CGIN with no margin after a LLETZ

[rachel27]

Hi all,

I really hope that someone can shine a bit of a light on my situation. I would really love to find someone who has had the same issues I am having.

Feb = my smear test came back positive and I received a letter about a an appointment with the colposcopy clinic.

March = when I arrived at the hospital they told me I had CGIN. Rather than taking a quick sample as I had expected, I had a LLETZ there and then. I was totally confused, on my own and had no idea what was going on.

April = received a letter to say I would be discussed at this months medical panel

May = I didn’t receive any feedback until this month. I was told they had found high grade changes in the middle of the sample and mid grade throughout with no margin. They also said that they had found CIN which I had not previously been told.

Now = I have to go back into hospital in June to have another LLETZ in the hope of them finding a margin. I have been informed that after the procedure I will have to go through the waiting process again. I will not be discussed until the July medical panel, meaning that results and next steps would be discussed with me in early August.

It is driving me crazy just waiting around. I feel like I am back to square 1 and the consultant isn’t particularly comforting. He just keeps telling me to wait and see.

I really would like to know what my chances are of a clear LLETZ this time round and he just wont discuss with me what happens if this next one comes back without a margin again. He just says that what I have is more rare, not seen as often, and when it is seen its not usually in people so young.

The consultant has told me that if I wasn’t only 32 and without children then he probably would be looking at other options, but given my age and childlessness he wants to explore every option.

Is this normal for people with CGIN? Is this time scale normal? What are my options?

I would really love some honest answers and help.

Thanks

[Andi]

Hi Rachel, I am just seeing your message now. How have you got on since your first LLETZ? I hope at this stage you have got more answers and advice, possibly even clear margins on your second procedure?

[Linf]

Hi,

Firstly your not alone!

Bit of my history …

Feb 22 - Smere 3rd HPV pos 1st with cell changes
May 22 - Colposcopy told CGIN & Lletz there and then
Jun 22 - Results pre cancer CGIN & CIN3
Jun 22 - Told edges unclear and needed another Lletz this was booked for Aug.
Jul 22 - Discussed at MDT
Jul 22 - Told Aug Lletz had been cancelled … due to edge being almost clear and the lletz burning would have also treated cells left on cervix and didnt want to do unnecessary 2nd lletz due to being 30 and fertility.

Now waiting for a TOC smear in Nov

I think overall this process has taken around 12 months and it’s still going … I’ve tried to forget about it but still ofcourse think about it and hope it’s all clear.

Reading on here about others with CGIN & also looking on GOV website about GCIN really helped me!

Hope all goes ok x

[Tbcuz]

Forgot to say keeping everything crossed for your test of cure Linf, make sure to keep us updated

[Tbcuz]

Hi ladies

Hope you got some answers Rachel and keeping everything crossed for clear margins, if not we are here for support.

I too am 32 and have just received the diagnosis of CGIN with the results and next steps being reviewed in the MDT meeting later this month. It has felt like a long waiting game to get to this point and feeling a little deflated with the potential difficult decisions ahead. I am the kind of person that wants all the answers and to be in control which, in this journey is impossible, so this forum has been such a blessing as I try to be realistic about the road that lies ahead. Especially as I feel most research/ guidances is is relation to CIN and not CGIN.

About me: 32 year old with a 9 month old baby, was planning on TTC baby 2 later this year, but this journey had other ideas.

My journey so far:

May: Smear results show high risk HPV (3rd year in a row this was recorded) but this time showing cell changes, suggesting glandular

Early June: Contacted in the 2 week rule to Coloscopy. Given punch biopsy. (From subsequent reading and consultant discussions I am frustrated by this as it is well documented that the cell changes I was exhibiting are not detected via punch biopsy.)

Late June: results showed chronic cervicitis only (another thing I had to Google and reassure myself was nothing to actually worry about having never had this diagnosis before) but results were to be reviewed MDT meeting in late July

Mid Aug: Had LLETZ procedure following recommendation from MDT meeting that I could have CGN further up than they could biopsy.

Mid September: letter confirms I have CGIN (doesn’t currently say anything about CIN or margins, presumably not clear as it vaguely suggests further treatment/ investigation will likely be required). Case being reviewed in MDT meeting late September where they will feedback on my next steps.

Trying to not let my mind race after waiting 4 months for diagnosis. Grateful that it has been caught when it has but feeling daunted by what lays ahead. Specifically, in my case, my strong sense of responsibility for doing everything I can to protect my health for my living son vs my desire to give him a sibling one day. Know I should be counting my blessing for what I do have and not try to think about the things I might have to adjust.

Here to chat and learn from any fellow “rare” CGINers, sending love and strength where it is needed

[sunshine24]

Hi Tbcuz
Yes I too have cgin.
Smear in July revealed borderline cell changes so sent for colcoscopy which revealed cgin so had lletz treatment at the beginning of September which I now have to wait for the results after an MDT meeting,the waiting around is the hard part and keep feeling the worst case scenario lies ahead but trying to stay positive x

[Tbcuz]

Hi sunshine24

Everything crossed for a positive outcome from MDT. I actually read earlier on another thread that every CGN case has to be reviewed at MDT as it is rarer so histology has a closer look at the biopsy and the team of experts discuss, not necessarily because they found something of extra cause for concern.

[sunshine24]

Hi Tbcuz
That’s good to know,there is so much to take in isn’t there,it’s been like a whirlwind since July and really suffering after the lletz,got an infection and bleeding lots so just want it all to be over now ,I may have to wait untill the end of October if I miss the September MDT meeting so I will have to try and focus on other things or I’ll drive myself crazy xx

[Andi]

Hi ladies, I too am a member of the nasty CGIN club. I had my smear back in April…followed by a shocking phone call from the hospital booking department in July, to arrange my date for colposcopy. I had never even heard of colposcopy at that stage so this has been a major learning curve. Had colposcopy and LLETZ at the end of July and I am now entering week 8 of the results wait. I called the clinic at the start of the week as the doctor told me it should be back within 4-6 weeks. The secretary was really lovely but as always she couldn’t give me the result. She did say that the doctor had ‘signed off’ on my case in August and I will need a follow up in 6 months time. I initially got excited as I presumed this meant they got clear margins on the excision, but in hindsight I’m not so sure that this is necessarily the case. And there are so many cases of the wrong information being passed on over the phone. So still patiently awaiting a letter from the doctor. It’s amazing how something can fill your head at all times isn’t it?

[sunshine24]

Hi Andi
It really is isn’t it,it’s all I think about some days,I’m only 2 weeks post lletz so I have a long wait ahead of me so try to keep busy and take my mind off it all but so hard some days. Please do keep us posted when you finally get the results back and sending positive thoughts your way x

[Andi]

You too Sunshine, make sure to come back and tell us how you are getting on. It really is so reassuring knowing that we are not alone after getting this awful diagnosis. Best wishes x

[sunshine24]

Yes totally agree,it’s so great to be able to talk to people on here who understand and are going through the same thing,will be sure to keep you posted xx

[Tbcuz]

Hi Andi, that is so ridiculous that you have been waiting that long for your results! How infuriating! I know what you mean about lots of posts saying information relayed across the phone is not accurate but I’ll be putting out positive energy that your assumption is correct and there is (fingers and toes crossed) clear margins. Please let us know when you you get your letter. <3

[Andi]

Thank you Tbcuz, I will keep you both updated on my progress, if I ever get any! And please do let us know what the consultants come back with in your case - hopefully you won’t have long to wait now. X

[Tbcuz]

Hi ladies

I had my chat with colposcopy nurse this morning. I need to have another LLETZ, however one margin was clear so there is hope a second might produce clear margins (I will be putting out this positive energy in hope anyway).

Prior to this conversation and the MDT meeting, I had called the number on my letter as I have a flight booked at the start of November and remembered you are not supposed to fly 4 weeks before so I requested if a LLETZ could be booked ASAP and then cancelled if not needed so I didn’t need to cancel the trip. Thankfully this was honoured and I have my 2nd LLETZ next week on Thursday.

Not looking forward to the LLETZ recovery and waiting game again (know you are going through this atm @sunshine24 , hope you are recovering OK) but grateful that it is happening sooner rather than later.

Did you hear back yet @Andi , been thinking of you !

[Andi]

Hi @Tbcuz , lovely to hear back from you! Sorry to read that you need a further LLETZ, however from reading all the stories on here, it’s really common. And the odds are really in your favour since they can see a clear margin at one end. Hopefully the doctor/nurse shall target the correct area and get the rest of it removed this time round - and you can put this behind you and move on with your life, focus on TTC again. Unfortunately I am still none the wiser as I move into week 9 after my first LLETZ. Fed up of checking the post box every day when I get home from work. I called the clinic again on Tuesday and got more or less the same response, that I will be booked in for a check up in January as my body needs time to heal after the first treatment?!?!?, and a letter should be out soon. No actual result given over the phone. Good luck with your next round of treatment, let us know how you get on x

[Tbcuz]

Hi @Andi , I really think that sounds like a positive outcome I just really hope your letter comes soon to confirm it so you can put it to bed for a while. X

[kem393]

Hiya,

I came here looking for reassurance and information as I am also in a similar situation as you guys, but I’ve ended up so scared!

I had a LLETZ in Sept - I was expecting a colposcopy but the nurse rang me the day before my appointment to say they would be proceeding with the LLETZ straight away. When I got there she said the smear had picked up high grade cells which are normally further inside the cervix and rarely caught on a smear. Apparently this was good because it means they could do the treatment straight away. She showed me the area they needed to remove and said it was quite large. The LLETZ went fine and I was okay afterwards.

I thought I was healing fine but ended up in A&E passing huge clots (size of satsumas ) and bleeding loads - they think it was an infection and just bad luck as I had no warning, no pain, anything… I’ve now been given some mega antibiotics and they cauterized it again at the hospital, which seems to have done the trick The doctor who cauterized it said it was a large area that had been taken away so she tried to seal off as many blood vessels as possible.

On Monday I received the letter from the hospital which just says they have found CIN3 and high grade CGIN from the LLETZ and it will now go to the MDT on 8th Nov. I rang the hospital and the nurse confirmed that the letter means they didn’t get any clear margins but obviously couldn’t give me much more than that. She said I may have to have another LLETZ under general anaesthetic or they may decide to just monitor it (I’m a bit dubious that they would just monitor such high grade cells…). If they offer a hysterectomy then I will be happy to take it. I am 32 but I don’t want children and I’ve had the conversation with my partner (we both agree 100% on this) so I am completely at peace with having a hysterectomy.

I am just so terrified that the results will come back as cancer at some point and it will be the end for me. The cells being so high grade and such a large area has made the worrying so bad. I was experiencing pain during sex for a couple of years but didn’t really think too much of it. I attended my smear within the right time frame of 3 years and my last one was completely clear. When the nurse did the smear this time she said my cervix was very red and inflamed and it bled when she used the brush. I didn’t have any spot bleeding at all and I don’t have periods due to being on desogestrel, so I would have noticed any spotting.

Can they pick up cancer at this stage from the sample they took when they look at the MDT?

Are they just not telling me that it’s cancer yet because they want to talk about it first or would they call me in straight away if they’d found it already?

If I’ve attended my smears and the last one was clear 3 years ago, can cancer have even developed into something incurable yet? It seems that even high grade can take up to 10 years to develop…

Anyone’s experiences would be a reassurance, good or bad as I just want to understand fully what I’m up against here.

Kirsty x

[Hop1]

Hello Kem 393. I had same results as you CIN3 and CGIN no clear margins. I been under monitoring for the past 1 and a half years all my results have been the same no abnormal cells but still HPV. That means the Lletz worked for me and I didn’t need a second LLETZ because they couldn’t find any abnormalities even with no clear margins. If I get again a positive result for CIN or CGIN I could do another Lletz treatment but gynecologist said she wouldn’t do a 3rd one I am 43 with kids so totally happy with hysterectomy after that.
But no CIN3 or CGIN is not cancer and if your Lletz results is CGIN and CIN3 then that means you don’t have cancer.
The system is quite good and the thing about this is that we both caught this early and we will get treatment before it develops into cancer so I am just attending all appointments because is the only way to keep this under control.
Try not to overthink is the worst part. Good luck let me know how you get on

[kem393]

Thank you, that has really reassured me I’ve got a couple of weeks to wait yet but I’ll let you know how I get on.
I think the vague letters they send makes things worse as they say it’s a normal process and not to worry but they don’t explain what it means. The hospital have been great but they obviously can only say so much at this point.
Glad to hear the monitoring is going well and they are being diligent