I live in Cyprus and had a mamogram and an ultra sound recommended by doctor. The specialist sent me away saying it was an infection and sent me back to doctor for a strong 2 week course of anti biotics. He patted me on the shoulder and said I would be alright it would clear!
A month later I knew something was not right, mamogram had had an ill effect on invasive cancer and I wa ssent to th island's top ongolist who as soon as he examined me, even before the biopsy said why wasn't this picked up before???? !!!!!
I have just sent you a PM so hopefully you can see what it's like to receive one!
i think you can pm by clicking on the persons name and then once at their profile click to message them, hope that helps
I've only sent a pm on the old site. Perhaps someone with much more computer knowledge will tell me how I go about it. I would also want to have a trial run as I will be sending you confidential information.
Look forward to hearing for someone who knows how to pm.
Thanks in advance.
I don't have a profile but please do private message me if you can (I don't know how - computer illiterate - or tell me what to do so you can pm me!) I would be very interested to hear your story. You say you've been in the process for 4 years which is about the same time as my misdiagnosis (about 4 and half years now - diagnosed correctly Nov 2007). I wonder if it was the same guy involved?
Good one. This could be getting interesting as my medical negligence lawyer is based in Edinburgh. I would need to send you a private message if you are interested to know anything about her.
Interestingly, I was at a Breast Cancer Debate lead by Rhona Branklin in Scottish Parliament yesterday. You weren't by any chance there?
Do you have a profile? Sorry, I'm not very computer literate and I fail to see profiles most of the time.
I can remember my GP saying on my first consultation that I had nothing to worry about and that BC was rare in women under age 50. I had no idea at the time that the figure was 1 in 200. I would hardly call that rare. I also didn't know at the time that an average GP practice will only see approximately one BC case per year - as quoted to me by Macmillan and Breast Cancer Care. I thought that with over 40,000 women getting BC per year they would see a lot of BC and be very knowledgeable on the subject. This is not the case. Mine have admitted they don't see a lot of BC - I was with a rural practice and they may not have seen any for many years. I wonder just how interested a GP practice is in investing in training when the figures are so low. I've asked the question about training but to date I've not managed to get a response except to say there are training days, workshops, seminars etc available. Apart from the in-house training days, my understanding is that it is not compulsory for GPs to attend. I question what right a GP has to refuse a concerned patient access to further investigation when they may not have seen a lot of BC and may not have taken any great interest in BC training. I myself feel I was more knowledgeable than my GP but my knowledge or awareness did not get me into the system. Better education and training would be a way to go.
i think in terms of education the public in general and GPs dont actually know how common BC is..... they say under age 50 BC is really rare but at age 40 its around 1 in 200 and at age 30 its around 1 in 2000... well i think thats pretty common.... if you compare it to other things that women worry about and get screened for earlier like cervical cancer which only affects about 9 in every 100,000 women.
surely more should be done educate people that BC is not uncommon and that there should be a defined pathway for women with any form of lump bump etc to get investigated at hospital rather than being fobbed off by a gp or not been given the proper results.
its quite scary how many people seem to be misdiagnosed... i know i was examined twice within 4 weeks by the specialist who said i was fine. and even after my recall the radiographer wanted to repeat the mammo but of the wrong breast!! i obviously pointed out she was wrong.
anyway im sorry i dont have any words of wisdom but i hope you can get some resolution.
Hi, i am from wirral, near Liverpool. At my last chemo appt i heard of another lady that was misdiagnosed by the same consultant. Its frightening just how many are. Certainly before i was misdiagnosed i had no idea just how common it is.
There are some very interesting comments on this thread. I have been travelling the medical negligence route for over 4 years and am well aware of some of the pitfalls. I wasn't aware that "no win no fee" existed for medical negligence until perhaps the case reached "causation" level. Some solicitors would consider it at "causation" level because by the time you reach this level there is a good chance you would win your case. Prior to getting to that level you have to have an independent GP expert report, an independent oncologist report + pay for medical records etc. Who would be paying of this? I doubt very much if a solicitor offering a "no win no fee" service would be prepared to pay out for these reports. Although I am interested to hear otherwise.
I was also told about the legal cover on my house insurance. It is worth checking. However, my policy is with DAS and they have been very difficult. They say in the policy that they cover medical negligence but I have failed to get anywhere with it. They are now saying they do not cover cancer. I put this in the hands of my solicitor but so far to no avail. I'm not sure how much time and money I want my solicitor to spend on this. My advice here would be check it out but don't get too hopeful.
The "Action call over diagnosis errors" article may interest some of you. http://news.bbc.co.uk/1/hi/scotland/8264049.stm
Perhaps Breast Cancer Care could have a category for MISDIAGNOSIS. With no effective mechanism in place in the NHS we are very much kept in the dark.
It appauls me that so many of you are having to travel this journey.
Purely out of interest, are any others from Scotland.
Hi, thanks for that,
the solicitor i am using is a friend of my partners family, and so i am told he is very trusted. So fingers crossed.
I do wish that more could be done though to bring out in the open just how many ladies (and young ladies at that) are being misdiagnosed. I was told at the time it happened only very rarely, i think anyone reading these forums can clearly see that it is not quite so rarely.
No win/no fee DOES have a cost if you lose - disbursements, which can be up to 10 or 15 thousand depending on your case.
Sometimes even car insurance, house contents, credit card insurance MIGHT have a little clause covering you but unlikely.
HOWEVER, it is a FACT that 97% of NHS cases are settled out of court, very rarely do they go to court because it is usually very obvious that someone has been negligent and that a causal link is established and therefore the NHS legal beagles just will not take it to court - what would be the point?
If you opt for no win/no fee you can go quite far in getting advice etc. before you risk spending anything and if you have a good person then they will tell you at what point you risk incurring charges.
My advice would be to follow the NHS complaints process first and see where that goes. If no satisfactory answer then go to the PHSO and if you have a case then ring the Law Society to recommend a lawyer or find someone who will be some pro bono work perhaps.
Do not give up ... or they will keep failing people!
My sis-in-law is a personl injury/medical negilgance solicitor in devon (newton abbott) and I also have contacted her re my suspicious lump seen on chest xray in 09/2007 and large lymph nodes in my armpit also in 09/2007 which were not investigated as they were looking for lung Ca not BC. Had i not been so relieved to be told it wasn't lung ca i mite have had more sense and demanded they investigate the shadow over my left breast and and the lymph nodes in my arm pits. she cannot represent me as she is my close relative but has advised i get hold of my notes and scans for an indepent medical expert to review.
To be fair I'm not sure if I persue if it will make any difference, but i do know what you mean by a lack of trust. I did not trust my chest consultant after that( i have a chronic lung condition that was dx after 09/07) so i have changed consultant to one i love and find so fab! hence trust restored.
Remember not all medics are hopeless and infact most are fab and deal with 100 of ladies and gents very very competently every day.
Anyway - my sis - in - law suggests you check your home insurance it often has a med neg/solicitors policy that covers the first few thousand, also if your are members of a trade union they may also cover you for solicitors fees for the first few thousand. So grab your insurance policies and fone your trade union reps.
Also when looking for solicitor ask plenty of questions about their expertese, make sure they have expereince in med neg and watch out carefully for the no win no fee malarky there are often hidedn costs.
Goodluck my Bc chums xxxx Rachel xxxxx
Thanks so much for your replies to my post. I am sorry to hear all of your struggles too.
Anna, I have been thinking also about 'no win no fee' but I have read that there are hidden costs if you lose (there are also up front costs at the beginning for reports etc) that could rise to tens of thousands of pounds from so-called 'disbursements' (or something like that...) Have you been reassured that your 'no win no fee' really means you will absolutely have to pay nothing if you lose? Because I also read that to protect them if you do lose, lawyers need to take out after the event insurance the premiums of which you have to pay yourself and can be up to £10 000. I would really be grateful for you advice seeing as you are much further down the road than I am. I am broke so can't afford to pay anything up front except a few hundred pounds.
I agree wholeheartedly about misdiagnosis being the thing that lingers more than the actual fact of losing one's breast. It certainly matches and exacerbates the fear of it coming back in the other breast because one CANNOT TRUST DOCTORS ANYMORE. I feel I have to rely on myself now to make I keep alive. And that is such a responsibility. And I already feel the responsibility of having to do the dreaded monthly breast checks....what if I miss something?
To the lady who had calcifications and then found an invasive lump. It is possible that the lump did not come from the calcifications - my consultant says that a lump can come up any time without calcifications which are or can be (1 out of 3 are)a sign of DCIS and may or may not turn into invasive cancer (the higher the grade as in my case the more likely it is, hence WLE or mastectomy). I don't know it is all very confusing.
My case is very clear cut. I should have been called back for a mammogram (I was pregnant when I went to the breast clinic) but I didn't know that. I was obviously - seeing I was just about to give birth - just relieved that it was 'nothing'. The guy who told me it was nothing was obviouly a student doctor - or registrar - on reflection. My ignorance and desperation to believe I could concentrate on having my baby, cost me my breast. But it was only chance that I discovered I was still having the same symptom and then my GP really was negligent telling me just to ignore it.... And it was only pure luck that after TWO AND HALF YEARS my grade 3 multifocal DCIS hadn't spread (I hope).
i think you are doing the right thing by getting it thoroughly investigated. When i was misdiagnosed with a fibroadenoma it didnt feel right to leave it to grow inside me but thought they know best and i was made to feel that i was fussing over nothing. I remember saying to my partner i just hope they havent misdiagnosed it. I wish i had insisted on a mammogram or ultrasound and i wish i had of insisted on the lump being removed. Hindsight is a great thing. Unfortunately like many other women i didnt insist. Nowadays though i do make a fuss, and i do ask questions, they have to earn my trust if they want me to stop fussing.
I believe there are different types of microcalcifications ,not sure how the Drs tell the difference though.
I am 52 had my first NHS mammo in Aug 2007 - was recalled to Kings College London for more detailed mammo Sept 2007 - I was so scared - thought I had BC then.
I was told that several doctors looked at my scan and ther was micro-calcifications which were normal for me, and they would keep an eye on it in 3 years at next mammo. They gave me a leaflet and ticked a box Micro... the box said that they are benign changes in breast etc and the last line did mention in passing thatthey can be a pre-cancerous.
In June 2009 I found a lump in upper right quadrant of right breast. At the triple clinic it was seen clearly as a 2.6cm mass - core biopsy done and was told that day HIGHLY probable BC - confirmed two days later.
Turned out on surgery that tumour had 'legs' and was 5cm. I also had 3 nodes involved. Grade 2 IDC with some insitu in margin.
How can that size of tumour (slowish growing?) and node involvement not be seen less than 2 years before. I should have had mx but my surgeon managed with a WLE as size of boobs were big enough to take the dent.
have not decided what to do about this next - my surgeon has been really good - he is an honorary consultant to the screening team at Kings and I was not mis-dx by GP or in the local breast clinic but it still upsets that my tumour was not supposed to be aggressive but was not linked to these micr-calcifications! Some other women over 50 are having mx because of in-situ areas that may not have developed to invasive but who would want to wait and see?
I also struggle to trust them. I doubt if I will ever trust a GP again. When I was at the hospital last week I told them I didn't have the results of my mammogram which was taken over 5 weeks ago. The doctor then looked on his computer and said the results are here "you have a 10mm cyst in your other breast". I nearly fell off my chair - why had I not been told about this. A breast care nurse arrived on the scene. She said it is not normal practice to recall a cyst. I created a fuss and have an appointment with my surgeon on Monday 5 Oct. It may well turn out to be nothing to worry about but I want to have it fully investigated. Had I not asked I was about to be sent a letter saying everything was OK. I really need to wait until I see what my surgeon has to say about this but I will report back. I know of two young ladies who were told they had a cyst and went on to have breast cancer. Jane Tomlinson was also told her BC was a cyst. You really do have to look out for yourself.
Keep you posted.
My cousin successfully sued her health authority[she was treated in Northallerton]for mis diagnosis of her breast cancer.She was told after a mammogram and fna that she was fine.3 years later when her cancer had been dx and had spread she read her hospital notes and found after that first mammo/fna a record which said something like.'high probability of breast carcinoma'as 3 years had gone by her cancer was very big and she did eventually die of brain mets.I went with her to see her solicitor who said it was very difficult to sue but as her case had documented evidence she had a chance.She won and received a largish sum[dont know how much].She was also told that had she not already had spread the award wouuld have been much much less.
i wish i had seen that programme. There are so many people out there that are misdiagnosed. My solicitor has already got my medical records and is working on a no win no fee basis. I am leaving it in his hands to deal with, (hes a friend of my partner) for me my main concern is trying to fight the cancer, and i think my main problem at the moment is that i struggle to trust that they know what they are doing, as they couldnt even get the diagnosis right in the beginning. I will say though that my chemo consultant seems to be a good man and i believe him when he says he will try his best.
It's over four years since I was misdiagnosed and most of the time I think about it more than the cancer. As a good living honest person, my head finds it difficult to get round the denial. If anyone is thinking about taking matters further I suggest the first thing they ask for is a copy of their medical records from both the hospital and the GP. There would be no point in taking matters further without concrete written evidence. In my own particular case, the first GP I went to see did not even put a note of my concern or even mention I had been to see her in my medical records. My second and third consultation does not mention I asked for a mammogram (my way of asking for further investigation)to which she is denying I asked. I know very well I did but I do not have this evidence on paper.
BBC Scotland had a programme about misdiagnois last Monday. It was very interesting. They are saying "medics could be getting it wrong in as many as 15% of patient consultations in hospital and primary care." I go on: "there is currently no effective mechanism in place in the NHS to record these incidents, and there is no obligation on doctors to report them." Well that just about says it all......
I remember when i was having my biopsy, being told that misdiagnosis was rare, what an absolute lie. I think anyone that takes the time to read any of these forums can clearly see that there are an awful lot of ladies being misdiagnosed. And an awful lot of younger ladies too. I think its a disgrace that younger ladies are not being taken seriously when they present with concerns. I have 2 children that i would like to see grow up. And certainly the misdiagnosis has made a difference for me, it has meant me having to live every day with this thing still inside me, every day worrying if the chemo is going to work or if the tumour is getting bigger, if its spreading further than the lymph node it is thought to have already spread to. Its the difference between having my lump removed and having my whole breast removed. If the trust i am suing want a debate on timescale and how this has affected me i could keep going all day, so the best of luck to them. Sorry everyone, it makes me so angry
Jeannie is right, women under 50 beware.
I had a delayed diagnosis. I was refused screening despite having a family history. I am having this investigated and if I don't get the "correct" answers I'll be taking it to the Ombudsman for starters.
Too many women are fobbed off.
Meantime the NHS screening programe is carpet bombing women over 50 and turning a lot of them into amputees unnecessarily hastily.
I was misdiagnosed for six months and so I was convinced I should sue but I couldn't prove the outcome would have been any different if I'd had earlier treatment. In my case I didn't have a mastectomy either as my DCIS was focal and around the tumour I had (invasive). I'd been told I had sclerosing adenosis, a benign tumour. I had ultra sound guided core biopsies, a mammogram and a clinical exam - the triple test and it still failed to detect the cancer
I found out that in order to get any compensation, you have to be able to prove that your life expectancy has been reduced by the misdiagnosis. In the case of DCIS despite the fact I got diagnosed later, the prognosis is still very good. The idea that cancer has to be detected early for it to be curable isn't based on my idea of early detection. The books I've read suggest cancer takes around ten years before it is detectable, so it is never detected early as I would understand it.
The term "early" in medical terms is before the cancer cells have become invasive and before any cells have spread to the lymph nodes or elsewhere in the body. In some people this can take a long time, particularly if you have low grade cancer as I did.
I had a similar experience - blood from nipple and a tiny lump. My GP was great and referred me but consultant made me feel silly for worrying (I was 34) and wasting their time.
I was convinced i was ill and was referred to a counsellor to help me deal with depression and my inability to let go of the fear that i was ill.
finally - the Third time i went back the lump was 8 cm - i went back annoyed that because it wasnt cancer that didnt mean they could ignore me -they werent dealing with the fact that it was extremely painful, made me look disfigured and was awful dealing with the discharge damaging bras etc (great i thought - its big enough for them to remove).
It was DCIS cancer and i was told that 8cms is a tough sized tumor to deal with and perhaps i had a year (I had let it grow thinking thats what needed to happen! imagine...). 4 yrs later i am still here and cancer free (but also breast free!).
I considered taking the doctor to court - primarily because i wanted them to recognise that they ignored me and treat me like an idiot. They need to listen to women.
I didnt sue in the end as they claimed that the lump must have suddenly turned cancerous and i wouldnt be able to prove otherwise. They had ticked the necessary boxes according to them. I decided that i would confront the consultant (he didnt want to see me because i had some treatment privately with a local surgeon with a better reputation than him (a nurse whispered that because of me he was beginning to send patients for more tests rather than just sending them home)
good luck with whatever you decide to do - we all have different ways of dealing with this and trying to make a difference - keep us informed in case we can help x
I couldn't agree with you more. Women under 50 are getting a raw deal. I failed to get into the system three times over a four year period being told I had nothing to worry about (despite having swelling, thickening and two lumps under my right armpit)and as I was under age 50 I wasn't eligible for a mammogram. I finally put myself into the system and was diagnosed with breast cancer + 15 affected lymph nodes. It was as if it couldn't possibily be breast cancer as I didn't tick all the boxes and I was under age 50. All women under 50, BEWARE!
Interesting topic. It crops up a lot more than anyone would care to think. I am actively taking my four year misdiagnosis to law having tried the complaints route, the Scottish Public Services Ombudsman and the General Medical Council. Whilst this route is free, for me it was a complete waste of time and effort. It appears the services didn't even listen to my side of the evidence. In fact it may have hampered my legal case and has certainly added approx two years to my efforts. I've got over the first hurdle successfully on the legal route (an independent GP expert has said I have medical negligence)and I am continuing with the fight. I would not wish any other BC person to experience what I have had to go through. It's a costly business and most would be put off by the effort, stress and cost. I've written quite a lot about how to go about it in the past - not sure how to locate the details on this system but ladies who are more computer literate than me will know what to do. I also know another lady (breast cancer misdiagnosis) who went on and won her case. She used to use this site regularly.
I hope anyone who has not had good care lodges a complaint. Without complaining there is no evidence. Changes need to be "evidence based" - I urge all who are not happy to lodge a complaint.
I have also since found out (at my last chemo session) that another lady, also in her 30s was misdiagnosed by the same consultant. I was also told that this consultant is now off long term and did wonder if there was a connection. I do appreciate though that this is hearsay. I think an important factor with me was that because i was 34 at the time, cancer was totally disregarded and i think the professionals involved need to pay attention to the fact that younger ladies are getting breast cancer, with or without a family history of it.
I think it's a good idea to take matters further if, and only if, you feel up to it.
You've had an inexcusably bad time and, as I think someone else has already pointed out, it will gnaw at you if you don't act in some way to redress the emotional balance.
And you may well do the women that come after you the most tremendous favour.
I have found in the past, that a letter, merely mentioning the words 'solicitor' and 'legal action' sometimes been enough to get someone to take notice (and all for the price of a stamp), altho' to be fair, I've never taken on a health authority.
Wishing you all the best,
X to all
Im kinda in the same boat too.
My lump started in pregnancy and when i was 36 wks i went to to GP about it. I was told it was hormonal and to return in 3mths if still there. 3mths later it had doubled- went back, told it was hormonal again. Returned another 3mths later when it was roughly 7x7cm now and was finally referred.
Cons at the hospital told me 99% is was a fibroadenoma but it wasnt. It was 2.0mm grade 3 bc.... I felt sick as i had been carrying this cancer around for almost a yr by this stage and felt it would have spread everywhere.
I am so lucky my lymph nodes are clear.
In terms of complaining or suing i doubt i would get anything other than an apology.
I have just started to sue the health authority that misdiagnosed my breast lump. I was referred to the breast clinic back in december and a fibroadenoma was diagnosed. At the time, i was examined and a fine needle biopsy (not ultrasound guided) was performed. The examination was quick and i had no mammogram or ultrasound. There is no history of breast cancer in my family, although my mum has non hogkinsons lymphoma and my father died of a brain tumour at 42. I was told it was a benign tumour and wasnt even precancerous. I went away very pleased and relieved. A few months later the lump continued to grow, so i went back again. This time i was told that it was a grade 3 cancer. I am very angry about this and feel that i am now going through hell because of this misdiagnosis. Not only the physical side of things like the sickness with the chemo and the loss of hair etc but financially the worry of being able to cope when my pay goes to half pay. I also worry how my partner and children will cope if something happens to me. The main thing that makes me angry was the consultants attitude when i went back the 2nd time, he tried to blame me for not going back earlier, then the pathologist for maybe taking the sample from the wrong area. I would have had so much more respect if he had held his hand up and said sorry. It has left me not trusting the medics at all, not a nice feeling at all, although i will say that my chemotherapy is a lovely man and i believe him when he says he will try his best.
sorry about the waffle
There is a section on the NHS website that shows you the process of complaining and how to go about it. This is the link http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx
I would start with this and personally, I would avoid those no win no fee solicitors like the plague. They are in it for themselves and will do anything to get money. I guess it depends whether you want justice in terms of ensuring that the doctors/system that let you down are reprimanded and retrained or whether you want financial recompense for your misdiagnosis.
How awful you must be feeling after all you have been through. I dont know about taking on the health authority but as I said on the other thread you would get lots of info and advice from the PALs at the hospital. You could also try a local law centre if you have one in your area - they are usually funded by the council and dont cost you much. I think then if they can prove you have a case you can then decide what to do.
It does sound horrendous and I hope that your getting all the help in order to deal with this. I take it your child is still very young so I would suggest you sit and think about YOU for a change in that making sure your energy levels are good and that you can relax as much as you need. You are going to need to be focussed, energised and extremely calm.
I wish you all the very best and please wait to see what replies you get as there may be someone with some experience of this.
Good luck x
I wonder if anyone has any experience of sueing their health authority for misdiagnosis? And if so, how did they go about it? I've seen these adverts online like 'youclaim' - basically 'no win no fee' outfits but are they trustworthy?
I was misdiagnosed with DCIS having been sent immediately to the local breast cancer centre and told I was fine. It was only by chance that I noticed the symptom I had (bleeding from the nipple) was still there 2 and a half years later and I could so easily have missed it (the bleeding was only obvious when expressing milk - I was breastfeeding). My GP told me not to bother pursuing it, after I told her that I still had bleeding, but I went to someone else in the surgery anyway who referred me back to the breast unit. I was very soon diagnosed with DCIS and had mastectomy and an incredibly stressful time wondering if, after such a long time, my lymph nodes would be affected. Luckily, there was no spread but I do feel it has all been down to luck and not the doctors...It has left me feeling angry and also anxious. I find it hard to trust any doctor now! If anyone has any advice for me I would be immensely grateful.
Thanks in advance.