Mistake made with Loop Biopsy results - have now been told they found CGIN as well as CIN3 - scared!

Hi there Smile

Just wondered if anybody has had a similar experience to me, or could put my mind at rest. 

I'll try my best to keep this short! Wink So I had my first ever smear (aged 24.5) in early January this year.   As it came back as borderline changes, I had to wait 6 weeks for my colposcopy appointment - I was then given very minimal information at the appointment and told to just wait for the punch biopsy results. After these results came back as CIN3, I was then booked in for a Loop Biopsy. I got a much better doctor this time, who was convinced that she got all the CIN3, and told me I had nothing to worry about. I phoned up 3 weeks later for my results, as I was just so anxious checking the post every day (I'm sure a lot of you know how it feels! Frown ...and I spoke to the receptionist who told me the CIN3 was all removed! I've honestly never felt so relieved, and I made sure I paid off the rest of my holiday that same week lol. The receptionist told me I would receive my letter within the next few days confirming this. 

After still not receiving a results letter two weeks later (5 weeks after my Loop Biopsy,) I decided to call again - I felt bad for ringing but I guess I just wanted to have a proper nights sleep hehe!

Well I spoke to a nurse, who was confused about why I had been given 'clear' results - she said that my results had only just came back a few days ago, and that I have CGIN with unclear margins, as well as the CIN3 they already knew about. I've never felt so gutted, I knew nothing about having CGIN. She told me that I would have to wait for the next meeting they had to discuss my results, as I may have to go back for another Loop biopsy soon to remove the rest of the CGIN. I then queried why I had initially been told everything was clear when it wasn't - to which she said she wasn't sure, and apologised on the receptionist's behalf. (She said it was possible the receptionist got confused and looked at my punch biopsy results). She then said she would call me back 'as it was possible my results had already been discussed in the previous meeting' and she herself might have made a mistake. 

I THEN  had a call from the nurse to tell me that they had made another mistake, and that she had told me the wrong results (she had got confused when reading them)! She said that I did in fact have CGIN (as well as CIN3) but that I had all clear margins (including clear CGIN margins). She said that the follow up for CIN3 removal is usually a repeat smear in 6 months - however because I also had CGIN, I would need to have a colposcopy in 6 months where they would do a 'test for cure' - I think that's what it's called. She also said my results showed 'no invasion.'

So basically I'm now being told that I had both CIN3 and CGIN, but they've both been removed with clear margins. 

Sorry if I've had a bit of a moan on this post, I know there are women going through a lot worse and feel terrible for complaining about this. I'm just wondering whether anyone else has been through this? And whether CGIN is a lot more serious than CIN3 - I heard it progresses to cancer faster than CIN3 (though I should probably stay off Google lol and I'm not sure whether that's true or not).

I guess I just want to know whether or not these are good results - I don't know whether I should be happy or sad lol? My partner is now very skepticle what to believe, as I've now been given incorrect results twice - he says just to wait for the letter and don't take the nurse's word for it that my CGIN margins are now clear (but the waiting is soo hard lol, especially after 5 weeks post LLETZ!)

Does CGIN progress to cancer faster, or have a higher chance of returning? I'm very worried I won't be able to have children. 

Anyway thanks for taking the time to read my post, I appreciate it. 

Best wishes to you all Smile Sarah

Hi 

I had cgin nearly 5 years ago. It's was low grade. Did they say what yours was low or high grade?

I had one Lletz with clear margins and 6 monthly smears and colposcopy.  Touch wood all OK.  I'm due another check up July and always start to worry it will be back. 

Cgin is rarer and they say harder to keep an eye on as it'd further up.  They should always use a double smear from now on as you've had cgin. One of the brushes goes further up the canal.

Hope this helps

Natalie

Hi Natalie

 

Thanks for your reply - I'm so pleased to hear that it hasn't came back in your case, but I guess the worry doesn't go away! Did they tell you the length of your clear margins when you got your results? I'm hoping they give me as much information as possible lol. I did read somewhere that CGIN only has a 15% chance or recurring (just slightly higher than CIN), so I'm just trying to stay positive. The nurse didn't mention LG or HG - just that they found CIN3 and CGIN. I'm still waiting for my letter, it will have been 6 weeks since my LLETZ this Wednesday. I really hope your repeat smear goes well in July - I'm sure all will be fine. It's such a relief to hear a positive CGIN story Smile