Smear audit results

Cervical cancer post treatment and side effects
1

Hello all,

I received the results of my smear audit on 12/5/16 and am struggling to get my head around the findings.

First a bit of background…

I was diagnosed with cc adenosquamous 1b2 in November 2015 aged 32. I had always attended smears, my first being in 2003. They had always been negative. My last smear was February 2014, also negative. I went to the GP in October 2015 after experiencing four episodes of bleeding after sex during September 2015. I had just started a new contraceptive pill so thought it might have been related to that.

The GP wasn’t too concerned but referred me to a rapid access clinic at the women’s health unit in my local hospital. Following a colposcopy where punch biopsies were taken I was told on 25th November 2015 that I had cancer, and so the roller coaster began.

Long story short I had radical hysterectomy with removal of ovaries and 23 lymph nodes on 6th January 2016. Histology of everything removed seems to suggest they removed all cancer, I was downgraded to 1b1 and no further treatment was required.

Back to the audit findings… They only go back 10 years to retest the samples taken, so for me that was 3 out of the 4 smears I have had in my lifetime. It transpires that my results in 2007 and 2010 which were reported as normal, when rechecked both showed borderline changes and the result from the 2014 smear which was reported normal actually showed high grade CGIN when rechecked. The audit report concluded that if any of the three smears had been reported correctly I would have been put on a different screening pathway involving a 6 month recall in 2007, a colposcopy referral in 2010 or an urgent colposcopy referral in 2014.

I know that any screening process isn’t 100% perfect, but I feel incredibly unlucky (and fairly angry to be honest) that I have had three false negatives in three consecutive smear tests over ten years.

I had just started to feel like I was getting back to my normal self emotionally and had started to come to terms with everything that had happened to me over past 6 months and now it feels like I’m back to square one. I know there is no point in saying ‘what if?’ because l can’t change what has happened, but I can feel myself starting to struggle psychologically as it all just seems so unfair. I know it could be a lot worse, and I feel lucky to have avoided further treatment, but I’m still finding the audit results hard to accept.

Has anyone else been through a similar experience and if so, have you got any advice on how to move on?

Apologies for the long post, and thank you for reading.

x

2

Oh sweetheart this is just awful! I really cannot get my head around why they do this. What on earth does it achieve? OK I can understand that those carrying out the smear tests need to have their work checked so that mistakes are illiminated. But why on earth do they need to share those findings with the patient? Yes I know that it's very fashionable these days to be 'transparent' but what if that transparency achieves nothing at all but anguish? In my opinion you have just been psychologically assaulted and you should lodge a complaint. Not necessarily against those who reported your smears incorrectly in the first place because no doubt there are protocols in place to protect those people. But I think you should lodge a complaint against the people who thought it was in some way clever to let you know the results of the audit. I think it is an irresponsible practise and it should be stopped.

(((((HUGS)))))

xxxxx
Tivoli

3

Hi Mad_muscrat. I fully understand how you feel as something very similar has happened to me just a few weeks back. I had asked for my audit results ages ago, and the actual report was written over a year ago, but I was not shown it. It appears as though the smears were ok but the colposcopy was not done correctly and the proper protocol was not followed. This resulted in any changes there might have been at that time not being picked up, and therefore not being called for close monitoring. I was actually told that I would not have developed the cancer had the proper protocol been followed. I too had all my smears when I should have done and went for the colposcopy on time too. Like you this has come as a real knock sideways. I have lots of mixed emotions and anger is one of them. As yet I am not sure how to handle it, but I know it's the last thing you need when you are trying to get your life back again. I am planning to discuss it with a lawyer as I feel I need to do something with it, but I will let you know offline if you are interested. Hope you find some peace, because feeling anger is no good for ones health, physically or psychologically. take care x

 

4

Hey,

PM'd you with my experience.

We were diagnosed on the same day!!

Take Care

XX

 

 

5

Thank you all for your replies.

Feeling a bit better today, but still struggling to accept what has happened.  Hopefully over time I will be able to move on.

x

6

Hi ladies

I had the exact same thing. Clear smear Jan 2012 and diagnosed and started treatment June 2013. Turns out smear in 2012 showed high grade changes with liklihood of cancer which delayed my treatment and in all liklihood allowed cancer to spread to my lungs.

I'm not going to lie, I sued. I actually settled my case last Monday for 6 figures as my NHS Trust admitted liability. I will now be able to give up work and be mortgage free. It doesn't make up for their mistake but it will help me enjoy myself and I fully intend to. I would be happy to give details of my lawyer who was amazing throughout and actually trained as a Dr before turning to law. But the most important thing to me was my apology form the hospital. I'll be getting it in writing soon and it'll male a big difference to me.

Everyone is on their own journey but I think hospital should be accountable for their mistakes as it can impact on our lives. Good luck to you all.

Anna xxxx

 

 

7

Wow! Anna that's brilliant! So pleased you got a fair result. That does really change my perspective on this. If it's possible to get compensation for stupid errors and it doesn't simply cause unnecessary anguish then I am all for it. Thank you so much for putting me in the picture.

Enjoy your life! :-)

Lots of love
Tivoli
xxxxx

8

Hello

I asked for my smear audit results a couple of years after my surgery because I felt I needed final closure. They were not automatically provided to me and my consultant was not aware they did not get results (even if the results were incorrectly reported).  I was shocked when i had my appointment last year which highlighted my smear 3 years before diagnosis was incorrectly reported as borderline rather than normal and the smear leading to my diagnosis was incorrectly reported as borderline rather than abnormal.  I felt unlucky and it brought back a lot of upsetting emotions and the realisation that maybe if my previous smear had been correctly reported maybe I would never have gone through all the stress, upset and injury of diagnosis and the resulting surgery.  I will never be the same again.

that said, I feel lucky to be alive and maybe earlier diagnosis could have prevented my cancer but it was still cgin and perhaps the end hysterectomy or cancer result would have been the same.

the consultant apologised and explained how it was missed.  She went through their learnings and what had been implemented as a result.  My slides are now being used to help train those reading smears at my local provider.  without my query they would never have received the audit result and been able to put any of this in action.  So I am pleased with the outcome, even though it was upsetting to get the results.  The consultant now routinely requests all smear audit results for cancer diagnoses so they can look for learnings and implement policies / training as a result.

it is devastating to think cancer could have been avoided or picked up and treated earlier but you can't change what has happened.  in my case I had no symptoms and a smear actually prompted my diagnosis and saved my life (even if the grade was incorrect).  So I try to hold onto that and forget the rest......

kirsty x

9

This happened to me a few months ago. Found out smears in 2009 and 2012 were incorrectly reported. My first colposcopy treated for ectropion, 3 months later biopsies were taken. The rest, as they say, is history. I just felt there was no point being angry or dwelling on it, as it was done and can't change anything. Maybe that would have been very different if the cancer had spread, like the lady above, but thankfully I had a positive outcome. Maybe it's also to do with the fact that I'm a health professional, I really don't know. I won't say it didn't affect me a little, but I've moved on. Hope you find some peace xx

10

Tivoli, I was told at diagnosis that they audit all smear history for any lady diagnosed with cervical ca. It was up to me to request to see the results if I wanted, which I decided I did. My consultant made an appt to see him to talk everything through, and I can get back.in touch about it if I need to. Xx

11

This happened to a friend of mine too! Two of her four smears were wildly wrong. She got a massive pay out but it didn't bring her womb back when she badly wanted a family. It's crazy tat so many smears can be wrong! It scares me if I'm honest.

12

Thank you ladies for all your replies!

AnnaYorks it is scary isn't it?! Even though I have become a bit of a campaigner to raise awareness of cc and encourage people to get smears I then feel a bit uneasy as don't want to share my story in case people think there's no point in going for smears as I still got cancer!

I have another meeting with the hospital in August to find out how they have changed procedures etc but I think I may still pursue it legally if I am not satisfied with what they have to say.

I feel strongly that I may not have had to have the rad hyst if any one of the three smears had been reported correctly. However, I am eternally grateful to the NHS for listening to my concerns when I had symptoms and treating me quickly (and hopefully effectively) once I received my diagnosis.  I also know it could have been worse if I hadn't trusted myself to know something wasn't right as I wasn't due another smear until Jan 2017 and by then it may well have spread.

I'm still in the early days of getting back to 'normal' but hoping I will get some closure and be able to move onwards and upwards as time goes on.

x

13

Hi Anna,

Are you able to private message me please? It’s with regards to smear history. I don’t know how to do private message :woman_facepalming:t3: Thanks, sarah xx