than the particular version I have. Just to emphasise the 10 year warning was 14 years ago and I am reasonably well. I hope you get some good support from the forum and elsewhere.


Welcome to the forum, @Tink1973, I’m so sorry you’re going through what sounds like such an overwhelming time! Please do remember that our support services nurses are here on 0808 2080 888 if you want to talk things through at any point. It all sounds like such a lot for you to take in at the moment, and I’m really sorry to hear about the lack of guidance you currently have around next steps in terms of blood tests etc, it sounds like you understandably have a lot of questions. You might find it useful to give the haematology department at the hospital your husband is under, a call and see if he has a key worker or clinical nurse specialist assigned to him. Sometimes people have these points of contact but just aren’t told. On this webpage written specifically for people newly diagnosed with blood cancer, it explains that one of the rights as someone with blood cancer, is having a key point of contact

  1. You should be given a named key worker – Someone in your medical team should act as your main point of contact for everything to do with your medical care and wellbeing. This is usually a clinical nurse specialist (CNS). If you haven’t been given a named key worker, don’t be afraid to ask for one.

In case it’s useful, we have a booklet on Essential thrombocythemia (ET) which can be downloaded or ordered for free, here - Essential thrombocythaemia (ET) | Blood Cancer UK Shop

You mentioned that you’ve been told your children will need to be tested. Our booklet above explains: it’s rare to have a family history of Essential thrombocythemia (ET), but talk to your specialist doctor if you are worried about this. In most cases, the genetic mutations that cause Essential thrombocythemia (ET) happen during your lifetime, and can’t be passed on.
Don’t be afraid to bring up any worries you might have around this with your husband’s GP or clinical team.

We’re here for you and your family if there’s anything we can do to support you. I hope you find this forum a really supportive space to share how you’re doing - you’re certainly not alone in these feelings and experiences you speak of. Take care,

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Thankyou so much for your reply. I think I will have to call to find out who will be our go to person as we just have the haematologist at the moment.
I have read lots of information some of it has overwhelmed me but I want to be prepared for what’s to come. I’m my husbands full time carer and have been since 2011, but I also have my own health issues just now as I might need spinal surgery. And my daughter is undergoing tests too for Ehlers danlos.
My mother in laws death is still under investigation over 1 year later and as I had POA it’s me the police and procurator fiscal(I’m in Scotland) are dealing with.
I sometimes feel like I’m drowning and won’t be able to surface again when it’s just so many things happening at once.
But I’m so glad I have found this forum and can see other peoples struggles and successes and know I’m not alone and the is light at the end of the tunnel as they say.
Thankyou for listening


Oh @Tink1973 I am so glad that you have found us, a great big welcome.
@Alice_BloodCancerUK ans @nelletap have given you brilliant responses.
I am so sorry to hear that you have lost both your husband’s parents within such a short space of time
I also have another blood cancer and I was diagnosed 20 yrs ago, but my haematologist never used the words blood cancer either, neither did my GP, they call it by it’s name,
I actually found out by this site years later.
I have never had a biopsy either.
I am on watch and wait (active monitoring) which means that I have appointments at regular intervals, which might be why your husband will have a telephone appointment in September.
Aspirin is a fairly common medication and because it is so cheap over the counter, it is also common that patients buy it themselves, my husband does.
I don’t know why but I have heard it said that there are 130 + blood cancers so they are are so used in the medical field calling the different conditions by their names. Also some medical professionals think It is shock overload at diagnosis.
I read on google that my life expectancy was 5-10 and I am still here 20 yrs later, so please do not believe everything on Google, stick to reputable sites.
I also have had skin cancer and again the dermatologist did not use the word cancer or chemotherapy, I had to ask him if that is what it was.
You have a lot on your place, but you are now part of our forum family, so you are never alone. Please do, what I find so difficult and ask for and receive help.
Another hint is to, with your husband, write down all your fears, questions and practicalities.
Perhaps it is time for your husband to make a GP appointment with his cough and fevers.
Be very kind to yourselves, you have so much going on and please do keep posting

Thankyou for your reply. I will certainly write down all our fears my husband is in denial at the moment so it’s a bit hard for him. He will say things like I don’t understand why this cold has hit me like this I have never ever had a cold hit me this hard. When I say it’s because his immune system will be down due to the cancer so he needs to take better care of himself now he shakes his head and tuts at me like it’s all in my head.
I have given him the downloadable booklet from this site to read through but I think if he reads that that’s admitting he has it which I understand is his way of coping.
He’s always been a if I bury my head in the sand with health issues it’s not happening which is why it took a long time to be diagnosed with depression as he would tell gp he was fine when he wasn’t.

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Hi @Tink1973 my husband is also a ‘head in the sand’ kind of guy, there is no right or wrong way or time dealing with a shock diagnosis. Denial is a protection mechanism.
My husband has never mentioned my leukaemia in 20 yrs.
Yes, it is hard for your husband, especially if he also has depression.
Just be kind to yourselves but this forum is a good place for you to be really honest how it is for you.
Please do keep posting and look after yourselves