Hi everyone,I had my lletz for CIN 3 cell changes in November, and my colposcopist phoned me over Christmas to say that my pathology results had shown ‘an area with microscopic cancer’ and that it looked like the margins for this area were clear, but my case will be discussed in their MDT meeting at the end of January.
I’m just wondering if anyone has been in a similar situation and could maybe share what I should expect next? The colposcopist sounded positive that it had all been removed but I can’t help be sceptical that there won’t be further treatment or investigations? If I’m honest I kind of hope that there is more to come so they can be sure it’s all gone!!
I had the same last year. I was given the diagnosis of stage 1a1 cervical cancer. There were three tiny foci, each under 0.2mm. I also had a small area where the cin3 came right up to the margin of my lletz. For this reason, I was given a further lletz which was actually free of any abnormalities. It had all been removed with the first procedure. I’m very grateful that they checked though! I also had an MRI scan to double check there was nothing else of concern. However, I was told this was more to follow procedure and they didn’t expect to find anything further.
I’ve just had my 6 month follow up check and am now HPV negative, which is a huge relief. My consultant said that without the HPV present, there is no concern regarding further problems. However, they still want to monitor me closely so I will have two further checks at 6 month intervals, then yearly after that for 9 years.
Any questions, please ask. Sounds like you’re similar to me.
Good luck, xx
Thank you so much for taking the time to reply! It really does sound like we’ve had a similar experience! Thank you for explaining what I could expect afterwards! I’d got it into my head that I’d automatically have to have a hysterectomy so it’s reassuring to know that may not be the case!
Good luck with everything, it sounds like you’re now going from strength to strength! Xx
The team treating me did suggest I may need a hysterectomy but from the start they thought this would be unlikely and the second lletz I had confirmed that it wouldn’t be needed.
If the cancer is microscopic and all removed with a lletz the follow up seems similar to what it would be if cin3 were found, although more thorough (which I think is good!)
I found the emotional side of the diagnosis harder to cope with. It gave me some health anxiety which I’m still aware of. My cancer nurse referred me for counseling which helped. I’m now just over a year on from the smear test which found the abnormality and, to be honest, I feel great now. It really made me look at my life and start prioritising myself, and my health, more.
Sending love, xx
Ah yes that makes sense! I think I’ve built it all up to be worse in my head so it’s good to hear your side!!
I definitely know what you mean by the diagnosis having an emotional impact, I haven’t even been officially diagnosed yet and it’s just constantly on my mind! When I first told my family that cancer had been found but they thought it had been removed I had messages saying ‘so glad to hear your good news!’, but just the word ‘cancer’ has knocked me and I can’t see it as good news yet!
Thank you so much for your replies, after hours of googling, it’s really nice to have someone in a very similar situation! Xx
My advice would be to stay away from Google (hard I know!) This forum helped me enormously plus the information pages here on Jo’s. If you need to speak to someone about it, ring the helpline. They are great!
I’d love to know how you get on if you want to post an update.
Lots of love, xx
I recently had a cone biopsy and they found a stage 1a1 tumor (0.5 mm deep x 2mm diam). It was removed with clear margins. A simple hysterectomy was recommended. I went for a second opinion and was told I should get a second cone biopsy first, because one margin wasn’t clear of cin3. He wanted me to make sure there wasn’t more cancer there because that could change my staging and the type of hysterectomy I should get. I had the second cone, and surprisingly they found another small tumour but a bit deeper (3.5mm deep x 1mm diam). This upped my staging to 1A2. The ecto and endocervical margins were clear but the deep margin wasn’t (I’m not sure what that means exactly but could mean there’s some residual cancer left behind). I’m in Australia and they now recommend radical hysterectomy, removal of pelvic nodes and to do it abdominally not laparoscopically. This came as a blow to me because it’s been removed already and it wasn’t much bigger. I contacted a doctor in Europe and one from Toronto Canada (where I am from) and they say that is overkill. They feel its still safe enough for me to have minimally invasive surgery and that I should get sentinel node biopsy to check the nodes before just removing them all. It’s so hard when you get different recommendations like that. Some places are way more conservative. But just goes to show, if your margins aren’t clear of cin3 it is worth doing another procedure to see what’s going on beyond that margin!
I am in a slightly different position to you as I have CGIN. My first lletz had no clear margins and a suspected focal point of cancer.
MRI has found a small lesion, one radiologist believes cancer the other scar tissue.
My second lletz has come back completely clear of everything. Now waiting on MDT to decide if they agree with my consultant of no further treatment, personally I would rather a hysterectomy to be sure!
Hi Sandi, I’m so sorry I didn’t reply to you sooner but I’ve only now seen your message, I’m so sorry you’ve had such a hard time! I’m so glad you’ve shared your story though because I’ve been a bit worried about something my colposcopist said, she said that they don’t check whether my lletz margins are clear for CIN 3, they’ve only checked that the area that had the cancer have clear margins. Thanks to you I’ll make sure that I get all the areas checked,because you never know!! Hope you’re doing ok? And hope you have a good support network? Xx
Thank you for replying! Sorry you’ve had a tough time too , I’m glad your second lletz came back with good results ! I hope the MDT comes back with good news for you, the waiting is awful isn’t it!? Xxx
Yes the waiting is by far the worst part of this!!! Best of luck to you and just try to keep positive
Yes my first doctor wasn’t concerned about the margin with cin3 but the second doctor was. They should never assume anything! It’s way better to know what’s going on before proceeding either bigger surgery/treatment I think otherwise you may have to go back and do another bigger procedure, which is what I would have had to do if I hadn’t gotten the second cone biopsy done. You can tell your doctor about my experience now as an example of what can happen. It’s not as common to have multiple tumors but it does happen.
hi @Sandi I am new here. I relate with your story, I had my LEEP done 4 weeks ago, they found CIN2+ microinvasive cell carcinoma (in fact 2 focis/focus, which all together measure 1mm*1mm)
surprisingly my dr wants to wait and see, for 3 months! in order to see if I have still HPV16, and if yes, then we will decide, another leep or hysterotomy. I am desperately trying to find a new dr!
how are you now? did you get the hysterotomy?
@Dreamland one more question, the second leep was under GA? The leep was done with a electrical wire?
Hi @Sandi may I ask you how are you nowadays? What was the treatment you finally chose?
The first lletz was local anaesthetic. The second one was meant to be local but the doctor didn’t feel he could be sure of removing enough tissue so he recommended a general anaesthetic for the second one. It turned out that I had healed really well and there was no evidence of abnormal cells during the examination for my second lletz so they took only a minimal amount of tissue in the end.