Thank you so much to those of you who have shared their experiences so far on this thread - Share your experiences to help us raise awareness of blood cancer - Help shape our work - Blood Cancer UK Forum.
To make it simpler for people to share their experiences, we’ve broken them up into specific threads.
We’d be really grateful if people could share their experiences if they weren’t told upon diagnosis that their condition was a type of blood cancer, and at what point they realised this? Did you end up finding this out for yourself?
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Hi@Alice_BloodCancerUK,was that what you were looking for in my previous post ?
Thank you
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Hi @Alice_BloodCancerUK I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2003 and I was definitely not told it was blood cancer.
I probably did not realise it was a blood cancer until about 2010 when I read it on the Blood Cancer UK website.
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I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2018. I had certain symptoms that I was asking the GP about but also a routine mammogram had highlighted a need to be investigated at the same time. This joined the dots together and 2 diagnoses were possible. My husband is a doctor and I am a trained nurse so I knew it was a cancer diagnosis of some sort I was going to receive. However, when it was diagnosed as Chronic lymphocytic leukaemia (CLL) the consultant, after telling us, sent us to a CNS with the words “they’ve been doing some research and have some questions obviously”!!! We were given some leaflets by the CNS and told to go away and read them. That was that!! The words blood cancer were not used at all and no help was forthcoming. The fact that we had arrived prepared for the news did not reflect well, nor did they seem to feel that even people with knowledge need to digest that it is actually happening to them.We quickly sought a second opinion from a specialist haematologist who explained to me in a compassionate manner what I could expect from my condition. However, I still found out most things by myself. Reading from reliable resources and the charities and then asking the questions I needed to at my appointments.
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The phrase ‘blood disorder’ ran through my mind when I saw a huge bruise on the back of my arm months before my diagnosis- but I quickly laughed off the thought.
Fast-forward several months (after a blood test) and my GP told me I needed a blood transfusion and that he was calling an ambulance for me. I sat on my bed, glanced at the purple rash on my arm, and thought, ‘Oh no, I’ve got leukaemia. I’ve got cancer,’ - so it was no surprise when I was diagnosed a week later.
Strangely, it was thought that I had leukaemia as a child, so I knew a little about it. But I hadn’t expected to really get it. I even thought perhaps it was a self-fulfilling prophecy that I developed it, after the misdiagnosis during my childhood. The irrational things that go through our minds…
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Hi
I was told I had Acute Myeloid Leukaemia but no word about it being blood cancer. I was surprised to find the treatment was chemotherapy and can remember thinking that I didn’t know it was used to treat other conditions! I couldn’t understand why everyone was asking me if I was OK, I was under the impression that I was going to hospital to be treated and cured! The penny didn’t really drop until I came home after 5 weeks in hospital and had to visit the oncology outpatient department, I even googled to check that oncology did mean cancer!
I was diagnosed at the end of July 2021 and have had a Stem cell transplant but I can’t remember any medical professional ever saying the word “cancer” to me.
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Hi, many years ago I went to the doctors with painful feet. My GP said platelets were high but nothing to worry about. Fast forward a few more years I went again because pain got worse. Blood tests scans and bone marrow biopsy performed and was told I had suspected ET. Got two blood clots in my leg following the biopsy. I was told not to google things so I didn’t. I was put on aspirin. fast forward few more years, trying for a baby and was told during IVF that my “condition” may present complications" during pregnancy. Now I start to worry, what is this I have? Four weeks after giving birth I am rushed to hospital following seizures and have two blood clots in brain. Once well enough I attend several hospital appointments to see a brain specialist and he very bluntly tells me that I should be taking all of this very seriously as I have CANCER! What I asked, I have never been told this!! I went home and googled and found that my condition was deemed a blood cancer! When I confronted my Haematologist, he just said " not cancer as you know it".Fast forward 10 more years and I am now suspected to have Polycythaemia vera (PV) too and told I must have Hydroxycarbamide, a chemo tablet so it is definitely a cancer of sorts. I hated the way I found it!!!
Sammy x
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I am not surprised that you hate the way you found out @Sammy.
I have Chronic lymphocytic leukaemia (CLL) and that was 19 yrs ago I was not told much about it, let alone it was a blood cancer, and I was in too much shock to ask. I found out over the years.
Fast forward and I was diagnosed with a skin condition on my head. The consultant was using medical terminology and talking about the operation I was to have and then I was to have chemotherapy and radiotherapy and with the knowledge I had gained through having blood cancer I said so is it skin cancer and he coughed and spluttered and mumbled yes.
I really was so upset how he could not be honest with me from the start, I was also so surprised how much it affected me.
Take care of yourself @Sammy
Thank you so much for sharing this @Sammy, what a huge shock this must have been for you, I’m so sorry you found out that way. Just shows how hugely important it is for people to be fully informed upon diagnosis so they can get the right information and support. We’re here if there’s ever anything we can do to support you.
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I was diagnosed while having a blood test for under active thyroid.
Although Primary Polycythemia rubra vera was explained to me it took me a while to understand I had a form of Cancer. On 3rd April 2023 I had a operation for lung cancer. This was found early through check ups and I am recovering very well.
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Hi @MarjorieOrsborn.1946 a very warm welcome to our forum and I am glad that you have found us and had the courage to post.
I have a different blood cancer, but I have had an underactive thyroid throughout my life, although I am not on any medication currently.
It sounds as if you have really been through the mill having also being diagnosed and had treatment for lung cancer.
I really look forward to hearing more about you and in my experience although we might all have different blood cancers but many of us share the same anxieties, thoughts, feelings and practicalities.
Look after yourself and be kind to yourself it is early days since your operation and please keep posting.