Hi,
Would anyone know what I should be expecting with regards to treatment and recovery please.
A bit of background history…
My smears have been abnormal since 2019, have always shown high risk HPV. I have been having them yearly since. I had my first colposcopy which showed borderline changes. Then had another a year later which showed low grade and then most recently another showed high grade. Results were high risk HPV and HSIL - high grade dyskaryosis.
I was referred as urgent and saw a consultant oncologist on Thursday. I went in expecting and preparing for the worst case scenario would be a LLETZ there and then. Non of the leaflets prepare you for anything other than this.
He literally started to have a look and highlight the areas. He then said I can’t treat you today it’s far too wide spread and goes up somewhere? Can’t remember exactly.
His assistant asked if he was taking a punch biopsy and he said no, straight to treatment.
I have to go in to have a Cone Biopsy, a LLETZ and a Top Hat under general anaesthetic.
I’m not sure what to make of it all and what the recovery will be like? Do I need time off work etc?
I was a bit taken aback and unfortunately didn’t ask any questions. Other than I can expect a call from his secretary, I have no information to prepare or will this come in the post? Any similar experiences?
Thanks in advance for any info!
Hi SJBC36 and welcome to our group.
I’m glad you’ve found us, and hope you’ll find it helpful to be here. I’ll start off by saying I didn’t have the same experience as I went straight to a cancer diagnosis but hope I can let you know a bit more information.
When you had your colposcopy it can happen that the area seen is too extensive to treat there and then with a standard LLETZ. You’ll have the LLETZ done under general, and it’s then that biopsies will be done-the cone biopsy and top hat describe the area which will be removed. This type of procedure will need an anaesthetic but this will be much easier for you to undergo while you’re asleep and shouldn’t take too long to perform.
You may have some bleeding and cramping after the procedure so I’d recommend you have some time off to recover from the anaesthetic itself and the biopsies. You may need a couple of days off work but you shouldn’t have to be off too long. It wouldn’t be advisable to go back to work the next day for example, as that’s not recommended after a general anaesthetic for anyone but hopefully your recovery will be straightforward.
The tissue removed will be sent for analysis so there will be a wait for your results. The gynaecologist will want to know that everything has been removed with clear margins-ie the affected area has been successfully taken out with a margin of healthy tissue around it.
You might get information in the form of a letter, text or call to attend hospital for a pre op appointment which is a standard check to make sure you will be fine to undergo an anaesthetic. For me, and I’ve had 4 of them now, it was some simple tests-height, weight, and an ecg to check my heart was fine, swabs to check for mrsa, and a chat about my general health and that was about it.
I hope you don’t have too long to wait to get this over with and are soon on the way to recovery but if you’ve got any questions, please feel free to ask in the group.
Sarah xx
Just a bit of an update on my journey. I had a letter stating what was found during colposcopy. “Obvious high grade abnormalities with the possibility of CGIN in the middle of the lesion” I was unsure what CGIN is so had to google.
I am booked in to have my operation next Tuesday which I am both relieved it’s soon but anxious that there’s still an element of the unknown or uncertainty. I was grateful he said I could postpone the op until after my daughter’s birthday as we’d planned to go to a waterpark!
I scoured back through the colposcopy leaflet and it only covers a LLETZ treatment during your appointment. I think they need to add a paragraph in there. I know you’re not supposed to Google but what else are you supposed to be when information is minimal or non existent 
I never wish time away but I’ll be glad when Tuesday has been and gone and can focus on recovery in time for summer 
Hi SJBC36
That’s good you have a date to get this over with. I agree that everyone seems to say we are not given enough information, so I can understand why people Google although I don’t agree that’s a necessarily helpful thing to do. But I do understand people looking for answers. It’s best if you are using Google to stick with reputable resources like Macmillan and CancerResearch UK where you can have confidence that the information there is accurate, researched and reviewed.
Hopefully the post treatment results will show that everything has been successfully removed and you can get on with your recovery. Best wishes-it will be done before you know it!
Sarah xx
