Cancer Missed by Screening

hi joey 987

this is exactly the post I came back on here to find as I appear to find myself in a similar position. I had my vault smear after my hysterectomy this week and I questioned how this had all happened: I’ve been told that I had an abnormal smear way back in 2005 that showed cell issues. However in between that and my next screening the system changed to screen for HPV and cells were only then tested if HPV was detected however because I’d had the abnormal cells they should have done both tests.  I have always shown HPV NEGATIVE tests so they never screened the cells again, I then developed cervical cancer. 
I’ve chased my audit because I want to understand exactly what happened, at the moment it appears to me that my cervical cancer could have been avoided if the correct tests and screenings had been carried out as they should. 
I’ve been told that from now on my screenings will test cells and screen for HPV, but that’s of little comfort when this absolutely all could have been avoided, 

I will be seeking legal advice once my audit is received. 

Hi Martha, 

Firstly I’m so sorry that this has happened to you too, it’s distressing enough to get a cancer diagnosis full stop but when you feel like a system has failed you that you previously trusted and relied upon, it really feels like the ground has been pulled from under you.  I hope you are doing okay.

Hopefully the audit result will help answer some of your questions and this will be of some use to you - I know that mine was to me.  Even though it doesn’t change anything, it helped to understand what had happened to get to this point and stopped my mind going in circles quite so much.

In my case the HPV strain which supposedly caused my cancer isn’t tested for, and I don’t have any of the higher risk strains that would have flagged up.  Since they stopped testing for abnormal cells and switched to HPV this is sadly an issue that is going to continue to happen to some women, but because it’s not deemed common enough they won’t do anything about it.  There’s also the chance that you can have an entirely HPV negative case, which is uncommon but still happens, and again these cases slip though the net.

I also spoke to a couple of solicitors, free of charge, and found this helpful.  In my case it wasn’t possible to pursue further but your case could be quite different to mine so it’s definitely worth looking into.

All the best x

Hi Joey - I think mine was missed. I have a tumour that’s between 5.7-6cm on my cervix. My last smear 3 years ago was clear, I was due one in Oct but it was cancelled because of heavy bleeding. I also had a transvaginal ultrasound for pelvic pain where they didn’t see the mass a year ago (I have yet to understand how it can grow that quickly in 12 months but maybe it can) and I have never had an abnormal smears. But I had a kidney stone and they said that’s what the pain was.

Mine is SCC of the cervix, and was only diagnosed after an hysterscopy this Nov found the mass, and I found out two weeks ago, and start induction chemo next week. I did read that smears were only 50% reliable.

Hi Yennefer,

I’m really sorry to hear that. Those dates / events definitely don’t seem to add up as to how it is meant to happen / develop. Did you know you can request an audit into your smear tests for them to try to work out why it was able to develop into cancer despite you going for smear tests? It might be something to consider if you think that this might help you - I found it quite helpful.

Best wishes x

Hi Joey987,

• I had a similar experience all my smear tests were negative and I ended up with stage 2 CC apparently smear tests are not so accurate with adenocarcinoma vs squamous cells as it starts higher within the cervical canal.. back then I used to have smear tests more frequently than recommended and even that didn’t pick this up so you are not alone! In the bright side I had the treatment and I reached the 5 year cancer free threshold back in November. Luckily cc can be curable for many cases so be strong and have faith xxx

Hi Joey I was the same, I'd had smears regularly, my last one 2022, all clear for hpv, I didn't realise they dont routinely test the cells. That was my last scan because I was 65 last year. I had one bleed in October, i have a 5cm tumour in my cervix, no other symptoms. Im stage 2b and on chemoradiotherapy for 5 weeks then 3 brachytherapy. Theyve said it hasn't spread and they've staged it because of the size, also said treatable with curative outcome. Ive been telling everyone i know to be mindful of any changes, dont leave things. I feel a bit failed

Lesley

Hi Maria,

Thank you for your reply and it does help in a strange way to know that I’m not so alone in what’s happened, although I don’t wish it on anyone either of course!  I’m so pleased to hear you have had your 5 year free moment, that’s absolutely amazing news and always good to keep the bright side in mind as you say ️ 

best wishes

Hi Lesley, I’m really sorry that’s happened to you despite doing everything you could have. It’s such a shame and very frustrating that we can’t rely on the screening and we’re the ones who have slipped though the net. That sounds really really promising though and I wish all the best for your treatment and hearing positive news as soon as possible! 

Hi, 

I have been interested to read this thread as I have been through similar. 

At 63  I was diagnosed with stage 1B2 Adenocarcinoma.

I  had attended all my screenings, all clear, one in 2018 before the new protocol of HPV testing, which was clear, then 5 years later 2023 came back abnormal. No symptoms. 

My only focus was treatment. The cervical screening audit was initiated automatically. I did not have to request it. 

I had a radical Hysterectomy in Dec 23.

I have serious concerns about the new protocol of 5 year testing particularly for those ladies 35 plus who did not get the vaccine at school ( also the many who refused the vaccine ) 

The Adenocarcinoma is higher up the cervix and from posts I have read on here  it can often be missed. Five years is a long time between tests. I understand  cases of Adenocarcinoma are  on the increase 

The audit only goes back ten years. My result was 

'Satisfactory with learning points' 

It was, a terrible shock to be told you have cancer when you think you have attended all your screenings and been given clear results. 

I am grateful that mine was caught and I had treatment but it shows that screenings are not 100% in detecting abnormalities. 

Personally I would urge caution. React to any symptoms and don't be fobbed off  by Dr's if you are told your cervical screening result was normal so there can't be a problem. 

Best Wishes to all dealing with this. 

Serena77

Hi Serena

Thank you for sharing, and so sorry you have been dealt some variation of this too. I agree, 5 years is too long - and leaves absolutely no wiggle room or margin for error (which we know there will always be). It’s really disheartening that something preventable hasn’t been the case for us. 

Also totally agree with your comment regarding symptoms being totally dismissed if you are up to date on screening - it creates a really dangerous blind spot that I encountered too.  I believe the false negative rate for HPV testing alone is about 10% which is still quite worryingly high.

Best wishes

x