My screenings were always on time and my results were normal until my 2020 test picked up stage 1b2 cervical cancer. I had no symptoms so it was a complete surprise.

On the day of diagnosis I was given an information pack and in there was a letter asking if I wanted to see the results of an audit on my past test.

I ticked yes not really thinking much about what it meant, I did think it might help understand why I went from clear tests to cancer but it didn’t seem like a big thing at the time. I had a radical hysterectomy and thankfully no follow up was needed. Recovery was harder than I expected but I was in a good place.

Two years later I got a letter from my consultant asking me to come in. I hadn’t spoken to them since my diagnosis so it was pretty worrying coming out the blue with no explanation.

It was the same room as my diagnosis, the same masks, same everything. It wasn’t a great experience. My consultant said the audit showed my 2017 test had been re-evaluated and showed cin3 which essentially meant I could have had less invasive treatment as the cancer could have been prevented. That was it really, he said come back with any questions and encouraged me to focus on looking forward not back.

I didn’t know what to do with the information and an hour later the emotions came. Knowing what had happened could have been avoided was devastating.

The next day I called my CNS and asked for a copy of the report, I wanted details. She said it was incredibly complex and she didn’t really understand the results either so went to find a simplified version for us to discuss. I had another meeting with my consultant and another consultant a few weeks later where there was still a lot of medical jargon but it was explained my test had been assessed as ‘unsatisfactory with learning points’, and they showed me examples of slides of cells and what might have been seen under a microscope. It was quite useful but I still didn’t fully understand.

Nothing was provided for the patient, it was all in medical or scientific language and relying on the consultant to interpret

In the end I sent the results to the Jo’s Ask the Expert services which was a lifesaver. It helped explain what others hadn’t explained so clearly. It was incredibly helpful, even though it was frustrating as the explanation was largely that there’s a grey area in terms of clinical understanding and skill and I fall into that area. I get it, nothing is perfect but it’s hard when it’s me affected.

There are hundreds of women like me, and some are in far worse situations. I don’t know why we don’t talk about the audit process more and the fact screening isn’t always reliable. Every diagnosis is followed by an audit but there isn’t enough information about it to feel supported and informed about what’s happening, and so it can end up causing a lot of distress and anger, I see it often on the Forums.

It’s a balance of course as we need to encourage screening attendance and I don’t want anyone to think it isn’t reliable or important, we’re incredibly lucky to cervical screening. However, sometimes things don’t always work out how you expect them to. An audit could find something that couldn’t have been prevented, but sometimes, like in my case, it’s the opposite. Women must know the processes that can follow, have support throughout and be able to access clear information. I didn’t have symptoms so it isn’t relevant for me – but for anyone else with symptoms go and go it checked even if you’re up to date with screening, just in case.

My team have been fantastic but there’s a real need for awareness and training for professionals to deliver results and messages clearly. There was lots of needing to clarify or ask the lab to explain things instead of my doctors having the answers.

I am angry about how the whole thing went for me, but I don’t want to scare or worry anyone.

Audits are a standard practice after any cervical cancer diagnosis and important to help learning and improvement of the screening process, but we need to make the process better for the future

There needs to be more information and more support for patients, and health professionals need to have a better understanding of the impact the results of an audit can have and be able to guide a patient through it appropriately, that’s why I’m trying to raise awareness of the process.

If you’re waiting for the results of your audit or have just been told about it, you’re far from alone and there’s support out there – places like Jo’s. We just need to talk more about what an audit means and what to expect so whatever the outcome patients are ready and don’t feel alone.

If you are anxious or have any questions, we are here to support you. You can contact our Helpline on 0808 802 800 or use our Ask the Expert service here >