Excellent coverage on the front page of today’s Daily Mail about misdiagnosis/late diagnosis of rare cancers. Congratulations to Andrew of the Rarer Cancers Foundation for their study which has prompted this exposure.
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1 in 4 cancer cases missed: GPs send away alarming number of patients, delaying vital treatment
I wonder how many of us found out about our cml by fluk. I signed up to a slimming programme which required a blood test - from this blood test they asked if i had a cold and I said no and they were the ones who suggested I get my bloods checked by the Doctors. I had been seeing my Doctor as I was getting night sweats but they tested for menopause and because I was feeling so low because I was tired they wanted to put me on anti- depressents. At the time I keep thinking Ok I have two children Im a mum and this exhaustion I was feeling was probably what every mum felt so I soldiered on.
When I told my doctor about the blood test and that they said to see my doctor - the doctor then did do a blood test and they carried on doing blood tests for six months until they decided that perhaps they should refer me and that is how I found out I had Leukaemia. So in a way I thank my lucky stars that I went to this diet club ( I only needed to loose 7lbs) which I lost and I thankfully found out early enough that I had Leukaemia.
I am now doing really well, I am on dasatinib and the drug is doing a fantastic job - so I am thankful again
I have a similar story, over two years of visits to GP and a stay in hospital didn't find my Leukaemia. In fact it was me who said I had lukeamia when I started getting very bad spontaneous bruising. Even then there was a 9week wait for an appointment with a hematologist.
The GP surgery had never seen another case of CML, but I really don't understand how they missed 18 months of rfaising white counts!!
The worry now is that GPs will have no incentive to refer on quickly (it will come out of their budget), and without that many others will suffer in the process.
Pennie
I also had a similar experience. I have been going to the doctors with night sweats and tiredness for years. Every time i had a blood test my count was up and they kept telling me it was down to my underactive thyroid. Then i get a numb leg, sent for blood tests on the friday by the monday i was being told i had CML. still just coming to terms with it now as its only been a week since dx
Naomii x
I think i was quite lucky. I had been feeling tired for a while and going to the loo a lot so thought I had diabetes. Went to my doctor and asked for a blood test which was done on the Wednesday, on Thursday I came home to 5 messages on my home phone from my doctor trying to get in touch with me and on the Friday morning i was in the haematology dept at the local hospital getting an unconfirmed diagnosis which was confirmed the following week. That was 3 years ago.
I really think they were on the ball at my GP surgery and have been pretty good ever since - the hospital less so!
K
I'm another lucky one - I'd been seeing the GP for backache, and when the anti-inflammatories and exercises made no difference, he took some blood. That same evening I was contacted by the hospital and things moved very quickly from there - I was on Spirit II (imatininb) within about 10 days, and have been very well looked after since then.
Olivia
I was diagnosed in Sept 2009. I had a swollen and very bruised and throbbing finger. A friend advised me to go to the dr but I felt it was ridiculous to do this for a bruise ! A second friend urged me to do the same so I made an appt with the practice nurse who called a GP to look at it. Fortunately for me she asked for a full blood count the following day and 3 days later I was at the haemotology dept of the hospital for BMB quickly followed by Imatinib. They acted so quickly thankfully.
It obviously varies across the country.
regards
Chrissie
Darrens was missed for a long time, he went with lumpy bruises twice and was told they were cysts. He went about night sweats and chest infections.
He went the last time with me because he would come home from work and fall asleep on the livingroom floor by 6pm, covered in bruises, night sweats, diahorra and weight loss. They still were just testing for wheat allergry!!
He had the test wednesday morning, had a call 10pm weds night and told he had Leukemia on Thursday morning. They thought he had AML at first as counts were so high :(
Hi Lisa
That does seem bad - it is concerning that the practice of GPs in dealing with persistent complaints is so variable. In my own case, I went to the doctor a couple of years before I was diagnosed with a fairly non specific complaint. As a precaution, they did a blood test. It showed counts at the top end of normal in terms of both platelets and WBC but no alarm bells rang so off I went. That was fair enough I suppose. Two years later I went back with a recurrance - my GP was diligent and we did another test. This time, all the things we were looking at (and had looked at before in relation to my "complaint") were still normal but the WBC was raised and platelets considerably. Fortunately my GP is pretty thorough so immediately phoned my local hospital, with me in the room, to enquire. I was seen by a consultant 5 days later - I was lucky to be caught early and have a GP who didn't hesitate to screen me despite my having no obvious CML symptoms. With hindsight I probably had CML two years before but the counts were not yet above normal.
Darren's case is obviously different - I hope he is doing well now..
Clearly leukaemia is relatively rare but GPs really ought to know the symptoms and someone with any kind of persistent undiagnosed complaint should be offered and given a blood test. It can tell so much.
My story fits this thread. Dx back in Oct 05. I had been going to my GPs surgery on and off for about 4 months with a persistant cough, saw various locums who listened to my chest and couldn't work out what was causing it. Finally got dx when I saw my named gp - whi is very good- because I could feel what felt like a lump in my stomach, it was my enlarged spleen. I had also lost weight but I had been on a diet, however, I'd lost more than dieting alone would have caused. My GP sent me for an ultrasound that same day as she thought it was ovarian cancer. She also drew blood this was mid week. The following Tuesday I saw my local hospital for a BMB and was on Hydroxy. I can't fault the care I've received from the time I saw my own GP, but I wish they'd done bloods earlier to try and resolve the cause of my coughing. At time of dx dr Hill thought I'd probably had CML for between 6 and 12 months.
Marian
I had been diagnosed with another condition called Behcets 5 months prev to my CML diagnosis. That was in Oct 06, in Feb 07 i was put on a drug called MMF Cellcept. I was given a list of all the side effects this drug could cause, one being cancer. At the time I didn't have any concerns and took the drug, as I was in so much pain with my Behcets. I had to have fortnightly blood tests whilst on this drug, to check my counts etc. I had only been on it 1 month, and the nurse testing my blood asked if i was on steroids as my white cells were slightly raised, the answer was no! A few days later I received a call from my consultant telling me he had arranged for me to have a BMB the next day. Three days later I had an appointment with hematology and was given the all clear no problems were found, I skipped out of the hospital. I was called back 4 days later to be told a mistake had been made and I infact had CML.
So in the beginning i wondered if the MMF caused the CML? Or if i should be thankful i was on this medication and was getting regular checks and CML would have happened anyway. The docs say MMF was not the caused and is often used after transplant anyway... but they would say that!!
Anyway that was 4 years ago this month, I am still on Glivec and doing great and the CML is undetectable!!
Liz x