The Observer carries a front page story today that around 1900 patients a year who have cancer are misdiagnosed by their GPs. Breast, bowel and lung cancers, as well as some childhood cancers are most likely to be missed. The national cancer director Mike Richards has warned about the consequences of these delays in terms of more aggressive treatment and loss of life.
There aren’t any official statistics on the scale of the problem but the figures quoted are taken from an unpublished study by the Dept of Health and the National Patient Safety Agency.
Mind you many of us with breast cancer know this already as the recent discussion about Kylie Minogue’s misdiagnosis showed.
Jane
Sadly too true Jane,
My father donated bone marrow to his sister who had leukemia, sadly she died. One month later my father complained of back pain & was treated for sciatica for over a year, only to find out after an xray he had wide spread cancer, died 4 months later age 47. My mother was treated for irritable bowel syndrome for well over a year, then on going to the doctor one Saturday morning she was told she was depressed. I saw her on the Sunday & she looked irritable and bordering drunk as she couldn’t walk straight, on the Monday morning really concerned as no improvement called gp out who told me to take her to A&E, so off we go me & mum’s partner. Tests were carried out her calcium levels were that high from cancer they said she was lucky to be alive, it was so wide spread, my mother died 5 weeks later, age 55. I was told at 29 i was to young to get cancer! how wrong they were, i don’t & never will trust gp’s. I believe many are misdiagnosed & as a consequence endure much suffering.
Louise xxx
Hi Jane
Thank you for posting this info. I note the article goes as far as to say that late diagnosis is seen as a major reason why the UK has poorer survival rate than some other countries in Europe. This is shocking news but I’m glad it’s coming out of the closet.
I’ve been aware of this since my misdiagnosis in 2005. However, it hasn’t been easy to get any breakthrough.
Following is the link I was sent:
guardian.co.uk/society/2008/apr/13/nhs.cancer1
I hope you are keeping well.
Regards.
Jeannie
interesting that it’s mainly women and children who get misdiagnosed and that breast cancer is a particular problem although as it’s the most common kind of cancer that must make numbers of misdiagnoses higher. I didn’t get misdiagnosed by my GP, I was misdiagnosed after having the triple assessment, I wonder if they do an analysis in cases like mine. If they do, I think they should give the results to the patients of the investigation. In fact I think they should do an analysis of every case and give feedback. At least then you’d think they would learn from it. Six months of hanging about waiting to know did my head in, especially as I rang the GP surgery the day after finding the lump to get an appointment as soon as possible
Mole
Hi
My mum was being treated for stomach acid for about 6 months in 1988 before we had had enough as she was in a lot of pain. It was stomach cancer and she had it in liver, pancreas, stomach and spleen. For some reason they opened her, did a biopsy, and closed her. Gave her 3 months but only lasted 6 weeks. She was 58
Liz xx
my grandmother was told she should eat more roughage again after having symptoms of stomach cancer for ages. They opened her up and gave the family the news, but not her, that she had at most six months. She lived 2 years with everyone else knowing she had cancer except her. She died in about 1979
they didn’t have MRI or CAT in those days though
So many people affected by the lack of knowledge of GPs! I have lung cancer as well as breast cancer - it should have been diagnosed 2 years earlier. I had blood streaked mucus arising in my throat - GP asked if I smoked, when I said no, he said no cause for concern. About the same time I was not feeling too bright and went for a private health check at a private hospital. This included an expelled air test. Poor result. Did it again, still poor result. Doc’s verdict - a problem with the procedure, no worries since I didn’t smoke. It was 2 years later when I had pure blood arising in my throat - still the GP said no worries. I went back nearly immediately and saw a different doc who sent me post haste for an Xray. In no time the they were phoning me to go for an appointment at the hospital and lung cancer was confirmed.
I can only assume it is a relatively slow growing cancer since I am now nearly 6 years from diagnosis and surgery with just the one recurrence. I am not counting my chickens tho - last time I saw the onc he said I should be more concerned about the lung than the breast cancer. Great news!
At least my GP was on the ball about the breast cancer and referred me immediately - on the other hand the tumour was quite large since it had been missed on mammogram and I hesitated thinking you can’t really be so unlucky as to get another cancer - but, hey how wrong can you be? I always thought they were pretty good on breast cancer - I had been referred quite a few times before with cysts and a papilloma ( at least I think that is what the said)
Anyway that’s my story.
Sarcath
Just caught up with this thread, i read this article in the Observer too.
What gets me is GP’s get away with it too. I wonder how many women are not here now because of their incompetence.Unfortunately i was mis-diagnosed and left it a year then mis-diagnosed again but left it 10days and went back. I swear i wouldnt be here now if i had believed the GP. Its just not good enough.
R
Dear Liverbird
I’ve shown this article to some very good people over the last week - been to a cancer conference + put my comments in a discussion paper for NHS Scotland. I hope they notice - better still, take some action.
I was four years misdiagnosed because of GP incompetence. I put myself into the system once I reached 50. Had I listened to my GP on my third visit I doubt very much if I would have been alive - she told me to wait until the NHS mobile screening unit visited my village which would have been almost three years later. I’m still fighting the system but I know why people give up. The Ombudsman did not uphold my case. Neither did the GMC. It maybe the only way to go is legal. However, for many this is not affordable. Some GPs are getting away with it and knowing how difficult it is to break into the system I fear their mistakes go unnoticed. The system is stacked in their favour. They need never get found out. The article in the Observer was by the Government’s top cancer expert, Professor Mike Richards. Surely he will be listened to.
Take care.
Jeannie
There is a letter in today’s Observer from Professor Mike Richards distancing himself from the tone of the reporting.
He states that most GP’s get it right in the vast majority of cases and finds this kind of reporting unhelpful. His words not mine.
Trish
I read that letter too. He seemed mightly ticked off that his words had been misconstrued and that it could have started a panic. I do feel for GP’s. They are gatekeepers to the hospital system and have a responsibility not to over refer or else the whole system would grind to a halt. On the other hand, they do miss things with dire consequences for those involved. I suppose in an ideal world, there would be vast numbers of clinics just screening those who the doctors weren’t sure about. I am sure it will come about as medical care is a fast growing lucrative business and will make a few very very rich. I do have concerns about too much screening especially the overuse of xrays.
I too think i was misdiagnosed . I went for a routine Mammo and was recalled back to the breast care centre, was there for about 3hours going through umteen mammo’s, then finally saw a doctor who took an ultra scan as she thought there was something, was dismissed and told it was probably just tissue. When i went for my next one 3 yrs later, i was recalled back again the same breast, same area, went through all the usual mammo’s and was told i had a tumour. resulting in me having an aggressive grade 3 tumour and it had spread to lymph nodes. I remember when seeing the oncologist after my surgery to talk with him about my chemo etc and told him about my scare 3 yrs earlier and he told me it was not in my notes ???.
I often wonder if they missed something , but i do not know how to go about finding out. I would welcome peoples opinion on this.
Regard to all
Mary xxx
Dear Mary
It will be interesting to see what the others have to say on this one. Being four years misdiagnosed has made me cynical. But if you want my opinion - they most certainly should have had details of your previous mammogram etc in your notes but it may be that they conveniently wanted to hide what was in your notes in case you decided to take it further. I did say I was cynical!
PS: You can request a copy of your notes at any time. Only you will know if you want to delve into something that you may already have managed to put to bed. Be very careful.
Best regards.
Jeannie
Sorry, I didn’t get it right. Anyone able to help me out here and tell me how to send a private message. Many thanks.
Love
Jeannie
Hi Jeannie
To private message someone you need to type their username in the ‘Send a private message to’ box just above where you would post your comments. Make sure you type the username exactly as it appears (case sensitive etc) - type your message in the box as usual and hit ‘add you comments’ -then only you, and the person you are pm’ing and the moderator can see the comment
hope this helps
margaret
Hi All,
So sorry to hear all of your experiences, it must leave you feeling very bitter. My story is the other side of the coin, routine mammogram and then biopsy, went to see surgeon for results and was waiting hours and hours, it turned out results had come back negative but he had queried them with lab and insisted all samples taken were checked as he didn’t believe the negative result given the x rays he had seen - came back low and intermediate grade DCIS - I feel very lucky to have got a surgeon worth his salt!!!
So sorry to hear about your poor experiences with GPs. I must say, I have been extremely lucky. I moved from a completely different health authority and registered with a new surgery and when I found a lump when straight down to see them. I did have a history with breast problems, so this new GP obviously had some of my notes . Was referred immediately and seen in breast clinic within 1 week. They have a fast track clinic and all tests, needle biopsy etc. was done in the same day with results back immediately. Once they dx BC , I was then ‘in the system’, and all appointments at the hospital were efficient and very very quick indeed. I then moved again (same health authority this time) and registered with new GP and again when I had further problems was seen within 2 days at the breast clinic!! I did have to wait a little while for some tests (bone scan took 4 weeks), but everything esle was very quick and I had surgery within 6 weeks of first seeing the GP. SInce then my GP has been extremely helpful. I can see him about everything and if he thinks it is necessary, he will arrange blood tests, screening etc. without any delay.
Don’t know whether I am just very lucky , but the girls I have spoken to locally (at the hospital and support group) all have similar positive stories to tell. Perhaps it is not just the GP service but also the ‘post code lottery’ thing. I was also offered counselling at the GP surgery and have an open date with the nurse for blood test, so I don’t have to make the track back and fro to hospital every time.
The only downside, if there is such a thing, is that every little ‘niggle’ etc. is now acted upon. I now tend to leave anything minor unless it is getting worse, still bothering me several weeks later before making GP apointment. My GP’s attitude is that he rather things were followed up/tested etc. then left and possible causing future problems.
I know it does not help all of you who have had bad expriences, but just wanted to point out that it can go right sometimes.
Birgit