Results from diathermy loop excision - CIN3 and high grade CGIN

Hello ladies,

Firstly, apologies for posting about something that I know there is some information on - however, I’ve looked at the posts and they don’t fit quite with what I wanted to ask, plus they’re mainly from a few years ago. I also want to say that I feel for everyone and your individual situations, I feel bad asking for advice on something that might not be as serious as other people’s situations. All I can ask is that you take pity on my confusion!

So I had my first ever smear test in August, as soon as I turned 25, and the results came back as moderate dyskaryosis (no CIN grading was given). I then attended the colposcopy clinic in September and was told there was an area of low grade change that was nothing to worry about. The nurse told me to go on my planned holiday as normal and booked me in for a diathermy loop excision in October. I had that done last month and have just received my results from the hospital. Well I say I’ve received them, I’ve actually been copied in on a letter to my doctor’s surgery that simply states: “The histology has been reported as CIN3 and high grade CGIN. We have arranged to see this patient in the smear clinic in six months time”. That’s literallty it, no explanation, nothing!
So typically I’ve been googling all weekend (dangerous!) and meant to ring the nurse today but completely ran out of time due to a busy day at work. I’ve looked up CGIN as I didn’t even know what that was, and as I understand it it’s cells further up your cervix towards your womb?? Now that doesn’t sound good, and a lot of the ladies on here who’ve had that have been advised to have a hysterectomy if they’ve already had children.

The thing that really bothers me is they haven’t explained what my results mean, they haven’t told me whether my margins are clear and they don’t want to do a further check such as a hysteroscopy (I think that’s what it’s called!) to see whether there are more pre-cancerous cells further up! Does anyone have any experience with this? I think I’m going to ring the nurse tomorrow but would love to hear some advice from ladies who have been through any of this themselves :slight_smile:

Thank you so much in advance xxx

Hi Lolly,
Don’t apologies for asking anything, Jo’s is the perfect place to ask things, share experiences and get some support :slight_smile: I haven’t had the same experience as you with CGIN and CIN3, however I can relate to the results letter and the limbo feeling of ‘is it gone, am I ok, everything I’ve read before contradicts what this letter is telling me…’
I had a LEETZ done after my first smear test too (lucky girls we are!) and received the same letter (although I think it’s a standard thing, like three people were CC’d onto mine!) although mine confirmed CIN2 with abnormalities reaching the edge of the biopsy area. I was fully expecting after this little gem to read on and find ‘please return to the colposcopy clinic etc’ but instead it just said to book a smear with my GP in 6 months. EVERYTHING I have read suggests if the margins are unclear you go back to the clinic rather than your GP! However I could only find information on unclear margins CIN3 rather than CIN2 - the lower grade may mean this is why I go back to the GP.
I’ve read on here about margins not being reported on if that part of the machine is broken so that could be why you don’t have any info on margins. As for going back to your GP they may be confident that they got everything in one go and that’s why you haven’t been referred for anything else (that’s what I’m telling myself lol) but I think you’ve definitely got the right plan of action with calling the nurse :slight_smile: coping with the emotional fall out (not wanting to sound too dramatic lol) after having something like a LEETZ/Loop diathermy is bad enough without getting confusing medical letters! let us know how you get on and stay positive :slight_smile: x x x

I am in the midst of waiting for my results so I cant help with the specifics of yours. However, I do think that if there was anything they were worried about they would be seeng you sooner than 6 months! So try and look on the positive side, they’ve removed the nasty cells and are happy to put you back on 6 montly smears

take care lovely
xxx

Hi Lolly,
I am in a similar situation and can share your frustration and bewilderment. I received my results at the weekend which confirmed CIN 3 and advised me to have a smear and HPV test in 6 months time. No confirmation that everything was removed, no mention of margins…which is what I thought the whole point of LLETZ results were!!! I have been trying to call the hospital for the past 2 days (but like you, I’m finding it hard to keep making phone calls when I am at work - too busy!!) but so far have only managed to speak to a receptionist who couldn’t offer any insight other than “I would assume you are OK”. I do not understand why hospitals send out such brief results letters when they must surely know that people want details!! Especially in relation to something potentially related to cancer. I am going to try calling the hospital again tomorrow - I also have a GP appointment on Friday so will speak to her as well.
I hope you get some explanation soon. I am guilty of getting Google-happy too but I would try not to worry until you have spoken to a nurse/doctor. It would seem we are both in the clear for the moment but I share your need to be told exactly what is going on.
Good luck and keep us updated! xx

Hi Lolly,
Just thought I would update you - I spoke to the nurse at the hospital who looked at my notes and spoke to the doctor. She confirmed what I thought which is that I had unclear margins :frowning: Still annoyed that they did not put this on the results letter - this is pretty vital information!! She said that the cauterisation of the wound may have got rid of the rest of the cells, so we just need to wait and see in 6 months time. Part of me tells me to trust the doctor and forget about this for 6 months but there is also part of me that thinks if they have left some CIN 3 cells in, surely leaving them for 6 months is a bit risky?? I just have a bad feeling about this all (hypochondriac at the best of times). I have been googling and read that those with unclear margins have a higher risk of recurrence :frowning: Feel teary!! I just wanted good news and now feel that I will be scared for the next 6 months. Has anyone had unclear margins and had a clear smear 6 months later??

Hi ladies,
Thank you so much for your replies, have only just had a chance to come back on here and read them (am at work, shhh don’t tell!) Also wanted to wait until I’d spoken to the nurse - I phoned the hospital on Tuesday and left a message for her to call me but still hadn’t heard anything so chased it up this morning and she called me back about 15 minutes ago.
I think it’s basically the same situation as you worriedyetoptimistic - she didn’t really mention margins but she said they wouldn’t want to do anything before 6 months to allow the wound to fully heal and also to see whether the CGIN goes away on its own (I asked her to explain what that is and I was basically right, it’s pre-cancerous cells in my canal so basically inside my cervix leading up to my womb). I said I was concerned that obviously these cells won’t all have been removed because they’re higher up, but again she said that by going in and removing the other cells and cauterising them it might have had a knock-on effect and mean that the CGIN clears up.
Am personally not convinced and am now worried about there being cells that get worse in the next 6 months. Between my smear and treatment 2 months went by and my moderate dyskaryosis progressed into CIN3 so I’m worried as to what might happen in 6 months. I’m guessing the nurse doesn’t think there’s anything to worry about but then how can she know for sure when they haven’t actually seen the CGIN with the colposcope!? She said they’ll do a smear of inside my cervix with a different type of brush in 6 months, so I guess I’ll just have to wait until then.
I’m debating whether or not to make an appointment with my GP to discuss, as surely they’ll have the detailed results on file? Or maybe I should ring a nurse at one of these cancer charities to discuss my fears. It’s just all so confusing isn’t it!
Your messages have made me feel more positive though, so thank you girls :slight_smile: Worriedyetoptimistic, have you found out anything else re. unclear margins and the follow up smear? I wish we only had to wait 3 months, I could cope with that! Chin up lovely xxx

Hiya Lolly! I'm glad that you got to speak to a nurse at last but it sounds like you came away with more questions than answers (just like me!!). I think it is definitely worth chatting to your GP as otherwise you'll drive yourself crazy going over all the "what ifs". I'm seeing mine tomorrow - worryingly, when I got through to the slightly inept receptionist at the hospital when trying to get hold of a nurse, she bought up my details on the computer and said my GP only got sent the same letter that I got (i.e. virtually no information) but I'm guessing the GP will be able to get hold of the lab reports if she wants to. Even if she doesn't have the specifics of my LLETZ biopsy, I'm sure she must have seen a lot of patients with these problems so it will be good to get her perspective (and hopefully reassurance). I also progressed from moderate dyskaryosis to CIN 3 in 2 months - I'm wondering whether we were CIN 3 all along and the initial tests only touched on a less affected area or whether the cells did actually mutate and worsen (another question for the GP!). I don't know about you but I keep looking for and finding pain in all sorts of places now (abdomen, back etc) - I've turned into a complete worrier (which is why I am off to the GP - not leaving anything to chance!!).

If the nurse thinks you might be able to clear the CGIN naturally, it might be worth doing whatever you can to boost your immune system (more fruits and veggies, take multivitamins, drink green tea etc). Not sure if this actually makes a difference but I am willing to try anything :)

From my googling, I have come across a few things about people with unclear margins then going on to having clear smears. The fact that our nurses/doctors seem confident enough to dischrge us must mean that this is what happens in most cases (right?!).

Sorry for the long, confused ramblings but my mind is all a jumble!! I keep veering between really worried and then really optimistic (hence the username!!). I'll let you know what the GP says :)

Hey Lolly! Hope you are enjoying the weekend. Just thought that I would update you on my GP visit :) I am fortunate to have a really nice GP who listens and cares (from past experiences with other GPs, I realise this can be quite rare!). She reassured me that cervical abnormalities are taken very seriously and I would only have been discharged if the consultant was confident that everything had been removed. In relation to my worries that the abnormalities worsened over time, she said that the labs tend to classify according to the highest grade of abnormality found i.e. if what they removed contained both CIN2 and CIN3 areas, they would classify it as CIN 3 (this kind of makes sense in my case as the biopsy results that came back after the colposcopy were CIN2/3). Finally, because she could see that I was still worried, she said I could come back in 3 months for a visual examination of the cervix and that if she spotted anything out of the ordinary, she would do a smear. Overall, she helped to calm my fears and reassure me. Maybe you could ask your GP whether you can come back in 3 months too? Have you managed to speak to anyone to talk over your concerns? I would definitely recommend doing it, I feel my sanity returning again!!

Hi hun,

Sorry, busy week! Thanks so much for letting me know how your GP appointment went. I haven't managed to book one yet but feel less worried just seeing what yours said to you :-)

It definitely sounds like a good idea to ask if I can go back in 3 months though (well it'll be 2 now!) as I'm not really comfortable waiting 6. I might take a print-out of what you said and ask if they'll do the same (if you don't mind!)

I'm so pleased they managed to reassure you and that you're feeling better about things. Would love to keep in touch via private message to find out how everything goes if that's ok? It definitely helps talking to someone in the same situation.

Enjoy the rest of your week xxx

Hey Lolly,

Sure - please take a print-out/a list of questions when you go for your chat - I have found in these past few months that I go to the doctor with a head full of questions but only remember about 2! I am sure that if you ask to be seen in 3 months that they cannot really object - from what I read on the internet 3 months is the usual time in the US to have a follow-up, so it is quite weird that we have to wait double the time here in the UK. You would have thought there would be a general consensus on this kind of thing.

Definitely PM me when you need to vent/share/ask anything. You are right - it really helps speaking to someone that understands this craziness!!

Good luck and keep me updated xx

 

Hi Cedric,

I can't offer any advice or experience on your girlfriends letter, but someone else may be able to... but I just wanted to say that it's lovely that you're here trying to find out more and understand/support your girlfriend. Whatever happens from what I gather from reading Jo's there are lots of ways fertitlity can be preserved if it is CC, if it's more CIN/CGIN I don't think anything should be affected.

I can only speak from my experience in relating to her emotions but she's probably terrified - anything with the C word in tends to make you panic and go into a bit of a spiral and in that midnset it's hard to be positive. You might have to be positive for both of you until she's been to the appoinment and knows what's going on. All you can do really is be there for her if she wants to talk (and be patient if it's the same what ifs over and over) and hug her when she's upset. 

I really hope everything is ok for you both and it's just some more changes and not CC x x x x