(0)
0 Items £0.00

LLETZ results - seems procedure was for nothing?

13 posts / 0 new
Last post
Little.miss.Sunshine
LLETZ results - seems procedure was for nothing?

Hi ladies

I had my LLETZ on 2 February and after a long and anxious wait I had my results letter come through in the post today. The letter says that the treatment showed CIN3 and HPV and that I need to come for a cervical screening appontment in 6 months.  So the good news is that the removed cells didn't show any cancer, but I have no idea if the HPV and CIN has been removed and there was no mention of any margins. I already knew that I had CIN3 and HPV before the LLETZ procedure so that surgery now feels somewhat pointless, as the point of the surgery was to remove those cells? I've endured months or anxiety and weeks of pain and seems I'm no better off than where I was when I had my colposcopy results? Grateful for your thoughts.  💕

libby123

Definitely not pointless as if you'd left the cin3 it could have developed into cancer. It just means that they tested the sample removed and that as expected, cin3 and hpv found. So good news. They then do another smear in 6 months and will test you for hpv as often the lletz treatment will kick your immune system into fighting the hpv infection. I think if your'e hpv negative at your follow up, you then are considered cured and return to 3 yearly smears.

 

Little.miss.Sunshine

Thanks lovely. Just hope they got it all. Concerned there may still be abnormal cells left if there was no margin, or that there could be cancerous cells higher up that they didn't see. The letter should really be clearer. I had HPV at my last colposcopy appointment 12 months ago too, so seems my body hasn't been able to fight the infection off yet.  Very grateful that the results haven't shown cancer, and I'm sorry if my post seems insensitive for those of you that have had worse news - that was not my intention 💕 going to give them a call next week to get more information. Will keep you all posted. Xx

libby123

I know what you mean, you just want a bit more clarification that its all gone. Hopefully when you call them they can say if they got a clear margin. I know they say that the as lletz burns around the edge, that usually gets any left over. I was told the lletz is 98% effective so fingers crossed for you and having the lletz procedure should give your immune system the kick it needs to fight the hpv infection. 

Lemon Lavender

Hi lovely, 

 

I'm so happy for you! Great news that they've got all the abnormal cells.

 

I was similar to you in that I had CIN III identified on my smear. My LLETZ treatment unfortunately didn't get clear margins though so they are taking it to a discussion at their next multidisciplinary meeting. 

 

During my LLETZ I was also treated with diathermy ablation to try and get any left over cells as the consultant had seen this was needed at the time too. 

 

The HPV unfortunately cannot ever be removed. Once we have it, we will always have it. But the hope is that it will go back to lying dormant because our bodies have fought it off. Fingers crossed for both of us that due to the LLETZ our bodies are now triggered into fighting the HPV virus and allows it to go back to lying dormant. AND eventually we can go back to 3 yearly smears with no changes detected again xx

11/1 Routine smear

26/1 LLETZ 

16/3 MDT - Biopsy sent for further tests

Diary of experience: https://www.jostrust.org.uk/forum/cervical-screening-smear-test/what-were-your-waiting-times

Katie34

I think what's confusing is why they need to send it off if they already know what CIN it is from the smear and the colposcopist is sure it is only CIN then why does the sample then need further testing, why do we not just have the treatment and follow up. 

Katie

libby123

Its needs to be fully checked in the lab to confirm. I had a smear show high grade cin3, colposcopy then punch biopsies show cin3, only when I had the lletz the results came back cin3 plus tiny amount of cancer cells found too. Because of that I then needed a cone biopsy and more regular follow ups. 

LalaRolls

Hi Katie, they don't *know* for sure prior to histology although they can usually take a pretty good guess. They have to send the sample for histology to confirm it though. It's not uncommon for people to get a slightly different result on smear than on biopsy/excision.

2015 - normal smear

Missed a few years 🤦🏻‍♀️

13/01/21 - Smear

16/02/21 - got called for urgent colposcopy

17/02/21 - smear results arrived - high grade (severe) dyskaryosis & HPV

18/02/21 - colposcopy & LLETZ 

24/2/21 - offensive discharge, prescribed antibiotics 

8/3/21 - sent to A&E due to passing clots, discharged same day

18/3/21 - LLETZ results - carcinoma in situ, margins clear, 6 month follow up

 

Katie34

The wait feels like the worse part, I was holding onto the colposcopist saying it's possibly CIN2 but I got a letter through that goes to the doctor as well which says it was sent as urgent 31/62 (from googling I think this is a cancer pathway/targets) which has made my mind go into overdrive. Really hoping it stays the same as the smear 

Katie

Little.miss.Sunshine

Thank you lovelies. Appreciate all of the support. Will let you know what they say. Hopefully if mine isn't being discussed further and they are only seeing me in 6 months it means they are confident it has been removed, or my hospital just isn't as thorough as yours Lemon. Who knows. Wish they gave us more information so we understand fully what is going on, without googling. Is physically and psychologically tough enough as it is, but the forum has been a big help. Nice to have a community of support. If anyone has any questions on my experience so far feel free to ask. Big hugs to you all. 💕

candyandstripes

Hi Little Miss

My letter was exactly the same. I called and it meant they thought they had it all as margins were just about clear and they think when they burn it shut, that would have killed any remaining cells. The reason they don't write about margins in all areas is a lot of people wouldn't know what's that means x

Nov 2020: Smear

Dec 2020: Colopscopy - CIN3 Severe

11/1/21: Lletz

20/2/21: Results showed CIN3 - removed by Lletz. Smear test at 6 months 

Little.miss.Sunshine

Thanks candy. That is very helpful to know. Hopefully it is the same with me. Couldn't get through today but will hopefully have an answer tomorrow 💕

Little.miss.Sunshine

I've spoken to the hospital and apparently I do have clear margins on what they've removed. 🙏💕 I wish they would put that in the letter and give us the full report.  Keeping everything crossed for positive news at my smear in 6 months' time (and that I will stop thinking about this every day by then). Big hugs to you all. Xx

More Information

Abnormal cervical cells and treatment

Read about HPV