CGIN, CIN1 and Cone Biopsy

Cervical screening results
1

Hello there,

I've been reading this forum for the past few months and found it a great help and support. I've finally registered and thought I would write a post to see if there's anyone else out there who has been through a similar experience to me.

At age 29 I went for my first smear this February (silly to leave it so long I know!), and received a phone call from a consultant 10 days later to say that my results were abnormal and that I would need to attend a colposcopy to investigate further. I was told that often people are sent for a colposcopy as a precautionary measure but that this wasn't the case for me, and it was likely they may find something - the 'C' word was mentioned! This felt like quite a surreal moment, not least because I had just descended from the 72nd floor of The Shard, where I'd been on a work outing!

I was booked in for my colposcopy 2 weeks later - the soonest appointment available the consultant told me. This was then changed to 1 week later when I had a phone call from a slightly panicked sounding doctor letting me know I could be seen sooner due to a cancellation. I went for my colposcopy after an anxious weeks wait. The nurse and consultant were very friendly and really put me at ease. On first look nothing could be seen with the colposcope, and after acetic acid had been applied only a couple of faint areas appeared. They took 2 biopsies, another smear and an HPV test. I asked what my smear had indicated and the nurse told me the results were glandular and severe. I was told that usually results are posted but that I would be able to receive mine over the phone if I called in a weeks time. So, I called and got results of the biopsy a week later which were negative, much to my surprise! I was also told that I tested positive for HPV. I had to wait another week and a half to get the result of my 2nd smear which came back as CIN1, contrary to the first result. I was given the impression that my initial smear result may just have been an anomaly. I was told the results of 2nd smear took the time they did as were looked at by everyone in the lab to ensure correct diagnosis, as the initial result had been so serious... It was left on the 26th March with the nurse saying I would need to come for another colposcopy in 3 months, which I should receive a letter for in a month's time. In the meantime they would be having a meeting.

Fast forward 2 months and I received a phone call out of the blue on 23rd May from the nurse to say they had had an MDT meeting concerning me and decided that I should come in for a Cone Biopsy in the next month. The surgeon had a couple of dates free and we agreed that it would be best for me to come in for the surgery without seeing the surgeon beforehand to discuss things, in the interests of taking timely action.
So I'm I'm booked in for surgery on 19th June.

I'm a little concerned by how things have developed. It seems to me that my initial smear results were a big concern, hence the speed of my treatment. Having read up on CGIN it can skip layers, so it may well be present but not have shown up on my colposcopy or biopsy. And because they had been relying on the results of the biopsies and 2nd smear they have delayed treatment which could be vital to my good health.

I know that CGIN is more rare than CIN, and there is less information on it and possibly less medical knowledge. Has anyone else had a similar combination of results? What was the outcome of your treatment? Any shared experiences would be a great help at this worrying time.

Thanks x

2

Hi

It can't be easy as you are getting told different things but this could be the results are inconclusive as this happens with CGIN (I also had glandular cell abnormalities and was told it skip lesions, my results came back as early stage 1A1 but after my cone biopsy I was told it was only high grade precancerous cells - ).

At my next appointment I arrived with a list of questions, made sure each question was answered so I understood it. They even draw a diagram so I could understand where the cells were.  And they showed me the results in Medical File. I was at the stage where I was going to write in for my Medical Records .   My consultant told me sometimes at Colopscopy they take punch biopsies and mine were inconclusive, but they could see areas affected when they put the acetic solution on and I had what looked like a small tumor less than 4mm . The Consultant told me this could be a lesion from previous surgery or  electrical instructment used in LOOP procedure the Consultant did when I went to Colpscopy clinic for a second time for more biopsies. He recommended the Cone Biopsy as both Treatment and Investigation- he did mine cold-knife so their was no possiblity of lesions from electrical apparatus and it would give him a clearer picture as sometimes with Glandular they can't see higher up in the cervix (at the Colpscopy).

I had a Cone Biopsy under GA, had an overnight hospital stay (this is not common). To be honest when I was in Recovery Room I thought I had not had the procedure. I had a couple of parcetamol and a few days spotting.  The  worse part was I had built up in my head it was worse than the reality.

It may help to take somewhere with you next time as well . I foudn this helpful as if I misunderstood something the other person clarified what was said. I found the list of questions I made beforehand helped me at the appointment/ pre-op appt.  If you have already signed the Consent Form you can still ring and ask to speak with the nurse specilaist at Colpscopy Clinic.

Good Luck

xXXX