Non-existent awareness of leukaemia symptoms “extremely worrying” – as new figures show people in the South East don’t know bleeding, bruising, fatigue and infections are a sign of the blood cancer
Leading UK leukaemia charities launch memorable new campaign to get people “parroting on” about the symptoms for Blood Cancer Awarness Month in September
People in the South East are being urged to take notice of the symptoms of leukaemia, as new research published today shows that none of those surveyed in the region were able to identify ALL four of most widely reported symptoms[1] – fatigue, bruising, unusual bleeding and repeated infections.
Leukaemia is a form of blood cancer affects people of all ages and 28 people receive a leukaemia diagnosis every day in the UK – that’s over 10,000 every year. Overall survival for leukaemia stands at just over 50%[2] – making it one of the most deadly forms of cancer.
Early diagnosis could saves lives[3], yet the recent public survey by leukaemia charities Leukaemia UK and Leukaemia Care, found that over that almost half (49%) of respondents from the South East could not recognise ANY amongst the four most widely reported symptoms of the disease[4], which kills 5,000 people a year in the UK, and which is often diagnosed too late.
The two charities are collaborating on an important campaign, #SpotLeukaemia, to raise awareness of the symptoms ahead of Blood Cancer Awareness Month in September. Blood cancer is the fifth most common cancer and third deadliest.
In a new film released today Leukaemia Care and Leukaemia UK have called on the expertise of ‘Henry’, a talented Macaw parrot, to try to make the symptoms of leukaemia memorable. The ad sees Henry using a range of objects to create a catchy and repetitive ‘Spot Leukaemia rap’ featuring the symptoms of leukaemia.
People who are concerned about any of these symptoms – fatigue, bruising, unusual bleeding and repeated infections – are being strongly urged by the charities to contact their GP and request a blood test. More information is available on the Spot Leukaemia website at www.spotleukaemia.org.uk.
The ad focuses on the top four symptoms. Other symptoms of leukaemia include fever or night sweats, bone or joint pain and swollen lymph nodes.
The charities are now calling on people to start “parroting on” about leukaemia and its symptoms, share the video (https://youtu.be/UMRTMKVvYhQ) with friends and family, and visit the Spot Leukaemia website for more help and advice.
Awareness of the symptoms of leukaemia is low in the South East
Only 9% of respondents across the South East recognised that repeated infections – one of the most common symptoms of leukaemia – are a symptom, only 29% said unusual bruising is a symptom and only 11% said unusual bleeding is a symptom. Only 47% of respondents were not able to recognise fatigue as a symptom – which is often the most likely symptom to be identified by those later diagnosed with leukaemia.[5]
South East case study:
“It took a year for me to recognise I had the symptoms of leukaemia but had I known about Spot Leukaemia I might have gone to the doctors quicker.”
Melanie Joy Hanni, from St Albans, was just 31 when she was diagnosed with chronic myeloid leukaemia, a blood cancer that commonly affects those aged 60 and above. Now, age 36, Melanie talks about how she brushed off her symptoms for a year before seeing her GP.
“I decided to see my GP because I was having daily headaches which were getting worse and worse, making work very difficult. I also had a full body rash that I thought was a food allergy; I was constantly breathless when trying to do everyday activities, such as changing a duvet cover or climbing upstairs. I was constantly tired too, but I thought it was because of my thyroid (I have had thyroid problems since my late teens). I was getting viral infections a lot more frequently than I did before, and I was also losing a bit of weight (which, like most people out there, I thought was a great thing).
I took some time to see the GP, about a year since the rash started. I took this long because, even though I had all these symptoms, I genuinely thought they were unrelated and they didn’t bother me that much. I thought the headaches were due to stress of learning new skills at my new job; the rash I thought was a food allergy; the tiredness, I thought was because I was out of shape; the weight loss I was happy about, because I thought walking 5km a day was finally working. As I mentioned above, I was a bit tired, but I have felt that before as I have been hypothyroid since my late teens, so I never thought much of it.
During the appointment the doctor measured my blood pressure and it was very high. This had never been the case for me; I’d always been the low blood pressure type of person, the one who gets dizzy when it’s too hot and so on. As the high blood pressure was very unusual for me, especially considering my age – I was 31 at the time – my doctor asked for some blood tests just to check if the high blood pressure that runs in my father’s side of the family had caught up with me or if something more was going on.
I took a long time to do my blood tests as the phlebotomy clinic in my town is only open during times that I had to be at work, and I didn’t want to be late or leave work early, especially as I had just started working at the office recently. On a Monday, I woke up earlier, got the blood tests done and went to work. At around three in the afternoon, I received a phone call from my GP. She told me that one of the results in my full blood count wasn’t within the normal guidelines and that they had scheduled an appointment with a haematologist at the hospital for me.
Needless to say, I didn’t sleep much that night, I was terrified about what it could be and feared it could be leukaemia (because that’s the only thing I could think of that would explain such a fast referral to a haematology department).
The next day, it was 6 June, I went to my appointment, got blood tests done before I saw the consultant and my fears were confirmed. I had chronic myeloid leukaemia (CML). I didn’t even know there were different types of leukaemia, much less that there are chronic ones.
I found out during the appointment that some of the symptoms I was having, and just shrugged off, were actually signs of leukaemia. These were: excessive sweating, especially at night (mine was all the time), tiredness (I thought it was just because I was doing more exercise), breathlessness (I had pinned this down to being out of shape), a rash (I thought it was a food allergy) and unintended weight loss (I thought my diet and exercise were finally working!). Had I known all these symptoms combined could mean blood cancer, I would have sought out my GP a lot sooner.
In hindsight, I can see that I really shouldn’t have delayed getting my blood tested and that the symptoms I had were not caused by individual things, as I thought, but were all part of a bigger problem. Thankfully, CML in its chronic phase is manageable by taking chemotherapy tablets at home and having blood tests every three months (sometimes more often). Also, most people go on to live a normal life-span on the current chemotherapy treatment – it also doesn’t make you totally bald, which is a plus! Even though the current treatments do have loads of side effects, it’s good to not have to travel every few days to a hospital to get chemotherapy drugs pumped into me, and in a way I’m thankful I have CML and not one of the more aggressive types of leukaemia.
Regarding how life is now and the treatments I’ve had, the treatment hasn’t been easy for me.
At first, I was treated with hydroxycarbamide and allopurinol (to avoid gout that can happen due to the rapid breakdown of cancerous cells). The idea was to bring my white cell counts down as quickly as possible while further testing was conducted. The first two weeks were bearable, but I got more side effects as the drug built up. I had so much nausea and zero appetite. I lost about 20lbs in 5 weeks, it was a bit frightening. I was still managing to work at this point. I was determined to keep life as normal as possible.
After the results came back positive for the Philadelphia Chromosome, I was put on imatinib 400mg. I was told the side effects would be milder, but this wasn’t the case. It gave me terrible muscle cramps and joint pain. It also affected my stomach, causing gastritis, vomiting and diarrhoea. After four weeks on imatinib, I was forced to take leave from work, as I was in too much pain and had too much brain fog to function. The doctor kept me on imatinib for around four months, but I was intolerant to it.
I was switched to nilotinib, but it also gave me terrible leg cramps, fatigue, triggered daily migraines and a full body rash that drove me crazy with its itchiness day and night. All these side effects were out of control, even with other medications to help control it, but again, after a few months on it I was considered intolerant and switched to bosutinib.
It is now a little over a year since diagnosis, and I’m still taking bosutinib, but the side effects are still too intense and preventing me from having quality of life, especially the fatigue, brain fog and very intense muscle cramps and bone pain. I’ve recently been referred to one of the centres of excellence in CML, Hammersmith Hospital in London. I met the lead consultant for this hospital during a patient meeting sponsored by Leukaemia Care, and she said they can offer me more treatments that might suit me better, considering how sensitive my system seems to be to CML drugs. I asked my current consultant to refer me after the meeting at Hammersmith.
Now I’m under care at Hammersmith Hospital in London. I am happy to see a consultant who understands and specialises on how my body responds to the TKI treatment. I’m in the group of 10 per cent of patients who get severe side effects from the TKI treatment, but luckily I respond well and am in MMR (major molecular response). I am still unable to work but have since got a dog and moved to another home. I have had more side effects develop during this time and my mobility has been greatly reduced, I now require at least a walking stick to get around because of leg pain and mostly use a mobility scooter outdoors, this is still under investigation and we don’t know yet if it’s caused by the CML treatment or if it’s just something that developed on its own. I wish I could say I’m in treatment free remission (TFR) but I haven’t quite gotten to the point where I can try that yet. Hopefully in 2024.
Other than that I volunteer on Leukaemia Care’s CML patient panel and have used the Ann Ashley Counselling fund. It helped so much I’m still doing counselling twice a month to help with becoming disabled.
Unfortunately the constant treatment leads to constant side effects and I am not able to do many exciting things. You see stories of people trying to live life to the fullest after a cancer scare or diagnosis but unfortunately that hasn’t been me. During the week I mostly listen to audiobooks, crochet and spend time with my dog. I feel like my relationships have deepened and I really appreciate that.
I think the biggest change is accepting that I’m now disabled. Both because of the severe fatigue brought on by the cancer treatment and because of nerve problems in my legs that are still under investigation. I think it was around April 2022 that I realised that I needed to start using my mobility scooter more. The story of how I got the scooter was lovely. I had an outing with a very close friend and her family to a petting farm, but I’d been having bad leg cramps at the time. My neighbour offered to lend me her mobility scooter so I could go, and it helped so much! I was able to be out all day and not get tired and not have to worry “if I walk to that bit will I be able to walk back?”. My friend Viviane noticed this and organised a mini-crowdfunding with friends and family taking part in it. They then got me my very own mobility scooter last year!!! It’s hard to overcome internal ableism and accept that one needs help getting around. I’ve always been very independent and it was difficult to accept that I could no longer trust my body to get me from A to B. But through therapy and work on my own biases I have now accepted that it is much easier to use the mobility aids available to me and that means I can do more things and they’re actually freeing rather than binding. I thought I had to walk as much as I could to maintain my mobility and the truth is that was just making my symptoms worse, so actually accepting that my life is now different has been very good. Now I’m trying to teach my dog to not run in front of the scooter so I can hopefully take her out for walks using my scooter.
If I had seen the Spot Leukaemia campaign when I had all those symptoms that I pinned down to other things, I wouldn’t have taken so long to see the GP and would have possibly been diagnosed a lot sooner. If I had known about the signs and symptoms of leukaemia I’d likely have been diagnosed a lot sooner than I was. Thankfully I was still diagnosed in the chronic phase, but I took my sweet, sweet time to go and get the blood tests the doctor asked for. I thought I was just stressed (hence the symptoms and headaches). If I had known the fatigue, repeat infections, rash, easy bruising, weight loss and so on were symptoms of a potential cancer I’d have been a lot quicker about going to the doctor. I always share your spot leukaemia posts in my social media accounts. I hope nobody needs that information, but they should have it in case they or a loved one starts presenting symptoms. I also really appreciate how Leukaemia Careworks on informing GPs about the different types of leukaemia. As doctors who see everything and everyone I can see how the subtle signs of leukaemia could be easily missed.”
Melanie’s symptoms of leukaemia were:
· Headaches
· Full body rash
· Repeated Infections
· Fatigue
. Excessive sweating
. Weight loss
Are you currently experiencing similar symptoms to Melanie? Request a blood test from your GP.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org. Early diagnosis saves lives.
Nationally, those who are over 55 also underestimate their risk, thinking that leukaemia is a childhood disease. Only 11% of over 55s thought that they had the greatest risk of leukaemia[6], whereas in reality cases rise sharply after the age of 55 and 38% of all new cases occur in the over 75s.
Fiona Hazell, Chief Executive of Leukaemia UK said, “It’s extremely worrying that less than 1% of Brits are able to identify the most common symptoms of leukaemia, when 28 people are diagnosed each day in the UK. People underestimate their risk by thinking that leukaemia is a childhood disease. In reality, both incidence and mortality rates rise sharply after the age of 55. Raising awareness in this age group is critical in order to treat it early and effectively; and ultimately to improve survival rates overall.”
A lack of awareness of which age groups are most at risk from leukaemia is also concerning, with 43% of respondents thinking that leukaemia is most common in the under 24s.[7]
Whilst it is true that leukaemia is the most common type of childhood cancer, leukaemia incidence rates rise sharply after the age of 55 and 38% of all new diagnoses occur in those over 75.[8] The survey found that only 2% of Brits think that leukaemia is most common in those over 75. The Spot Leukaemia campaign particularly wants to increase awareness among those who are over 65, as this age group is the most likely to be diagnosed with leukaemia.
Zack Pemberton-Whiteley, Chief Executive of Leukaemia Care said, “To hear that less than 1% of the UK public are able to identify the four most common symptoms of leukaemia is extremely worrying. Early diagnosis of leukaemia can improve survival. With over 10,000 people being diagnosed every year with a leukaemia, this shows just how important it is to continue to raise awareness of the signs and symptoms and how much work needs to be done.
“We know that our new Spot Leukaemia video may ruffle some feathers but in order to raise awareness we needed to create something that will fly. It’s crucial that if you think you have fatigue, bruising or bleeding or repeated infections that you contact your GP and ask for a blood test. It’s as simple as that and we will continue to parrot-on about it.”
To watch the campaign video visit www.spotleukaemia.org.uk
About Spot Leukaemia
September is Blood Cancer Awareness Month. Leukaemia is a blood cancer and around 10,000 people are diagnosed with leukaemia each year in the UK. Less than 1% of Brits are able to identify the four most widely reported symptoms.[9] Two-fifths of UK adults cannot recognise any of the four most widely reported symptoms.[10] Leading UK leukaemia charities, Leukaemia Care and Leukaemia UK, are raising awareness of the signs and symptoms of leukaemia through their #SpotLeukaemia campaign. If you are experiencing any of the following symptoms and you think something might not be right, contact your GP and ask for a blood test or call our freephone helpline on 08088 010 444.
The most common symptoms of leukaemia are:
- Extreme tiredness (fatigue)
- Bruising
- Unusual bleeding
- Repeated infections
- Fever or night sweats
- Bone or joint pain
About the Survey
The survey was conducted by YouGov Plc. on 4th-5th August 2022 using a representative sample size of 2134 adults from across the UK. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).
About Leukaemia Care
For over 50 years, we have been dedicated to ensuring that everyone affected receives the best possible diagnosis, information, advice, treatment and support.
We are here for everyone affected by leukaemia and related blood cancer types – such as myelodysplastic syndromes (MDS) and myeloproliferative neoplasms (MPN). We believe in improving lives and being a force for change.
To do this, we have to challenge the status quo and do things differently.
Find out more about Leukaemia Care here: www.leukaemiacare.org.uk
About Leukaemia UK
We are Leukaemia UK. We believe research has the power to stop leukaemia devastating lives.
Despite decades of incredible progress, only half of leukaemia patients live longer than five years after their diagnosis[11]. We won’t stop until we change this.
Bringing together the leukaemia community, we will accelerate progress through life-changing research, doing everything we can to make sure that the next person with leukaemia has the best possible experience of diagnosis, treatment and care.
To find out more, including how you could help support the life-changing research that Leukaemia UK funds, and the charity’s advocacy work, visit leukaemiauk.org.uk.
[1] Less than 1% of respondents could identify the following four symptoms of leukaemia: fatigue (extreme tiredness), unusual bruising, unusual bleeding, repeated infections. Survey by YouGov Plc. on behalf of Leukaemia UK and Leukaemia Care, 4th-5th August 2022 using a representative sample size of 2134 adults from across the UK.
[2] 53.5% – 5 year survival rate across all leukaemia types and age groups, Office for National Statistics, Cancer survival by stage at diagnosis for England, 2019.
[3] NCRAS http://www.ncin.org.uk/cancer_type_and_topic_specific_work/cancer_type_specific_work/haematological_cancers/
[4] 42% of respondents could not identify any of the following four symptoms of leukaemia: fatigue (extreme tiredness), unusual bruising, unusual bleeding, repeated infections. Survey by YouGov Plc. on behalf of Leukaemia UK and Leukaemia Care, 4th-5th August 2022 using a representative sample size of 2134 adults from across the UK.
[5] Survey by YouGov Plc. on behalf of Leukaemia UK and Leukaemia Care, 4th-5th August 2022 using a representative sample size of 2134 adults from across the UK.
[6] Survey by YouGov Plc. on behalf of Leukaemia UK and Leukaemia Care, 4th-5th August 2022 using a representative sample size of 2134 adults from across the UK.
[7] Survey by YouGov Plc. on behalf of Leukaemia UK and Leukaemia Care, 4th-5th August 2022 using a representative sample size of 2134 adults from across the UK.
[8] Cancer Research UK, leukaemia diagnosis by age, 2016-2018
[9] Survey by YouGov Plc. on behalf of Leukaemia UK and Leukaemia Care, 4th-5th August 2022 using a representative sample size of 2134 adults from across the UK.
[10] Survey by YouGov Plc. on behalf of Leukaemia UK and Leukaemia Care, 4th-5th August 2022 using a representative sample size of 2134 adults from across the UK.
[11] 53.5% – 5 year survival rate across all leukaemia types and age groups, Office for National Statistics, Cancer survival by stage at diagnosis for England, 2019.
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