Coming to terms with inaccurate smear test.

Hi Ladies, 

As some of you may know, when someone has been diagnosed with cervical cancer, National Protocol says that an audit has to be carried out of all their previous smears (you'll find that all the smears you've ever had are kept, in case they need to be referred to later on). Well, my consultant recently informed me that when they looked at the smear I had in 2009 (so, that's the one I had three years before I had the one that eventually led to a cancer diagnosis), they found that CGIN had been picked up, but for some reason the result was inaccurately reported as normal. 

Now, knowing how slow growing cervical cancer tends to be, I'd already worked out that the 2009 smear test had been wrong. However, what I'd assumed was that the smear hadn't picked up the abnormality - the fact of the matter is, the test isn't perfect and as it's specifically designed to pick up CIN rather than CGIN, I had put that down to being one of those things - but the fact that actually the test HAD done its job, and HAD picked up the abnormality but some idiot in admin just wrote it down wrong, is actually pretty hard to come to terms with. My consultant plainly said to me that if it had been reported correctly, he would have had me in for a colposcopy, performed a LLETZ, put me on 6-monthly smears and in all likelihood, that would have been that. In short, I would never have got cancer. 

In the same way that I don't think the worry about recurrance will ever completely go, I don't think this is information that I can ever fully come to terms with. 

Annabel. x

Hi Annabel

So sorry to hear this news and how it subsequently affects your thoughts and wellbeing. I had similar doubts about my 2009 smear being unreliable , I think i was looking for a reason for me having cc  after having regular smears. I was assured this was very unlikely to  be wrong. I have never had confirmation in writing it was checked just a phone call from local hospital. I will always be unsure it wasn't missed :((

I wish you all the best ((hugs)) and Thankyou for all your info on here. Your knowledge is amazing :))

Kath xx


Thanks Kath, I really appreciate that. 

It's difficult isn't it - once you've had cancer, you realise how uncertain so much of the information around it is, and how much they still don't know - it really challenges any concrete ideas you have about how things are. I think it was the feeling of incompetence around this that really made me cross and I just felt like I'd kept my side of the arrangement - I'd gone for my smear tests regularly; I'd kept my side of the bargain - it's hard to know you've been let down when you're constantly being told that if you go for your smears regularly everything will be ok. Like you, I'd never even had an abnormal smear before and had always attended my smears on time, so that when I found out I had cancer, I'm not sure if it was me or my consultant who was the most shocked! He did say to me that as a result of this error they have gone back and looked at the systems to try and reduce the possibility of it happening again, so that's a good thing, but frankly that doesn't help me and it simply should not have happened in the first place. 

Anyway, I am ok-ish apart from that - good days and bad days - finally getting some energy back, which is nice, and am hoping to get back to regular exercise soon. I hope you're doing ok at the moment Kath. Thanks again for your kind words. 

Much love, Annabel. xxx

Hi there Annabel,

Gosh that mush be hard news to take in, you’re very right to be cross with it. I do often wonder about my previous smears (esp with awkwardly tilted cervix). I’m not sure I’m quite ready to ask about previous ones yet, or if I’ll ever be ready.

Glad to hear you have some more energy. I hope the sunshine is helping, it certainly is for me. I’m even going swimming tonight for the first time!

Thanks for all your help on this forum, you’re a great source of knowledge as Kath says.

Love Jo xx

Hi Annabel,

I am so sorry to read this. I am not surprised you are angry, although I am quite surprised that your consultant told you this. I don't mean that I would expect them to cover up a blunder, just that anyone could see that this would be distressing.

Still, "knowing" you, I am sure you would rather know the truth. I do hope they will review their procedures after this - this is surely a 'never event'.

While it sounds like your treatment was delayed unecessarily, the whole business of describing CC as a preventable disease is a mixed blessing I think. Those of us who were late with smears can feel like we are to blame for our disease while others whose condition wasn't picked up through regular tests can feel very let down, even though, as you say, it isn't a 100% reliable test, particularly with respect to CGIN. As if things weren't hard enough to deal with already.

Like everyone else, I feel for you and sympathise with your anger. If a formal apology or assurance of a change of practice would help you move forward, then I hope you can secure that from your local trust. Either way, we're here and happy to soak up your fury if you need to vent.

Much love x

Thanks ladies. :-)

Jo - yes, the sunshine is wonderful isn't it! I absolutely love it - could quite happily live in a hot country. I hope your swimming went well! 

Rosehip - you made me laugh: my consultant said exactly the same thing, "Annabel, knowing you as I do, I thought you would rather know." Yep! I completely understand not wanting to know - a friend of mine knew she could get this information after her all clear but never asked for it - she said it was just easier to save herself some heartache, which is fair enough. I don't think they routinely hand out this information, but you are entitled to know it so if you ask they have to tell you - like you say, I think in my case, my consultant just knew I'd want to know!

It's not easy information to have, but at the same time we are where we are - this is the reality and my personality being what it is, I have to deal with how things are, rather than a fantasy of how I'd have prefered them to be. It seems to me that there is nothing 'simple' around cancer!

Thanks again ladies. Lots of love to you all, 

Annabel. x

Hi Annabel, 

i think I'm going to be the same boat as you. My consultant was as shocked as I was when cancer was confirmed so they believe that a mistake was made with me also in 2009. They are now oing the audit and I am chasing to see what they find. Im determined to get to the bottom of how and why this has happened. I had a colposcopy is 2007 and was having yearly check ups till my final one in 2009 when I went back to 3 year smears. why why why cant they do smears every year! So many questions And frustrations, but at the end of the day I feel I have had a lucky escape And it has really opened my eyes and made me appreciate every day. chin up ladies and all the best xx

Hello Annabel,


i too had this happen to me. I was diagnosed in 2007 with stage 1b1. Had my smears and colposcopy fine at hospital, all came bsck clear. After I was diagnosed and treated with radical trac the audit showed 1st biopsy was taken from wrong part of cervix, 1st smear was moderate changes and second one was severe. They had released me from the care of the hospital after the second wine was wrongly read as clear.


due to the surgery I have lymphodema in both legs and I'm unabl to get pregnant. I have sued the hospital, they admitted liability but it's a long process. Xx