Share your story: your experience of being diagnosed

People find out that they have blood cancer a variety of ways, and people’s experiences can be very different. Many people go to their GP with symptoms and are sent for blood tests to get more information, before being sent to hospital for further tests. Others have a routine blood test for something else entirely, and the results lead to them being sent to see a specialist. Some people with acute blood cancers become very unwell very quickly and will have tests in hospital that show that they have blood cancer.

Feel free to share what led to you being diagnosed, and your experiences around your diagnosis here…

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Hi Alice, I am one of those people who had a routine blood test for something else completely different. In 2003 I had a severely abnormal cervical smear test and had an operation, I recovered but I felt really rough, flu like, emotional, hot and cold flushes, weight loss, faintness, bruising, frequent infections, no energy and really, really exhausted all the time. The gynaecologist ordered blood tests and when I went for the results he said ‘I have never had to tell anyone this before but you have chronic lymphocytic leukaemia, I cannot do any more for you so go back to your GP’. All I could see was the word ‘chronic’ with zig zigs around it and I was outside his office with a nurse asking if I was OK. Of course I said yes !!. I kept saying chronic lymphocytic leukaemia so I did not forget the words. Because the gynaecologist said that he could not do any more for me I thought I was about to die. I felt in a bubble with the world going on around me. I met my husband in the car park and blurted out those 3 words and burst into tears. I felt so lonely and that I was the only one in the world with leukaemia. I could not explain to family, friends and work what I did not understand myself. I can still replay that day like a film with me feeling the emotions. When my husband and I saw our GP she said I would be put on quarterly blood tests. I do not remember what else she said. I felt I was seen as ‘Erica with leukaemia’ for a long time and not just ‘Erica’. People did not know how to be around me. My emotions were on high alert for a very long time and they come back immediately I have medical appointments.

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Thank you for sharing your story Erica, I can only imagine the emotions after being told the gynaecologist ‘couldn’t do any more for you’ - you do a wonderful job supporting others and raising awareness :hearts:

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You may have seen this story on our social media page over the weekend, from a young woman called Cerian who was diagnosed with stage 4 Hodgkin Lymphoma talking about her experience of being diagnosed, and her feelings around not knowing the symptoms of blood cancer.

https://bloodwise.org.uk/blog/why-i-wish-i’d-known-symptoms-blood-cancer-i-was-diagnosed?fbclid=IwAR0t6F3QMMpznMLepMrjKX2QNQzaFMXbZVXNtDOWsk9uBHTFiGfkS57tWT4#utm_source=facebook&utm_medium=organic&utm_campaign=awareness_day&utm_content=lymphoma_awareness_day

Does this sound familiar to you?

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Hi Alice

In my case about 13 years ago, while living in another part of the country, I had to have a medical examination for a new job and in the routine blood analysis they found I had a low white blood cell count. On reflection this wasn’t surprising as I had been suffering from recurrent infections for quite a while. My GP was very good and monitored things every couple of months and after a while when things weren’t improving I was referred to the haematology department. They carried out a a number of tests (with the exception of a BMT) and concluded that it was an idiopathic neutropenia and my GP should just continue to manage it. In 2014 I was hospitalised with a rather aggressive respiratory infection that was probably exacerbated by the neutropenia. In early 2015 we moved back home and my new GP was very proactive again in monitoring my blood counts and if I developed infections ensured I was prescribed appropriate antibiotics. As the counts weren’t improving after a couple of years she referred me to the haematology department at our local unit. The approach this time was very very different and this time including all the usual tests I was also had a bone marrow biopsy at the end of 2017. I was also started on filtration to try to boost the WBC. The biopsy results revealed that although the number of blasts were still low the cytogenetic test of the bone sample had revealed I had an extra 8 chromosome (or I was trisomy 8 as my consultant described it). I was told that I had myelodysplastic syndrome which was not so common for someone of my age (54). I was also told that I was a lower risk category so the median survivability was 8 years. I remember at the time saying to my consultant “well that’s the median and I fully intend on being in the upper quartile”. My consultant was brilliant and took the time to discuss with me in detail everything about the condition and what the long term prognosis was likely to be. I guess having been scientifically trained myself I was able to understand much of this and could ask many of the relevant questions. Unfortunately within a week of my diagnosis I contracted the H3N1 flu virus which then developed into sepsis and was hospitalised for nearly three weeks. This really knocked my confidence and post this episode I have had problems with fatigue which may be down to the MDS or could be related to post sepsis syndrome. My employers were incredibly supportive and provided me with access to counselling which really helped me with acceptance issues I was having to deal with. My work colleagues were also very supportive too on a range of levels. Most importantly I have a brilliant family and we are always there for each other. I’m currently continuing on the filgrastim and see my consultant every 12 weeks. The team we have at our local haematology unit are absolutely world class both in terms of their clinical expertise but also on their communication abilities and overall humanity. Moving forward from my diagnosis, I’ve had to change how I approach my life. I’m still working but I had to step down as Head of Department and have significantly curtailed the travel I used to do. Like so many others on this site fatigue is a big issue for me but I have (ever evolving) strategies to deal with this. I also take time to enjoy things I like doing. I’m also regaining my optimism about being in the upper quartile when it comes to my long term prognosis. All in all I have much to be thankful for.

All the best,

Peter

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My goodness @Erica, the gynaecologist could have handled that a little better! How terrifying for you to walk out not having a clue what your diagnosis meant. I hope things are a little easier for you now and you don’t always just feel like ‘Erica with leukaemia’ you are sooooo much more than that xx

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Hi @Dyslexicprof it sounds like you had a long road to diagnosis, but that your consultant now is great. It’s really interesting to hear people’s diagnosis experience and how it has changed their perspective on things. I’m pleased to hear that you have such great support around you. You sound really positive. Wishing you all the best, Lisa

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Hi @Alice_BloodCancerUK thanks for starting such an interesting thread. It’s always interesting to hear how varied people’s experiences are when it comes to diagnosis. It shows how random it can be, depending on the GP, hospital etc.

I think Hugo was pretty average for an ALL diagnosis. He had symptoms that gradually increased for around 5 weeks before we were referred and sent for a blood test - which then showed the leukaemia. During that 5 weeks we had 3 trips to the GP and one phone consultation with them, 1 hip x-ray, 1 diagnosis of irritable hip syndrome and 1 diagnosis of a virus. Unbeknown to me the referral made at the final GP appt was to oncology. I was told it was just to paediatrics. I often think about what could have happened if she hadn’t suspected cancer at that point. A few more days and he could have picked up an infection which could have proved fatal for him at that point. Once diagnosed it all moved very quickly and treatment started almost straight away. It’s sometimes hard to believe that his seemingly innocent symptoms turned out to be blood cancer.

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Cerian’s experience was similar to mine. Many GP appointments, but he was monitoring my blood pressure (I suffered white coat syndrome), and giving tablets and creams for rash/itching. I had blood test which showed high LFT, and he thought I was be economical with the truth re alcohol. A hospital stay, and the doctors diagnosed pericarditis, but ignored the rash. 5 months later, a different hospital and cardiologist, who was very thorough, admitted me, and involved cardiothoracic and haematology depts. From then on things moved very quickly but I was a challenging patient and spent 2 years having different treatments. My GP was amazing, but was frustrated by the lack of care at the first hospital

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Thanks Lisa. As I said, I feel lucky to have so much support around me and that helps in keeping positive as well.

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Wow Peter you’ve been through a lot up to and after your diagnosis! It’s lovely to hear how well supported you’ve felt since, from work and your haematologist. Your outlook and positivity is great!

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Thanks for your message Dawn. I think being positive is made so much easier because of all the support I have from my family, friends, work colleagues and my first rate medical team.

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Hi, I’ll start the new round of experiences of diagnosis.
In March 2018 I went to donate blood. I remember watching the test sample sinking oh so slowly in the test tube, it seemed very odd. I was told that I was anaemic and was given a printed sheet to take to my GP. A week or so later the GP said I’d got hypothyroidism, vitamin B12 deficiency, possible coeliac disease, iron deficiency, high cholesterol. My results were odd, she wanted me to have another test, electrophoresis, “although she was sure I’d hear nothing more about this”. I searched the internet to see what such a test was for and found it was looking for markers of a cancer I’d never heard of, multiple myeloma. An incurable cancer, with a prognosis of just a few years. I felt pretty well, I’d been a bit lazy, and caring for elderly parents with dementia had been stressful, but I certainly wasn’t ill. When I had a phone call from the GP surgery two days later asking me to go in, on a Friday afternoon, I immediately knew what I’d got. I had read enough to ask the GP specific questions for specific results to know there was little possibility I didn’t have myeloma, and active myeloma at that. I asked the GP about life expectancy given I felt so well, and was told that he’d known people who’d gone from being well to bring dead in 3 months, which in hindsight I think he said as a way of saying that we never know how long we’ll live, but I took as meaning I could be dead in 3 months. My husband was away all weekend and I was paralyzed with shock, trying to plan out what I needed to sort out in my final 3 months.
I was seen by a haematologist within days and had a series of scans, a bone marrow biopsy etc before my formal diagnosis six weeks later. I was totally prepared for being told that I had multiple myeloma, but had I not have been, I would have been made aware by the reverence and concern being shown by the nursing staff before I actually got into the consultation! The only thing that shocked me about my diagnosis was that the consultant said " I’m sorry I can’t prescribe lenalidomide", which at that stage I’d never heard of, although I must have sounded quite informed. Needless to say, that led to further searches about myeloma treatments and then to have a second opinion with someone who could prescribe lenalidomide, (although I had to co-pay to get it). Two years later, I am feeling just as well as I did before diagnosis, I’ve had 5 rounds of triple therapy, a stem cell transplant, surgery to remove a thyroid tumor and I’ve had to rely on India to obtain the lenalidomide maintenance that currently keeps me in remission.
Myeloma is an individual disease, mine is atypical in that I have no known bone lesions and so far haven’t had infections. I won’t push my luck though, like all of us I’m currently being ‘shielded’ trying to avoid the pandemic.

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First of all, welcome to the forum. You will find we have a wide range of experiences, some that are individual, but many that we have in common. I hope that you find some topics that interest you.
You have had a busy two years, from going to donate blood, through diagnosis, and then various treatments. If you need any further information Blood Cancer UK website has patient information, and the support line is there if you would like to speak to someone.
I hope you continue to have bonus days/ months/years (my thoughts after a SCT 11 years ago)
Take care of yourself

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Hi @Maple and a great big welcome to our forum and thanks so much for telling us your diagnosis and last couple of years. As I read about you going to donate blood and then suddenly you end up being diagnosed with blood cancer the feelings of fear and shock came whizzing back to me. I had a gynae op and I healed, but still felt so ill and the gynaecologist did blood tests and came back and said ’ I have never had to tell someone this before but you have chronic lymphocytic leukaemia, I cannot do any more for you go back to your GP.’ I thought that meant that if he could not do any more for me that my days were severely numbered. Anyway that was 2003 and I am still here on watch and wait and managing my symptoms, mainly fatigue. I look forward to hearing more from you. Yes, stay safe.

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@Maple a big and very warm welcome to the forum! and thank you so much for taking the time to write this post and for being so open about how you feel. I echo what @Erica and @Pisces56 have expressed, it sounds like you have been through so much in the last 2 years. I can only imagine what a shock it must have been after initially going into to do such a good deed and donate blood. How are you? How have you been doing during these times?

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My diagnosis was in 1992 at the age of 35, so I realise I have done very well. I had various symptoms such as recurrent infections, unexplained weight loss and severe headaches. I went to the GP who decided to do a blood test to see if I had glandular fever. When I went back for the results he said, “Well, you haven’t got glandular fever.” I replied “Oh, that’s good” and he said “Actually I think I’d prefer that you did have glandular fever!” He went on to say that there were some abnormalities with my blood cells and I was to have an urgent appointment with a Haematologist for further investigations. All I could think at that time was that somehow I had got AIDS! After a bone marrow and trephine biopsy I was told that I had an MPN with features of myelofibrosis and ET. I was started on Busulphan as I had an extremely high platelet count and then was transferred on to Hydroxycarbamide, which I took for many years. About 5 years ago I noticed that my platelet count was remaining at a more normal level but my Hb was dropping. After another bone marrow and trephine biopsy I was told that my disease had transformed to myelofibrosis CALR positive. Unfortunately it has now reached the final stages and I am on regular blood transfusions and I take Ruxolitinib to manage my symptoms and Danazol to try to boost my red blood cell numbers. My main issues now are extreme fatigue, anaemia symptoms and quite severe bone pain. However, I realise that to have had an MPN for 27 years is quite unusual. I am very grateful to my medical team, including my GP, who have given me such excellent care. At the time of diagnosis there were no CNS’s and I was offered no information booklets or help apart from my GP who took a special interest in my disease as she realised I was young to be diagnosed with this at the age of 35. It was left to me to undertake any research and find out all I could about the disease. I am pleased things are so different now for those recently diagnosed!

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Gosh @Willow and @Maple it is interesting the routes and emotions we have gone down to get our diagnosis. @Willow, I was diagnosed in 2003 and at that time there was hardly any information, let alone support, out there and I was silly enough to read something on the internet that gave me 5-10 yrs life expectancy. Well, I immediately wrote my will and organised my funeral, especially the music. The only time I had heard the word Leukaemia was in children and at that time it was usually terminal. @Willow in 1992 there can have been hardly any information or support out there for you and no internet and as you say it was the time when Aids was very prominent. The words blood cancer were never mentioned and obviously MPN with features of myelofibrosis and ET would never have been heard of, it must have been a scary, isolated time for you for many years and at only 35 yrs old. We are so lucky to have Blood Cancer UK with all it’s reliable information and support and this forum to share and be support each other on. Take care and stay safe.

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Thank you for your welcome. As I regularly say to my consultant, I feel fraudulently well. My immune system suffered collateral damage during my stem cell transplant last year, but that’s been asymptomatic so far.
And like all here, I’m doing my best to start away from coronavirus. Hope you all stay safe.

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Hi, Maple, don’t feel fraudulent, perhaps we cannot always tell and feel what is going on inside us. A stem cell transplant is a really big thing, just think what you have gone through medically, emotionally and physically and I believe it takes a long time for things to heal and as you say your immune system has suffered collateral damage. Yes, staying safe is the main thing.

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