Cervical cancer/ CIN query

[CancerRegistry]

Afternoon all

I had a successful Lletz procedure a few years ago. The GP and I were both informed it was CIN2.

Attended the hospital recently & it was mentioned I was at higher risk of other cancers due to being on the cancer register. Apparently it was CIN 3.

Hospital said there are checks & balances in place before a patient is placed on the cancer registry and it is not an error and that perhaps I misunderstood at that time.

GP checked records and original letter definitely does not mention CIN 3 only CIN 2. She said CIN 3 is definitely cancer - cancer in situ although my searches online on reputable health sites (NHS/Macmillan) states this isn’t cancer.

I am so confused and upset. I have requested pathology reports. Has anyone else been in this situation or can offer any words of advice?

I have reached out to Jos Trust in the meantime who are passing me over to ‘Ask an Expert’.

Thanks for reading.

This is very interesting. I had CIN3 in 2018 and was told it was pre cancerous and not cancer. I have been diagnosed with ovarian cancer this year. I wonder if they’re connected and should have been monitored?!

@AGreatUsername wishing you a speedy recovery. If Jos Trust does say there is a link I will update you.

I have had CIN 2 and 3 and carcinoma in situ and they are different things.

CIN 1, 2 and 3 are all pre cancerous cells with 3 being the most severe and widespread on the cervix and will change to cancer if left.

Carcinoma in situ are cancerous cells that will go deeper and spread if left. It was explained to me like a grade 0 cancer if you like.

You should of had yearly smear tests for at least 5 years with a CIN 3 were you not given that?

Hello, I had CIN3 cells removed a few years ago, I wasn’t told anything about it being cancerous. My cure smear came back good and they confirmed they’d got it all. I had googled the outcomes myself and read that CIN3 was the highest grade before turning cancerous

Nope. I had one smear 6 months later and because it was HPV negative was put back on 3 yearly. I had one smear in December which was not tested due to the HPV negative result and in may was diagnosed with stage 3 OC via ultrasound.

Are you having annual smear tests? After CIN3 I was told I'd have at the very least annual ones for 10years!

Sorry @AGreatUsername You had already answered.

I am 3 years post CIN3 and I'm still under the hospital and will remain so. Shocked your treatment was so short.

@MissBridgetJones well so am I now you’ve both said that 🥺 We just assumed that was the norm! I’m actually feeling a bit sick now, what if my OC could’ve been picked up earlier. Mind, I only had it on the ovaries and in lymph nodes so maybe a smear wouldn’t have spotted anything anyway. I’ve had a full hysterectomy now and no longer have a cervix to worry about.

So sorry you have gone through this.

I think it is unlikely that it would have spread from the Cervix but I'm not a Dr. If it had spread it would have been picked up on scans etc...... I would assume its just totally shit luck. I'm hoping you get the all clear soon xxxxx

Thanks for all responses. Shocking that not all women are on annual smears after CIN3

Even if I did have CIN3 not CIN2 then why would I be on the cancer registry?

Why would a GP insist CIN3 is malignant? I didn’t mishear her - I literally said my understanding was CIN was pre cancerous and she said not CIN3, that’s carcinoma in situ and is classed as having cancer.

Does anyone know how the cancer registry works?