Cancer Missed by Screening

Hi Joey987 

I haven’t been in the same situation, but I hope you’ll get some more replies now I’ve nudged your post up to the top again.

I’m really sorry to read your cancer was missed in screening-I’ve had concerns since the new protocol for testing was adopted where there’s no cell testing when ladies have an hpv negative test. I appreciate that the percentage of cancers which are non-hpv driven is small, but as your situation has shown, testing itself is not infallible, and symptoms are not always present with early invasive cancer.

Prior to my own diagnosis, I was very naive about cervical screening and always thought it was a test for cervical cancer, which of course it really isn’t. 

It must be hard to live with the knowledge that cancer could have been identified earlier for you, especially when we are encouraged to go for testing when called up for it and assume everything is ok when we are told we don’t need further testing.

Sarah xx

Hi Sarah, thank you for the response I appreciate it!  I think sadly most people don’t really know all that much about it until you experience something first hand or through a friend or relative and then often it’s too late. I wish there had been more education about it at school etc. and think it’s a real shame it seems to be missed, hopefully things are changing these days. x

Hi Joey987,

I finished treatment in July and had my first follow up scan a couple of weeks ago. Will be seeing the consultant in a couple of weeks to find out if the treatment has worked or not. 
I only found out that I had cervical cancer when I had my ovaries removed in April. I have never missed a screening appointment and have never had any problems or call backs. Everything has always been fine.  Like you, it bothers me because if I hadn’t had that op, how much longer would it have been before it was discovered?  They say it’s slow growing and can take 10-20 years for a tumour to develop so why has there never been anything wrong with any of my screening results?  
Hopefully all will be well with you and I wish you the best of luck on your journey. 

Hi!  I’m so sorry, that must have been a real shock and hard to come to terms with.  I have everything crossed for your upcoming scan results.  Yes you’re right, about 10-20 years - they’ve now moved screening to every 5 years if you have a negative result to reflect this (which has its own issues in my opinion as there’s no wiggle room at all for any error!)  If you are interested to find out you can have an audit done into your smear tests to find out what happened, I did this and it showed by cervical cancer was caused by an untested HPV strain (hence why all my smears were negative).  It helps me to understand why it happened but equally it’s frustrating either way, but worth a thought if you’re interested to know what’s happened and think this would be helpful. X

I didn’t know you could request an audit. I will ask the consultant when I see her. It’s good that you have an explanation, it must help in coming to terms with the diagnosis. 
I think I’ve been quite lucky really. It was stage 1b-2a when it was discovered so really treatable. But if I hadn’t needed that operation it could have been much worse. I’m a massive believer in things happening for a reason and I’m thankful that I needed the op in the first place. 
Thank you for your advise, I will look into getting an audit done  

Hi.  

I started having post menopausal bleeding in the December of 2022.  Went to my GP and I was referred to a gynae chap.  He examines me and said he thought I had an infection!  I did tell him I was a 60 year old grandmother and I had been in a monogamous relationship for over 40 years.  He prescribed me antibiotics.

When I was reviewed, I said I was still having bleeding and pain.  I was then sent for an internal ultrasound, which showed no abnormalities.

I then had a smear test that showed I was HPV positive and abnormal cells detected.

Then sent for further investigations and told I was CIN 1 and it would likely sort itself out, and they would recall me in 12 months.

Still having very heavy bleeding with clots and a nasty smell, (down there!) I went back to my GP and was sent for an MRI.  

August 2023 my MRI results  showed I had a large suspicious mass taking up two thirds of my womb, one of my kidneys was very enlarged due to hydronephrosis and I had enlarged lymph nodes in my pelvis and groin. Stage 3C2. By this time I was having chronic pain and several visits to A&E where I was bleeding so much, being sick and in a lot of pain. 

I was both elated and shocked all at the same time.  I really felt I had been gaslighted by the all the medical people I had seen.  I had just been patted on the head and told there was no problem and sent on my way.So I felt validated that it wasn't me going bonkers, but shocked that the cancer had spread and the diagnosis was clearly late. TBH I knew I had cancer by this point.  I was just literally waiting for somebody to confirm it.

I had radical, awful treatment, which appeared to be successful.  But less than 6 weeks after getting the all clear, I found an enlarged lymph node just above my left clavicle.  Had a PET Scan and was told that I was now stage 4 as the cancer was widespread in my lymphatic system affecting the abdomen, chest and neck,  with a prognosis of 2 years.  That was in July 2024.

So have I just been unlucky? Because I do feel I was let slip through the net and despite me telling people "I think something is wrong." I feel several opportunities for a diagnosis earlier, were missed.

Hello, thank you for responding and I’m so sorry to hear about your story - it sounds very atypical and doesn’t sound like the screening system worked as it should for you at all.  It doesn’t sound like the CIN1 diagnosis could have been even remotely correct for it to have changed so drastically in such little time. If you had had a clear screening test before that one, then surely it must have also been a false negative, as it takes about 15 years to go from a persistent HPV infection to stage 3 cancer (this was similar to my case / trajectory too). 

There’s a lot that’s still not understood about HPV and I feel the screening system has been far too ambitious too quickly, in numerous different ways.  I was shocked to read that 15% of women over 65 have a persistent HPV infection (the highest rate for all age ranges) - and coincidentally the same age range where you are no longer eligible for screening because you’re deemed “too old”.. it’s so illogical and in my view it is rooted in both ageism and sexism.  Anyway, that’s my rant over for the day! 

I am truly sorry to hear about your recurrence, that must have been extremely difficult, not least after feeling let down in the first instance.. and I’m sending all my positive energy that you will plateau and have many, many more happy times to come with your family and grandchildren!