In October I transferred my care from my local hospital to the Marsden because of several concerns that I had that left me wondering if I was getting the right treatment. The Marsden used the pathology info they had from my local hospital which stated that I’m HER2 positive and started me on Herceptin treatment. Everything seemed to be going well.
I was due to have my 4th Herceptin treatment today but had a clinic appointment first. As anticipated, the Marsden had reviewed my pathology and to my complete and utter amazement told me that I’m not HER2 positive. They tested my original biopsy and mastectomy samples twice to make sure … I came out negative. They made the point that they are very experienced and are confident of their findings.
Obviously it’s great that I don’t have to have any further treatment other than Tamoxifen and then Arimodex for the next 5 years. It’s also great that my prognosis is apparently much better than I’d been led to believe. Things look fairly good for me.
But … but … this just feels so weird and confusing. I’ve had treatment I shouldn’t have had and I feel utterly bewildered by all of this.
More importantly, how can my local hospital have made such an error? If I’ve been assessed incorrectly, how many others have? This could easily have gone the other way couldn’t it ie. someone not getting the treatment they need because the pathology is wrong?
Furthermore, had I stayed with my local hospital I would have been participating in the Persephone Trial to determine whether or not Herceptin is as effective after 6 months as it is a year. I would have been on a trial yet HER2 negative without anyone realising … what value then are trials when things can be so wrong??
Is this a common thing? Has anyone else had an incorrect diagnosis like this?
What an awful shock for you. I have not heard of this happening before though I know sometimes there may be ‘borderline’ pathology results.
I think in your position I would want to ensure that a similar mistake didn’t happen to anyone else, so I would consider a formal complaint or at least writing to get an explanation.
I have never regretted pursuing a complaint about misdiagnosis (told I had cysts when I had cancer), but at times complaining can be stressful.
I had an incorrect diagnosis, although not in this country, and not as serious as yours as no treatment was involved. I was initially diagnosed with lobular cancer whilst living abroad, and was told that I was triple negative. I came back to the UK for treatment, and the first stage of that treatment was a sentinal node biopsy. My surgeon had been surprised and worried by the triple negative result, so repeated the tests - and although I am HER2 negative, I am actually strongly ER and PR positive.
I have no idea how often mistakes happen, but I have complete faith in the team treating my here. As my misdiagnosis happened so early and was corrected quickly (and because I was still in the early stages of understanding what all these things meant), I don’t dwell on it, and had almost forgotten about it until I saw this thread, but the situation is obviously more serious in your case.
I’m glad the true diagnosis is so much better for you, and wish you all the best,
Jane, thanks for your comments and it really has come as a shock. Yes, I think it’s time for me to make a complaint. There have been several issues that warrant complaint throughout my treatment which is why I moved to the Marsden, but this is the most serious. I shudder at the process because of the time and stress involved, but I have to follow this one through I think.
As for you - cysts when you had cancer? That’s appalling!
Julie, thanks. I’m pleased for you that the misdiagnosis you had was corrected so early in order that you could move on. It just baffles me how such mistakes can be made.
Jane, if you’re reading this, can I pick your brains?
It’s taken me a couple of days to begin to get my head around issues and I need to start on the complaint process. Although I’m pretty articulate I haven’t got a clue as to where to begin. I’m going to need support through this process - do you, or does anyone else reading this, have knowledge of PALS (who are not independent) or ICAS (Independent Complaints Advocacy Service)? Are ICAS really independent … I’m just a bit sceptical.
I anticipate a long process - how long should I be expecting? A year? Longer?
In theory ICAS are truly independent and the contract is awarded through a tendering process. It isn’t always a local or a user-led service that gets the contract, but they could be worth a try.
You may also find that there is an independent local advocacy service who could support you with this - either a general one, one aimed at users of health services or one for people with physical disabilities and long-term illnesses. You might be able to find one in your area by looking at Action for Advocacy’s website as they list many of the advocacy services throughout the country.
Hope this helps and hopefully Jane will have some ideas.
I have heard good things about PALs and they should at least be able to set out the strategies you can use to complain.
I don’t know anything about ICAS.
in my case where I wanted to try to get proof of negligence I did this:
went through local complaints procedure (did this on my own as I felt confdent enuf to do so)
got a good medical claims soilcitor who found me an independent oncologist who told me I had a case for negligence but not for causation (that meant I would not get civil financial compensation…I accepted this)
I then pursued my complaint through the Healthcare Commission (you get there if dissatisfied with local procedure) and the General Medical Council. The doctor I was complaining about had other cases against him too.
I ended up with an apology from the Trust and a proven case against the doctor at the GMC but the doctor was not dismissed…just had sanctions put on his practice for 2 years. you can google information about the case or look at the GMC website, The doctor was Dr Lan and he practiced at the Pricess Alexandra Trust in Essex. The GMC case was in September 2007 (the negligence was in March 2003…I was diagnosed on Oct. 2003.)
So all this took 4 years by which time I had recurrence. I learmned to manage my emotions about the whole business. I pursued my case in the hope that systems and procedures would improve to stop what happened to me happening to anyone else.
I think you have to decide what you want from complianing? And what is the best way of achieving this? Start with PALS, but if you are reasonably confident and arttculate you can just get a copy of the Trust’s complaints procedure and do it yourself.
I really think it is important for you to pursue this because a mistaken her2 test has serious consequences…and it may be that procedures for testing are not being followed correctly at your local Hospital. (in my case awful things came out about the whole management of the screening system including the mainteenance of technical equipment.)
Hi Gillian,
I think it is important to follow this up - if you have the energy to do it. Hopefully it will reduce the chances of similar errors happening in the future. Frome a purely selfish point of view i think you were originally being treated by the same hospital as me on the South Coast? I’ve been happy with the treatment I’ve had so far but ‘incidents’ like this are really unnerving.
cheers
caroline
Eliza, thanks so much for that and the info about Action for Advocacy … I really appreciate it!
Jane, oh my goodness. I googled and am shocked at what happened to you. Knowing how I feel right now with a more positive outcome, I can’t even begin to imagine how you must have felt both at the time of discovering your misdiagnosis and subsequently given your probable outcome. I feel for you so much! I’m angry on your behalf!!
Thanks for the info which I’m taking time to absorb. I think your advice to me is spot on and it’s very helpful to take account of your experiences. I have every intention of going through the complaints process given the seriousness of this My head is just leaping around at the moment as I take everything in.
So what do I want from this? Justice! Does that make sense? I want this hospital to never, ever again make such an error. I want them to deliver services so that people receiving them can have confidence. There are many things that went wrong throughout the time I was with the hospital and I don’t want others to have the same experience as me. I haven’t drawn up a list of errors yet but will do … there are quite a few!
So do I want compensation and can I prove medical negligence? I don’t know what I can or can’t do, but if a negligence claim makes a difference then I’m willing to go down that route. I doubt very much I would be able to make a personal claim but I want to chase this NHS Trust to the point that genuine changes are made.
I’m absolutely certain I will be asking questions as I move forward with this. Jane, I so appreciate your comments - a huge thank you!
Caroline, yes, I recall us discussing this hospital in the past. I know what it feels like to become unnerved - I remember saying how unnerved I was in an earlier discussion a few months ago. Caroline, I’m really pleased you’ve been happy with your treatment so far, and long may that remain. Believe me, I will be pursuing this and will find the energy to do so. Heck! How could I possibly not! It’s good to talk to a local person - I daresay we’ve shared some experiences of the staff at the hospital. Do feel free to PM should you wish to do so.
And so my brain ticks on and on …. I will be returning to this over and over as I move my way forwards through the complaints process.
Wow I had no idea it was happening to others too and I haven’t googled it yet but I’d be furious in your case Jane. I’m reptty angry in my own which is nothing in comparison but I was originally told that I had 2 triple neg tumours, but for some reason (not yet explained) they decided to retest the tumours and one turned out to be weakly hormone positive (3/8 er and 2/8 pr). I was also given rads because of muscular invasion which was news to me at the time. I had to wait 12 weeks to see the onc and even then it wasn’t the person in charge of my treatment but the onc I did see didn’t offer me a written report and when I did finally get one i said I should have come off the pill. I asked about that at the time and was told to stay on it because of risk of pregnancy (really does anyone actually have a sex life while on Chemo and aren’t barrier methods acceptable).
So 3 screw ups in my case.
It’s not inspiring is it.
I’m horrified at the amount the NHS has to pay out in compensation to people and despise the culture of litigation that’s developing so am considering what steps to take… some form of review of the system has got to be done in my opinion.
I’m really sorry to hear I’m not alone on this… actually sorry doesn’t cut it… furious.
Forgot to explain re the rads. The surgeons got the clearances when they did the mastectomy but the onc couldn’t read the hand writting so I think he just chose the rads anyway as a just in case. My Consultant surgeon was angry about this because he said that the surgical team categorically would have called me back if any had tumorous material had remained and that the oncs unit should have damn well known this… the onc I’m referring to is the head of the dept too.
Grrrrr.
You should all know that you have a right to a copy of your records and I would get them if you’re in any doubt. I will be but first there’s a gang of very informed geeks I’m seeing tomorrow, some of whom have worked on the adjuvant databases and know the registrars etc. I want to know what they think about this.
I feel some freedom of information requests coming on through whatdotheyknow dot com (which is run by this team of geeks BTW).
I just thought I’d add my experience. I was told on 29th April last year that I had a fibroadenoma, which is harmless, but the bcn rang me on 30th and asked me to go back in. I did and was told that there had been a mistake and I in fact had a 3.7cm grade 3 cancer which had spread to my lymph nodes. In my case it made absolutley no difference to treatment, but there was a full investigation and as a result there have been changes in how my local path lab works so hopefully this will not happen to anyone else. (Someone else was told she had cancer when she didn’t, but hey she only ‘had cancer’ for 24hrs). My point is that it is worth pursuing the matter as changes can result from the inquiry.
I was also misdiagnosed in May 2007, I had a fibreanoma (sp) in my right breast removed and they did a mammogram on my left breast at the same time, I was told I had 3 cysts in that breast and that they were harmless.
I kept going back to my GP over the next year as I knew the ‘cysts’ were getting bigger. The GP of course went by the ‘negative’ mammogram report and told me I was over sensitive and it was fine.
In july this year I demanded to be looked at, cut a long story short, I was diagnosed with multifocal invasive ductal BC with guess what? 3 tumours!!! 8cm, 2cm, and 2cm, went on to have radical mx with 11 nodes pos.
I have complained to everyone I can think of at the hospital, but isnt it very odd? there are NO records of me ever having had a mammogram on my left breast! When I tried to look into it further with my BCN, she said that sometimes, mammograms and ultrasounds are done but the radiologist ‘forgets’ to put her notes in my file! She is not denying what I am telling her, but she is telling me that there is actually no proof that I ever had a mammogram on the affected breast! So really I havent a leg to stand on, My mum was with me at that earlier mammogram and could witness what I was told but according to them, that doesnt mean a thing.Oddly. my GP doesnt seem to have any records of that earlier ‘harmless’ mammogram result amymore either.
Anyway, right now it doesnt change anything, but it certainly would have made my prognosis a hell of a lot more promising if they’d biopsied those ‘cysts’ 18 months ago.
I dont think PALS or ICAS could actually get any further with it if there is nothing whatsover to show that I ever had that first mammogram, its my word against the whole of the medical profession.
I have since heard that mis-diagnosis is very common at my hospital
The fact that they have no record of your mammogram is very worrying and needs investigating.All diagnostic investigations should be recorded on computer and any radiographical test must by law have the dose recorded.These records must be kept for many years.This really needs a complaint at the highest possible level.There should be films in a film packet (although it may be a digital image on computer) and a record on the X-ray computer system and possibly an entry in a “Day book” Also whoever referred you should have made a note that a mammogram was requested.
Is there a chance that your name has been mis-spelled,date of birth wrong or you haven’t got married recently?
We once turned our dept upside down looking for a patients records/x-rays and were completely baffled until she phoned again and admitted she had got married 3 days earlier so her name had changed…the films were found!
Good luck!
Dot
x
I was diagnosed with a fibroadenoma in 2006; all my test were clear and it was when I went back the week after having it removed as a day patient that the Consultant told me they had found cancer. He had an investigation done at the path lab to find out if anything had gone wrong. The fibroid was 46mm and the tumour was 33mm, sitting under the middle of the fibroid which was why it wasn’t detected. I contacted a relative of mines who heads up one of the cancer centres in the UK and he told me this does sometimes happen, the cancer doesn’t get detected because it’s hidden away. I was just relieved I had asked to have the fibroid removed, but my Consultant said if I hadn’t he would have steered me down this route on account of the size. I presented with the lump myself and was referred within a couple of weeks, so I’m glad I wasn’t stupid enough to ignore it. A friend’s sister did this for 3 years and by the time she told her Dr it was too late and she died within a few months.
It staggers me to read all the different stories here and thanks for the comments everyone. Stillstanding, the lack of evidence regards your mammograms is very concerning. I’m shocked that your mammograms aren’t there.
I’ve decided to contact PALS as part of my initial complaint which I’m starting to put together and will see how far things go. I have a demanding job, so don’t have lots of time on my hands, but nonetheless, will make this as much of a priority that I can. I’m so angry at my local hospital!!