Hi all, not quite sure where to start with this but this forum was my first go to.
I was diagnosed with Cervical Cancer on 21.01.21.
I had a radical hysterectomy on 01.03.21, safe to say it’s been a roller coaster, bt I don’t need to tell all of you that
The cancer was picked up on my routine cervical screening in November 2020, I had been clear of anything on any screening before that, never had any symptoms
however…
… my consultant asked to see me yesterday as he had received results back from an audit they had carried out on all of my screening up until November 2020, part of the cancer diagnosis process.
I was told that the results of the audit had showed that pre-cancerous cells were found on my screening in 2017 however this was reported as clear.
I was told that if this was picked up in 2017 (as it should have) then my treatment would have been very different, I basically wouldn’t have had to go through the last two years of hurt and worry and pain, it’s such difficult information to process.
Im sort of in the same position as you. I had clear smear (including for hpv as im in Wales) in 2019. In sept 2022 diagnosed with cancer and also had radical hysterectomy with lymph node removal in November 2022.
I have been informed a audit will be done as a matter of course but not given any results of it yet.
I suspect the results will be similar to yours. Already its a really mixed bag of emotions. I presume if found earlier for me it would have been a simple hysterectomy rather than a radical and alot of the side effects and worry for lymphodema would not have happened.
I dont really know what to say other than i feel the same.
I just wanted to reply to this even though it’s a slightly different situation to you ladies and I’m so sorry to hear what you’ve been through.
I had a smear feb 2022 which showed HPV but was reported as “no cell changes”. I wanted to have a baby so paid privately for a repeat smear test 9 months later as my GP refused to do it early so that I could try to conceive. That smear came back severe high grade. That was in December.
I had my lletz just 2 weeks ago. Needed 2 colposcopies. First I had 3 biopsies and they were all clear. I had to fight for another appointment and at that appointment the biopsies found CIN3. That’s why I’ve only just had my lletz as it took so many months and multiple appointments and issues/inconsistencies.
Because of all the anomalies they reviewed all my smears at an MDT meeting. They found that my smear in 2022 had been undercalled and should’ve been borderline cell changes.
So firstly I’ve had a smear that was incorrect, a colposcopy that was incorrect and also cells that developed very rapidly (from borderline to CIN3 in 9 months)
Just proves that they can get a lot wrong and if they end up missing something at one appointment, things can actually progress quite rapidly in some cases.
I know my situation is a bit different. I am still waiting for my lletz results and hoping it’s just CIN3 and it’s all gone. But there were so many mistakes and inconsistencies with my case I just thought I’d give my insight.
Thank you both for your reply, it’s so heartbreaking that others are and will be in the same position as us.
Due to my surgery (everything was taken away including lymph nodes, tubes, ovaries whomb and cervix) I’ve been in menopause for 2 years and now struggle every day because of that, I’m a shell of who I used to be… if the pre-cancerous cells were picked up and treated in 2017 I would not have to had the mammoth surgery I’ve had and all the other effects that it brings, it’s such hard news to come to terms with!
@Wjg it’s taken 2 years almost to the day for the audit results to come through so you may need to wait a bit longer, however after speaking to an expert via Jo’s Trust she has advised me of some questions to ask my consultant and to get a copy of the report so I’m waiting for that now. In my head for my peace of mind I need to know what went wrong and if anything can be learnt from it.
@Asc fingers crossed for you that all is OK, my fingers are crossed for you. The consultant said that screening is only 85% accurate which was a surprise to me as labs processing the screening have very strict standards to follow and have a run rate of between 90 and 95% success.
he also said that’s why any symptoms shoudl be reported to your GP as screening is only 85% effective… I had no symptoms therefore why would I question a smear result that was OK?
If you ladies don’t mind me asking you , what happens next do you take this to a solicitor or what ?
I have stage 3c1 cancer treatment it’s difficult and I know I’m awaiting the results of the same as yourself audits of old.smears as I have never been told to have abnormal smears just straight into cancer stage 3
This thread makes me sad I really hope u get some sort of justice for what’s happened I’m sorry that it’s happened you all xx
Hi…I havent really looked into what if anything happens next. I dont have it confirmed yet that there were mistakes on my previous smear. I think that must have been the case though as surely i cant have gone from completely clear smear to 1b2 cancer in 3 years. Im still really concentrating on recovery from my radical hysterectomy with lymph node removal and trying to get back the old me. I dont really know how to think about it…part of me says they cant be 100% correct in all smears but the other part is angry with everything ive had to go through because of it.
I also dont know if legally it is accepted that there is a margin of errors or not. So for now im concentrating on recovery and will look at all this when i have my results confirmed and feel a bit stronger. Im very interested in other peoples thoughts though.
I had my initial diagnosis of 1a1 last week, I’ll get the results of my MRI and X-ray later this week and the plan. I had a negative smear in January and have had clear smears on ever occasion since 2010, so to say it’s a shock is an understatement. I’ve been desperately searching for answers and have spent this morning on my NHS app. I was surprised to see that in 2017 an ectropion was noted by the nurse, but no action as HPV negative and in 2020 nabothian follicles were noted by the nurse, but again HPV negative so I never knew about this either. If I’d not gone to the GP about my only symptom, bleeding after sex, it’d be another three years in the dark.
I’ve been told it’s part of the process to be angry, and that there will be an audit, but how unlucky must I be. I had four biopsies, three confirmed cancer, one CIN3. How?
I don’t appear to be a great advert for cervical screening. I’ve done my bit and yet here we are x
