So I recently had a LLETZ procedure for CIN2 which went fine and I’ve been waiting for my results letter to come thinking nothing of it, thinking it will all come back clear and expecting another smear a few months afterwards, however, my letter arrived today and says I have an appointment booked in 4 days time for review and discussion of my results.
I’m none the wiser as to what this actually means and what they could possibly say to me. I am worrying but trying to keep collected and grounded.
So it’s been two weeks since I had my LLETZ, I got another appointment letter through on Saturday, which is with a clinician, but no result from my LLETZ as yet, so I can only assume they want to discuss it in person?
I’m thinking maybe it’s not clear margins or something, not entirely sure.
What about yourself, I hope everything is going well for you x
Hey, ok makes sense. Well done for staying so rational and calm, id probably be freaking out a bit but as you said i reckon the liklihood is they may need to discuss if you want / need fuether treatment based on biopsy or margins. This may depend on your age and whether you still plan on having children. Sometimes if youve completed your family theyll recommend a 2nd lletz if the margins werent clear, but if you havnt they may give you the option of monitering with 6 month colposcopys.
You mentioned the lletz was for cin2 which is classed as moderate rather than severe- so 2nd treatment isnt always necassary, it could be that the biopsy has found some cin 3 instead and they need to discuss etc.
These are all theories based on reading tonnes of peoples experiences - im certainly no doctor !
As i said try to stay calm and dont think the worst
Good luck and keep us updated on how it goes.
(My lletz was 2 weeks ago tomorrow for cin3 and still waiting on results) x
Yeah, exactly. Could be a positive margin or something along those lines. I’m trying to think positive because my first biopsy before the LLETZ said there was no evidence of cancer, which has been reassuring.
I will keep you posted
Ahh here’s hoping your results come back soon, stay strong and as positive as you can x
I’ve been for my appointment earlier today and was informed I had microinvasive cancer cells which were removed during my LLETZ which has left me feeling strange that I had it and now I don’t, however, they need to do a second LLETZ under GA to ensure there is 5mm clear margin around the area x
Im sorry to hear about your results - i can imagine its a lot to digest right now, especially as they tried to reassure you that you didnt have signs of CC.
It sounds really positive that they caught it early and sounds like its already been removed and dealt with. Equally good they want to be thorough and go in for a 2nd Lletz to be sure everythings gone.
Obviously not nice having to have more treatment and recovery and i can imagine your head is in a bit of a spin!
Think positively - it sounds like its caught very early and will be over soon! Always here to chat if you need x
Hey,
Thank you for replying
It was abit of a shock to be honest but I can only be thankful it was caught super early and I am grateful that it has pretty much all been removed.
Just awaiting a date for the second LLETZ as this has to be done under a general now due to the scar tissue from my previous one.
It was pretty surreal because I am now under the gynaecology oncology team and got a macmillan pack and everything.
I’m so pleased I went to all my smear tests and colposcopy appointments though.
Yeah 100%.
Good luck with the 2nd lletz, bit scary being under GA but im sure itll be quick and healing will be the same as before.
Yeah cant imagine receiving all that official paoerwork and seeing the dreaded C word on paper. As you said youre so lucky youve kept on top of appointments and caught early.
2.5 weeks for me now and still waiting, although no news tends to be good news so im remaining optimistic x
How are you getting on @Ellieeira? I hope you got some positive news from your results.
I had lletz on the 2nd and just the the phone call today that I’ve to go in and discuss the results. My head is all over the place, but trying to stay positive that the news won’t be too bad. I’ll be finding out on Friday so at least the wait for that isn’t too long!
Ahh good luck! Have you read the thread above with @JessiicaD s results? It may be that yours are similar and fhey may need to let you know they found some microscopic cells that have hopefully all been removed.
3 weeks post lletz and still waiting - which im taking as a positive as it seems most people get a call within 2 weeks if theres anything abnormal to discuss.
I think sometimes it depends on area for waiting times. Im in east london and was told i wont hear for 6-8 weeks. Where are you girls based? X
I hope you’re staying positive @Ellieeira
I can’t believe they’re still making you wait for your results, I’m based in South Somerset here, so quite rural.
@Kirsty Yes, it could well be there is something that has been an unexpected finding, this is usually why they like to talk to you in person, whether it be a higher CIN, not all cells removed or cancerous cells found x
I’m in North Ayrshire. I had a 12 week wait for my smear results, but it seems to be moving quite quickly since then. Those results came through on the 28th of October so within 3 weeks of the results I will have visited colposcopy, had lletz and had the results back.
When I got the letter for colposcopy the information sheet with it said lletz results take 4-6 weeks but at the appointment I was told it would be 2-3 weeks. Not sure if they fast track it when they suspect anything or if waiting times have just improved since the sheet was printed.
At colposcopy they said there may be microscopic cancer there but she couldn’t tell for sure so that’s what I’m expecting to hear tomorrow. Hopefully it’s already been removed like yours @JessiicaD Did they give you a likely timescale for the second lletz? x
It is quite unexpected when they tell you that you did have it, but it was such a relief that they believe it has all been removed. I’m hoping yours has been removed also and it’s positive, keep us updated x
I have my second LLETZ booked in for weds 29th of this month at the day surgery where I am, they phoned me yesterday to book it in.
I hope it all goes well at your appointment @JessiicaD!
I got the news on Friday that they did find cancer cells, stage 1a2 but it was all removed with the lletz. I’ve got a meeting with the MDT on Wednesday to discuss hysterectomy or monitoring going forward. She said it would likely be every 6 months for 5 years, but to be honest I think I would just be constantly worrying for those 5 years so probably just going to ask for the hysterectomy.
It feels bizarre knowing I had cancer and it’s gone already.
Thank you! I am nervous but mainly because I’ve never been under a general before so not really sure what to expect, which I think is the worst part - that unknown.
Oh bless you, it is such a surreal experience, but very positive that they believe they’ve removed it already with the LLETZ.
It’s such a personal choice isn’t it, I’m going for this second LLETZ instead of having a hysterectomy but mainly because I’m 32 and would love more children at some point.
I had my letter through on Saturday and it said that my margins are 1.4mm clear, so not really sure why they need to be 5mm clear? I’m so positive that it has all been burnt out.
Hi everyone I hope you don’t mind me jumping onto your thread.
I had CIN2 removed in 2017 but recent abnormal smear and colposcopy confirmed VAIN. Abnormal cells (just like CIN) but in the vagina. Hardly anything around with much support from what I’ve found for VAIN. Seems quite rare. Suspected VAIN2/3 but awaiting biopsy results.
I’m waiting my results too. My letter said 6-8 weeks but my gyne said 2.
@JessiicaD The unknown has been the worst all the way through this! But you have managed everything else so far so I’m sure you will be amazing with this too.
Did they tell you what stage you were? A second lletz wasn’t offered when I got my results, just a suggestion that it would be surgery or monitoring going forward. I had clear margins so maybe that’s taken into consideration too. Maybe they like 5mm to be clear to be sure that they aren’t leaving behind even one cell.
I had the meeting with the MDT yesterday - my head is in a bit of a spin. They have said they’re sure all the cancerous and pre-cancerous cells are gone as there were clear margins. Next I’ve to go for an MRI to check my lymph nodes and see if it’s spread. He said he’s expecting that to come back negative but any microscopic cancer could be missed so the treatment is getting my lymph nodes removed and a hysterectomy at the same time. Still lots of waiting for me. The MRI is on the 7th.
I’m 39 and my daughter is 13 so no more children planned for me, but it’s still a strange one to get my head around.
@Daffydaffy so sorry to hear your news. I don’t know anything about VAIN but at least it’s been picked up and you can start fighting now. I’m sure you’re in great hands. I hope your results come through quickly!
Hoping you’ve had some good news through @Ellieeira
@Kirsty I 100% agree that all the waiting throughout this process has been so difficult and anxiety inducing at every turn, aww thanks lovely! Same for you too! You’ve got this!
So, they said it was microinvasive so could only be seen under the microscope at the lab, so I’m thinking it was probably 1A1 or something, very small and early stage, I’m going to ask on my surgery day if anyone knows for certain.
What stage did they say yours was at?
Ahh, I think they must take individual circumstances into account, she did say if for any reason it comes back or I get nmore problems some years down then they would recommend a hysterectomy but I felt that wasn’t for me as I would like another child soon, my son is 15 already! Lol
It is fabulous that they don’t even take the risk of leaving even one cell behind, I guess it really is your life in their hands.
That’s so positive and I’m so hoping your MRI gets the all clear too. Wishing you every bit of good wishes for your surgery too! Make sure you get the time you need to recover too x
@Daffydaffy I’ve also not heard of VAIN but I have come across AIN which is abnormal cells in the bottom area. I’m feeling positive for you that this has been identified and you can now get some treatment to ensure this doesn’t spread. I believe they offer CO2 ablation? Sending hugs x
@Ellieeira Hope you’re getting on okay and have had some good news on your results x
Hi girls,
Always reading this thread and thinking of you all. Cant believe what a strong community of women we have on here , you are all amazing.
I called the hospital yesterday to check on results anf they said theyre still waiting, so the wait continues for me.
But honestly reading this blog helps so much, im not even stressing about my results. You lovely resilient ladies will support no matter what the outcome.
Lets all just come focus on the festive season ahead and think positive thoughts. Weve got this!
