High Grade CGIN

Hi,

I've been reading the posts on here and they have been so helpful but I feel like I need to write just to calm my mind.

I had my smear a couple of months ago and was asked to attend a colposcopy soon after as I had HPV and abnormal cell changes. I had a LLETZ at that appointment, which was uncomfortable (the speculum part, the actual LLETZ was surprisingly ok) and today had a follow up appointment where I was told I have high grade CGIN and that unfortunately the results of the LLETZ show they didn't get clear margins.

So, I have been advised to have another LLETZ and am now worrying that they still won't get everything and then the only option will be a hysterectomy. Is there anyone else out there that had to have a second LLETZ? If so, did you have the all clear afterwards? Or is there anyone who chose to have the hysterectomy as a preventative measure? Just knowing I'm not the only one (which in my head I already know) would really help. I'm 40 if that makes a difference. Thank you!

  • Hello RiniBB and welcome to the forum.

    I'm sorry the lletz treatment was not successful on this occasion but fingers crossed the next one will be.  

    We have had quite a few posts about multiple lletz treatments within in the community so hopefully some of our members will pick up on your post and get back to you soon but if you feel it may help to talk things through with one of our cancer nurses, you're very welcome to give them a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi Steph,

    Thank you for your reply. I think speaking to someone would be really helpful so thank you - so easy to catastrophize when you have only your own head to have the conversation with!

     

  • Hi, similar diagnostics here, abnormal cells CIN3 back in 2017. Had 3 times LLETZ, which was done as under anaesthetic for me. Unfortunately, after my last smear test/ colposcopy, they have discovered more abnormal cells and couldn't get to them just with LLETZ, so hysterectomy was the suggested option, which I had agreed with. This was in Dec 2018, when I was 36. Me and my husband don't have children and never wanted any, so really for me was an option I could take more easily than other women I guess. The only other problem might be now, the precancerous cells might appear on vaginal walls so have to keep an eye on that now, every 6 months or so. 

    It is different for everyone, of course, but overall for me, the hysterectomy was the right choice and had recovered really quickly . Of course, most people don't understands why I had to have it at such an early age, but why risk having cancer ? I had full trust in my gynecologist and surgeon and all was really smooth, as it happened I got an appointment about 10days after deciding to have it, so didn't have time to change my mind 

    It is important to have the right conversation with your gynecologist and check your options carefully.

    Best of luck, keep me posted

  • Hello all, 

    I've joined this group as I am going through something similar. I've had a positive HPV result for the last 6 years, each year the same. This years smear in January showed I had HPV and abnormal cells, I was sent for a colposcopy in February and this came back as pre cancerous changes, my case was discussed at an MDT board at the end of March and the decision was to have a cone biopsy, this was done on Friday 5 April and I've felt okay apart from a little uncomfortable as I had a catheter and packing in place. I'm now awaiting the results, I do hope they got all of the cells and it's shows clear margins. The day before the surgery I also had a breast biopsy as I found a lump, but I'm not too worried about that. I'm 45 currently peri menopausal but unable to take HRT until I get the results, I'd be happy with a hysterectomy but I have to wait to see the outcome of this. 
     

     

  • Hi Lavlea, 

    I noitced no-one has got back to you just yet so I just wanted to stop by to wish you good luck with your results and let you know we're thinking of you.

    I hope this article I've found on how to cope with waiting for news will help you during this anxious time but if you'd like to discuss your situation with one of our nurses, you can do so on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very insightful and will do all they can to answer your questions you may have and put your mind at ease.

    I do hope you hear from others on this discussion but as it was last active in 2021, that may not happen. If this turns out to be the case, do feel free to reach out to others on more recent discussions about this topic or you can start your own.

    Kind regards,

    Steph, Cancer Chat Moderator

  • How'd are you heard anything more

    I'm going through it now so scared it's been 4 weeks had op lletz and biopsy got called in high grade cgin and suspicion of cancer sent me for MRI now waiting on results all pointing out bit good they mentions hysterectomy scared it's spread as last smear was like 6 years ago inconclusive