High grade CGIN?

Cervical screening results
1

Hi all

Just wondered whether anybody has had a similar experience to me and could maybe put my mind at rest. 

My first ever smear test showed CIN3. I was treated with LLETZ two weeks later. The results of my biopsy came back within 11 days and I received a phone call asking me to go in and see the consultant. It turns out that they found 'focally high grade' CGIN present as well as CIN3 (not sure whether they successfully removed this?) and want to discuss my treatment options at their MDT meeting early next month. I'm only 24 and would like to have a family in the future. I've been pretty level headed about everything so far but can't deny that I'm now really starting to worry.

Apparently this is 'more serious and aggressive' than CIN3 and they would usually offer a hysterectomy to women who have completed their family, and are concerned about removing more of my cervix because of my desire to have children.

Has anybody else experienced this? What treatment did you receive and was it effective? 

Thanks

S x

2

Hi there,

I haven't posted before as have mainly just used the forum for information etc, but your post struck a chord with me as am in the same situation. 

To give you the short version: Earlier this year my routine smear came back with abnormalities (first time there was something abnormal in 3/4 smear tests), 

I was referred for a colposcopy - where the consultant explained that the abnormality was "glandular" which could mean one of a number of things, most of them not cancer or even pre-cancer and he would have a look. He noticed a very slight vessel out of line ver close to the opening of the cervix. Took a biopsy and it came back 2 weeks later as CIN3. When I went in to get the LLETZ treatment, the consultant (a different one) said that she would remove about a cm as it seemed likely that the lesion spotted went further up the cervical canal, given the fact that my smear registered a glandular (and not squameous) abnormality. A few weeks ago I was advised by the clinic that the biopsy taken from the LLETZ had returned a diagnosis CGIN and CIN3. I was pretty unsurprised by this, although was surprised that around 16mm depth had been removed and that the lap report stated that it seemed almost certain that the whole lesion had been removed, but that it wasn't confirmed beyond reasonable doubt. The clinic explained that there were no cancerous cells found, but that as these are precancerous and COULD progress to cancer, they like to be sure etc etc. The consultant had checked the file and my case would be referred to an MDT meeting (not for another month or so). I have to say that she pointed out that even in cases where the margins are 100 per cent clear and they are sure beyond all reasonable doubt, glandular cases are ALWAYS referred (since 2013 I think) to an MDT meeting.... this is now the gold standard in Britain and Ireland...

In terms of what CGIN means, my understanding is not so much that it is more agressive. Although it is possible that I've not been told this! But rather that it is harder for medical staff to actually see what is going on because the cells affected are inside the cervical canal. Because CIN3 etc affects the cells outside, on the face of the cervix, a bit of solution and white marks appear and everything is visible in the microscope. The same is not true with CGIN. The colposcopy nurse explained to me that in the majority of cases CGIN emerges in the Transformation Zone (the bit close to the opening of the cervix) and in my case it is an extension of the CIN3 lesion (indicated by the tiny vessel change) on the outside of the cervix.

Therefore its not a case of aggressiveness/quicker progression etc (again, this is based on my own research and discussion etc with medical staff on my case) but that they have to be sure they have removed it all. I was told that they might do further LLETZ for me to remove any remaining cells, or that they will leave it 3 months or so and then do a test again, one which includes the brush going into the cervix to check for any remaining abnormalities.  The cases that tend to be more concerning (and this was explicitly stated to me two or three times by my doctor and nurse) are the ones where smear tests return glandular abnormality results but repeated colposcopy, brushes and lletz show NOTHING at all abnormal. in these cases, it may mean that the cells are either very high up the cervix or originate from elsewhere (more concerning particularly for women over 50 I believe)... So if they have found something high grade on colposcopy and can treat it, this is good news (although it never really feels like it!)

As for a hysterectomy etc, I was told that sometimes they do this if the abnormality is actually cancer, if CIN or CGIN is recurrent, if the woman is older and wants to be on the safe side or where people have had previous gyno problems... In cases of first time abnormalities in particular, especially in young women, many consultants will choose to monitor carefully and keep an eye on any potential pregnancies. I've also not had children, so was worried about this (and to be honest I still am, especially if the MDT meeting decide that I need further treatment!) but I also know that even when women have had cancer in this area or had the cervix removed because of this, pregancy is possible, and medical teams are careful to monitor women in this position.

I hope everything goes well and do try not to worry. I've found it easier in a way since getting the LLETZ results because although I was told it was exremely unlikely that I had cancer, it is always possible that the LLETZ will show something like that and I guess its a worst case scenario. Now I know that my condition is precancerous and is most likely removed, I feel fortunate in many ways that routine smears can prevent the development of invasive disease, but also feel that I can wait a bit more patiently for outcome of MDT meeting.

Take care!

 

3

Hi Louise

Thank you so much for your response - you have no idea how much you've put my mind at rest!

It sounds like you've had a much better explanation of the situation you're in than I have. I don't even know if the LLETZ successfully removed the CIN3 cells. I had my colposcopy and LLETZ at the same time and the letter I received back basically confirmed that I have CIN3 (which my smear had showed anyway) and now CGIN, so I have no idea whether they even removed the CIN3. 

I think I probably should have asked more questions at the time but to be honest I was just so relieved when she said that they hadn't found any cancerous cells that all common sense went out the window! I guess I'm just worried in case, even if they remove the cells, they keep reoccurring and I keep needing LLETZ and end up with not much of a cervix left. Very glass half empty, I know, but I can't help but think the worst! 

4

No worries at all, and hope it was helpful - I know every situation is quite different, but it's tough with the glandular type abnormality because they are less common, so it's quite alarming when you scour the internet only to find everyone talking about CIN and not CGIN. There are quite a few people who have had both CIN3 and CGIN (you can use the search tool to find out about them) and many have experiences with good outcomes. It's hard not to worry.... 

I've found my local hospital really good at explaining things, but I think this varies from trust to trust. What I did do after I was told that i might need more treatment was finish the phone call, hang up and then let the shock wear off (because I was relieved about it not being worse, but also worried about the implications of more treatment), before calling the next day and asking for more details. I'd definitely recommend doing that because they were really informative and helful and I felt like I had full details. I think the issue is that they are dealing with a wide variety of women, some of whom dont have questions, some of whom need to know everything etc. I am definitely keen to know as much as possible, so have found the minimum details insufficient and been quite persistent in asking things that I feel I need clarified.

I did ask her about the implications of repeat LLETZ and she said that some people have at least 2, sometimes 3 or 4 rounds to get rid of abnormal cells! She said that it does depend on how long the cervix is so said that once they go to deeper levels, they tend to measure the cervix as some people have a long cervix that can take a few cms, others can't. I certainly am concerned that with them already having removed 1.6cm that if they decide to do more that I'll have not much cervix left! But, I guess the most important thing is to wait for the outcome of MDT meetings (which are very routine, particularly for CGIN) and see what the situation is. Do you know when you will hear something? 

 

5

p.s, I'm guessing they would have told you if the CIN3 hadn't been removed, particularly as they usually have no trouble seeing it on colpscopy. I'd say that the reason they are calling the meeting is the CGIN aspect. It's possible that the CGIN was also removed successfully but the case is being discussed as routine, or that repeat treatment is possible. If you have a wait until the meeting, you could ring your clinic and just ask them about the removal and what the poss outcomes of the meeting are. 

6

Hi Louise

Yes, I totally understand when you say you had to let the shock wear off first. I did the same thing, but she said she would send a letter confirming our conversation so just figured I would wait until I received it to see if it already covered some of the questions I had. Unfortunately it was really vague which is why I'm now full of questions. I might give her a call tomorrow, I'm sure they're used to it!

My letter says that the MDT meeting will be held early next month and that a follow up appointment will be needed regardless of the outcome. To be fair to my local hospital, they have been pretty quick with getting things done, it was two weeks from my smear to colposcopy and LLETZ, then just 11 days for my results to come back. 

Do you have any idea when your MDT meeting is taking place? 

7

Hi there, 

That makes sense, I guess, the further treatment whatever the outcome, particularly if they were going in to remove CIN3 and found CGIN (not necessarily expecting to). i have to say that even if they had told you that the CGIN was definitely removed and no more treatment likely, you would still have your case discussed at MDT meeting. It does sound like they've been very quick too, which is good. Calling is always helpful I find, just to ask a few more questions. With CGIN although they want to monitor it, they don't like to overtreat, so they are cautious about how much to remove for biopsy etc. This then dictates treatment (although it's usually either LLETZ or a cold knife biopsy) rather than anything else.

My Lletz results took nearly 6 weeks and I was told in late Sept that the next MDT meeting wasn't until mid Nov. So I've had qutie a wait! It has got easier though and they were helpful with questions. The outcome of the meeting will either be more treatment (she said another round of LLETZ) or wait and check in three months or so. I am a little concerned about the implications of more LLETZ, but I'm also aware that there is nothing I can do about it until they tell me the outcome of the meeting! Will let you know.

Do let me know how your meeting or phonecall goes :-)

8

Thanks Louise.

Let me know what the outcome of the MDT meeting is. Take care until then :)

S x

9

Hi both,

I found this discussion very useful, thank you for sharing. It seems I may be one of the tricky cases Louise has mentioned where the smear finds severe abnormalities, but absolutely nothing is found with biopsies (no cancerous and not pre-cancerous cells). During my last appointment with the doc, she said my abnormalities may be glandular, and this may explain why biopsies haven't shown anything in the first place. I understand CGIN appears more difficult to treat and recurrent treatment is often the case given insufficient tissue (probably mostly in depth) has been taken out? I'm scheduled for a LLETZ in a few weeks time (although nothing has been found via the biopsies) and I am seriously hoping that whatever is there will be completely removed. Have you ladies talked to your docs about recurrent LLETZ treatment? As far as I'm aware, a first LLETZ that does not cut out a lot (<1cm) doesn't carry a lot of risks, but anything >1.1cm may potentially do and so do recurrent treatments (>1). How are you dealing with the possibility of pregnancy problems? Sorry if I am asking too many questions but it seems you're well informed and as you are aware, the NHS does not like to provide too much information to us...

Thanks again and all the best of luck with your treatments and results!! x

10

Hi there

So your smear showed CGIN but the biopsy showed nothing? Have you had a colposcopy? 

My situation was different in that CGIN wasn't discovered until the biopsy.

I haven't yet had an opportunity to speak to my consultant about the effects of repeated LLETZ on pregnancy. What I do know is that she said she didn't want to 'keep taking chunks' out of my cervix if she could help it I guess because she knows I want children in the future. I think I'm particularly worried about the effects it could have on my fertility as I also suffer from PCOS which can have a negative impact on fertility. 

Hopefully the LLETZ will remove all of your abnormal cells first time round. Do you have long to wait for it? 

S x

 

 

11

Hi ladies, I also don't tend to post often here just usually use for information but this also struck a cord with me. I am one of the ones who has abnormal smears with no visible abnormalities so I am also concerned about CGIN that may not have been picked up as yet. My smears only show CIN but the colposcopies are not showing anything up. I've have been under general anaesthetic (mainly due to a tilted cervix which makes a difficult for them to have a good look around) and I have had 2 coloscopy and still nothing found. At my last appointment they told me that my cervix was very short before lletz  treatment (in 2011) and so my cervix is now flush with my vaginally wall which means that further lletz will be difficult. I am currently awaiting result of the MDT meeting in November and very worried about what happens next! 33 with no children also makes the waiting even harder, not knowing whether the next decision will possible add further complications in the future

It so nice having others in similar situations and it helps to know that people on this site are so supportive 

12

Dear both,

thank you for your responses. My initial smear showed high grade dyskariosis, which turned out to be moderate, but has since been upgraded to severe dyskariosis, suggesting possible CIN3. During the colposcopy, my doctor showed me some abnormal cells - in comparison to what I saw on the Internet they were somewhat moderate, suggesting potential CIN2. The two biopsies that were taken did not show anything (no CIN or CGIN), but an HPV infection was discovered. I have since had a private smear done (for the bargain price of 150 pounds) and am still waiting to hear back from the doc about the results. As you can imagine, I do not want to be overtreated, especially as at the age of 31, I haven't got children yet and have had a previous miscarriage.

 

Soph, as far as I'm aware, LLETZ does not have a negative impact on fertility. However, if you have to have more than one LLETZ and they have to cut more of the tissue out, the risks could be in preterm delivery and a weakened cervix.

Dizzy, your case is also unusual in that the colposcopies and biopsies do not show anything. In my case I also find that very surprising, particularly because the biopsies are meant to be the clear indicator of whether (pre)cancerous cells are present, with the smears not being particularly sensitive and specific (often showing problems when there aren't, and not specifically identifying where the problems may be, ie CIN or other ladies' problems).

I am very curious to hear how everything turns out for both of you and I will keep you informed about the results of this second smear. I've got a LLETZ appointment on Nov 26 and hopefully can get some answers from the docs involved prior to that...

All the best x

13

Hi everyone, sorry for slight delay! Thanks for all your responses.

 

I'm sorry that you are all going through this kind of thing too, but to Anne and Dizzydee, it does sound like you are in the best possible hands and they are being very thorough. When I went to the colposcopy after my smear detected a glandular abnormality (there was nothing at all about CIN and tbh, the part of the lesion that is grade CIN3 was so tiny no white areas showed up in colposcopy), the consultant told me that sometimes smears show an abnormality, but nothing is found in colposcopy or LLETZ and they tend to keep investigating until they find it. So they are thorough - he said its possible that the original smear was wrong, but they investigate as much as possible and if they discharge you with no further treatment, they will ask you back in 3 or 6 months and do another test. So do try not to worry. I'm confident that if there is something there and you're on the radar, they will find it!!

I am worried about the implications of repeat treatment, particularly as the depth (1.6cm) taken in my initial LLETZ was fairly significant, width was v small. However, the nurse explained on the phone that they do think they have removed the lesion, but want to be doubly sure and the MDT meeting would happen anyway because of the glandular abnormality. She said that repeat LLETZ are quite conservative, and that there are minor risks (which I was explained already). I'm optimistic/hopeful that I won't need more treatment now, but if I do, I will obviously have some concerns. The nurse did say that the cervix tissue regenerates and heals and that is why they normally wait 8 weeks minimum between LLETZ treatments, but also meets that LLETZ can be repeated... She did say that if LLETZ is repeated a number of times to further depth, they do take into account cervix length and ensure that your cervix can take repeat excisions...

Soph, did you get anything out of your nurse when you rang?

Good luck everyon!

 

14

Thanks Louise and anne, that does put my mind at rest. You are right Louise  they are being very thorough with me and that gives me confidence but still worried it's higher up and they have said the same, they will keep lookingand testing  til they find it. Anne good luck for your Lletz on 26th, I'll be thinking of you. For Louise and sophie I really hope the outcome of your MDT comes round quickly. The waiting is always the worse part, ice done so much of it in the last 12months, I've surprised myself how much patience I have!keep in touch ladies and stay strong! X

15

Hi there, just wondering if anyone had any news yet? Lou

16

Hey Louise

No news yet for me unfortunately. 

How about you? 

S x

17

Hi there, nothing at all either but I have been told that the MDT meeting is this week and I will get a phonecall then.... Will update when I do hear something! Fingers crossed it all works out well for all of us x

18

I rang Friday morning last week to find out date of MDT, it's a week today, 17th November. Last time they downgraded my results and didn't bother telling me til I started making a fuss!! Hopefully this time I will told what they have decided, instead of feeling like the last to know!! Good luck to you all xx 

 

19

How annoying! I know that most of the clinics are very busy, but you really wish that they would let you know.... I hope you get a reassuring outcome from your MDT meeting. Although I was a bit alarmed when they told me it would go to a meeting, I was relieved that my case is being examined thoroughly!

 

Good luck :-)

20

Hi all

Just wanted to give a quick update.

Received a (rather vague) letter from my consultant today, saying that basically they want to see me again in February for another colposcopy, smear, and biopsy (no mention of LLETZ).

I'm a little confused, to be honest, and am going to give her a call tomorrow to check that they removed all the cells in the first place.

S x