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Second LLETZ needed for high-grade CGIN.

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Man.on.the.moon
Second LLETZ needed for high-grade CGIN.

Have just received my appt for my second LLETZ procedure following the finding of CIN1 and high-grade CGIN. This has been going on for ages, with long waiting times due to covid (no-one's fault, of course, but quite anxiety-inducing all the same. My LLETZ was performed in early January; It will be May before I receive a second.) 

I'm quite nervous after reading up about high-grade CGIN, and am wondering if anyone can share their experiences with me. I've been wondering if this LLETZ is unable to remove all the CGIN, will they go down the route of hysterectomy? I'm 38 and have two children, and though I'd like another, the most important thing is that I'm healthy for my existing children, whatever that takes. 

Thanks. 

Mabel

Not myself but my daughter had a lletz in February for cgin and hpv high grade . Treatment was successful 1st time and confirmed in MDT she has another check up 6 months after . Cgin is less common but still treatable . Fingers crossed for you 

KultKoala

Hello again, 

I had my second lletz for high grade CGIN 16 days ago.  When I spoke to my consultant pre treatment she said that she would expect to get clear margins this time round and would be very dissapointed if she didn't.  The long waiting time is really unlikely to be an issue.  The development of cervical cancer is slow.  Mentally it's not nice to have it dragged out as such though, so make sure you are looking after yourself and reaching out when you need to.  My consultant actually told me she was more worried about what was going on in my head and heart than what was going on down there. 

What happens next if you still show unclear endocervical margins I guess has a lot to do with how much cervical length you have left and whether you want more children.  They won't suggest hysterectomy unless you state you want no more children and are happy to go that route.  I would imagine they may offer you further lletz/cone biopsy.  They can always put in a cervical stitch to strengthen the cervix in future pregnancies.  Also know that further down the line a trachelectomy could come before a hysterectomy.  Sending love xx

  • 12/12/20 Cervical Smear Test
  • 12/1/21 Cervical Smear Results CGIN
  • 26/1/21 Booked for Colposcopy
  • 25/1/21 Colposcopy appointment cancelled 
  • 27/1/21 Colposcopy LLETZ procedure for CGIN.  Size 12 loop 1cm depth.
  • 12/02/21High Grade CGIN confirmed.
  • 16/2/21 Lateral margins clear, endocervical margins unclear.  Further LLETZ to be scheduled.
  • Second LLETZ scheduled for 19/3/21
  • Second LLETZ procedure 19/3/21.  Size 12 loop.
  • 12/04/21 Clear Margins.  Recall for smear in colposcopy clinic in September. 
Man.on.the.moon

Thank you so much for that- It's really helpful to know that someone is in the same boat as me! I think it's the nature of waiting that is unsettling. But that's reassuring that your doctor is hopeful. I'm very nervous about the LLETZ- the anaesthetic didn't work last time, so I felt the first bit and was extremely ungraceful and sweary whilst I had been determined to maintain my decorum! 

Hope you're feeling ok after your LLETZ. x

Rebecca1965

God. I'm not suprised you were sweary 

 

Age 55

first HPV positive and abnormal smear test (borderline) January 2021. Definitely a new infection from the last 4 and a half years 

Colposcopy seemed low risk

Biopsy showed CIN2

I have been told verbally I will have LLETZ, though waiting for MDT on 7th April  Might be  about 2 weeks after that.

well 7th didnt happen-14th now 

 

Cj09

Hi there,

I am going through a similar experience to you.

I had my first lletz in January for Cin 3 and high grade Cgin.

The drs were not happy with the margins due to the Cgin being too close to the borders and now I have to have another procedure in a couple of weeks. They said there is a big possibility there will be clear margins this time and possibly  no residual abnormalities in this sample.

I'm scared that this time they may find cancer higher up in the cervix that may have been missed in the first biopsies and lletz.

I am also worried that it may lead to a hysterectomy.

Wishing you the best of luck with this next procedure and I hope your results come back with good clear margins!

 

 

Dreamland

Well although I'm sorry to hear you're all going through this, it comes as somewhat of a relief to hear all the anxieties I'm feeling are obviously totally normal! I'm just about to have my second lletz due to an unclear deep margin. I was planning for trying for our next baby this year but instead had severe dyskaryosis come up in a smear in November last year. I waited till February to have my lletz procedure. Unfortunately a tiny amount of cancer was found in the sample. I'm having the second lletz under general anaesthetic on Thursday. I keep thinking what if there is more cancer found? What if I don't get clear margins this time? Will I end up with a hysterectomy? My main concern is to be healthy for the children I have (as said above) but the idea that this takes away my chance of any further children is upsetting. Although I appreciate some women have it a lot worse. Anyway, I wish you all luck. It's a horrible process to go through but I do feel confident that the systems are thorough and we will all be ok in the end! Xx

 

 

 

Man.on.the.moon

Thanks so much to all that replied- this may feel silly, but it brings so much relief that somebody bloody gets it. Everyone is being kind, but people trying to be positive all the time makes me feel isolated, as though I'm not allowed to share my anxieties. I told my boyfriend when he said I'd be fine that I needed to be allowed to worry and share my worries and not feel like everyone was blocking me off with "think positive." I need to be able to explore all the "what ifs" in my mind before I can be positive. 

tilda123

Hi everyone! 

I'm going through the exactly same thing as you at the moment. I had my first LLETZ in March for CIN1 & CIN2, but turns out that the ectocervical and deep margins were not clear and I also have CGIN. Next week I will have my second LLETZ. It's reassuring that they're treating it so quickly, but I am so worried that if they don't get clear margins this time around the cycle will just go on. In my case the anesthetic failed ad well first time around so thetreatment was quite traumatizing.  I am yet to have any children, but we were planning to TTC this year with my husband. 

The staff at the hospital have been great when it comes to my anxiety around fertility. I asked if I could have a meeting with a consultant (this case it will be the head of gynecology) to discuss my anxiety prior the second treatment. I really don't want to delay having children longer than I have to, and probably will seriously discuss whether it would be possible to TTC before further treatment after this second round. Not sure how common this is, but I thought if the consultant reviews the case they can probably give the best overview. 

Hang on there everyone! Xx

 

 

Man.on.the.moon

Ah I'm sorry you're going through this Tilda. It's so difficult isn't it? The more I think about fertility, the more I think I want another child- but I know I'm really lucky that I have two children. 

 

I read somewhere (in the endless googling I've done undecided) about someone who wasn't told about the possibility of freezing eggs before treatment, so if you do end up needing treatment that may affect your fertility, you could ask about that. If you don't mind my asking, how old are you? (I've been surprised with the reaction of two of my friends- "well, at least you're not young enough to have more children." Do people really feel like this about women in their late 30s?!) 

 

tilda123

Hey Man.on.the.moon,

I am 28-years old. To be honest, my experience has been opposite - even my colposcopist kept saying how young I am and how much time I have left to have children. I understand where they're coming from, but I've always visioned myself having kids "young". I've felt like my concern for my fertility has been downplayed because of my age.

I will need to consider freezing my eggs if it comes to that, but at this point it's hard to think about. I will speak with the consultant next week and see what they say. Just need to see how the second LLETZ goes and if that eradicates the cells for little bit, then that buys as a bit of time at least. I know I am sounding desperate but it's hard to see light in the end of the tunnel at the moment... 😩 

 

KultKoala

Hello,  just thought I would update.  I have my histology back and after 2 lletz procedures I now have clear margins.  Just got to go back for a smear in colposcopy at 6 and 18 months and I can now go back to trying to conceive.  I hope this gives you both some hope and reassurance.  Xx

  • 12/12/20 Cervical Smear Test
  • 12/1/21 Cervical Smear Results CGIN
  • 26/1/21 Booked for Colposcopy
  • 25/1/21 Colposcopy appointment cancelled 
  • 27/1/21 Colposcopy LLETZ procedure for CGIN.  Size 12 loop 1cm depth.
  • 12/02/21High Grade CGIN confirmed.
  • 16/2/21 Lateral margins clear, endocervical margins unclear.  Further LLETZ to be scheduled.
  • Second LLETZ scheduled for 19/3/21
  • Second LLETZ procedure 19/3/21.  Size 12 loop.
  • 12/04/21 Clear Margins.  Recall for smear in colposcopy clinic in September. 
Dreamland

That's great news kultkoala!

Xx

 

 

 

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