Smear confusion, CIN 3, please please help. So scared.

[LegArmpits]

Please help, apologies if this is long.

I had a smear test, results August 2011 were abnormal. Was only mild changes so waited a year (my choice) then went to colposcopy in September 2012. Consultant couldn't see any area that needed biopsy so just took another smear. I've today received a letter saying abnormalities were present in smear and I would need treatment.

So I phoned and they were reassuring but have terrified me further. Apparently the new smear is CIN 3, so rather than doing a biopsy they will just treat me with LLETZ. I have to wait until the end of January for this as I can't make the end of December appointment.

I'm just terrified. I could cry. I'm level headed usually but due to a bad experience in my twenties, it's my one big fear and I just think I'm going to go to pieces.

Am 38 with three beautiful young children. No symptoms.
Please please hold my hand. Please.

[digerd]

I also had an abnormal smear, which they forgot to tell me until 18 months later, by then it had developed into carcinoma In Situ/ Displasia grade 4, as it was then called. I had a Cone Biopsy to remove the cancerous cells in the opening and biopsy further upwards to see how far it had spread. They took it all away, did not need a hysterectomy, as had not gone far. That was 30 years ago. Normally you should have had another smear in 6 months time, as often the cells return to normal as was the case with my daughter.

I was initially examined and was told the cervix rim was all black and had a biopsy, which determined the Carcinoma In Situ, and in 2 weeks was back in to hospital for the Cone Biopsy

What is CIN3 and LLETZ. ?

[LegArmpits]

Hi,
Thanks for reply.
CIN3 is high grade abnormality, and LLETZ is the treatment they do to remove.
Am googling like a lunatic, but what's the point really? It won't tell me anything until I go. I don't understand how it can look normal but return a CIN3 result. Also without a biopsy I am wondering how accurate this might or might not be.

Am also worried about the time scale, although thankfully I've been able to reschedule to end of December rather than January. It's still a long wait, three and a half months from smear to treatment. Or is this normal?

Would really appreciate if anyone else has an idea.
I really need to get a grip but I can't stop shaking.

[penguinplease]

Hi please don't worry. I had this back in 2003 when I was only 26, I didn't realise back then that CIN3 is the top end of the scale before it gets to cancerous.

The good thing is you are still at PRE cancerous.. you must try to remember that.

Also the next good thing is getting it treated. I had LLETZ 3 months after mine was discovered and I had it under general as I was really traumatised to be having this again (I had previously had 4 colposcopy/biopsy treatments that I found really stressful).
I was in and out very quickly even with having the general.

I now have yearly smear tests and touch wood all mine have been clear since having this removed. The only bad side of it for me was that for my pregnancies I had to have a stitch put in my cervix as it wasn't strong or long enough to hold a baby in after having had the CIN3 removal.

You will be fine. Step away from google and think positive.

I can't think of anything else to say but don't worry & if you have any questions that I can help with let me know.

[FoxyRevenger]

Leg I had a colposcopy and biopsy 6 years ago for CIN3 cells.

Can I ask exactly what it is you're worrying about? Are you worried you have cancerous cells present?

As I understand it you don't; you have cells that have become abnormal and would, at some point in the future, without treatment, become cancerous, but you're not in that situation.

You're going to get it treated and you'll be fine. Before the colposcopy I was petrified but it was fine, really not sore at all, although I was very crampy the rest of the day.

And every smear has been clear since.

[LegArmpits]

God thank you so much for your replies. Just talking about it makes me feel better. I'm a sod for ignoring it all, which is what I did after the first mild abnormal.

The thing that worries me is that nothing abnormal was seen at colposcopy so no biopsy was taken, just a repeat smear. So given that the smear is just 'screening' they aren't going to know anything until the results of LLETZ comes back. I think I'm going to have a nervous breakdown with all the waiting. I sound like a right self indulgent cow, because if anything this site has taught me is how there are ladies who are far, far worse off than me. But I'm just so dismayed by it. My DH is fantastic and a wonderful support, but I hate hate hate it. I hate the worry for him.

Thanks for listening.

[penguinplease]

Well thinks may have changed since I had mine but I never got any results of the LLETZ, I just had the op and yearly smears..

You'll be fine, when is your appointment?

[LegArmpits]

It's the 27th December Penguin, so stupidly near Christmas. They said I could phone daily for a cancellation but its not so easy to organise childcare at short notice.

[penguinplease]

No I understand the childcare thing but the important thing to remember is that this is PRE anything sinister.

Don't let it overshadow your Christmas.. easier said than done but really if they felt it was emergency they would have you in much sooner.

[midori1999]

I've recently had lletz done twice after severe abnormalities (cin 3) were found on my smear. In fact, I posted on here about it. It's now 5 weeks since my second treatment, which was 5 weeks after my first.

I'm not going to lie. A smear can't tell for sure what it is, only a biopsy can and if they are doing lletz right away then they will just biopsy whatever they remove. It's extremely unlikely to be cancerous ( and might not even be as 'bad' as CIN 3 once they biopsy) particularly if you've kept up regular smears and have no symptoms.

The lletz itself isn't too bad. I went by myself to the first one and drove myself as my husband was away. It doesn't hurt, although the anaesthetic makes you feel weird as it contains adrenaline. The bleeding after is period like with some mild to moderate cramping. I think it's common to feel tearful and exhausted afterwards, so do get some help if you can with children.

[midori1999]

In my area results after lletz take 4-6 weeks, but mine were sooner. 3 weeks and repeat appointment the first time and one week and got results by phone then followed up in post the second time.

It's also now common to do a follow up smear and test for HPV 6 months after the lletz and if no HPV or abnormalities go back o 3 yearly smears. If HPV but no abnormalities then its yearly smears. Obviously if there are further abnormalities (unusual, my consultant said 1 in 10 chance) then you'd need a repeat colposcopy then.

[LegArmpits]

Yes, this is another thing that I find (for want of a better word) interesting, is the HPV testing. I've read masses of stuff on it over the last year and its very confusing. I asked the consultant at colposcopy if they would test for HPV but apparently not.

You're right re not knowing the exact outcome until biopsy/LLETZ and this is the thing that is haunting me, but of course as you say, equally it may be 'better' than CIN3. I know that the odds are very slim and I'm sure things will be ok, but it doesn't stop me tormenting myself. The fact that they were willing to not see me until end of January is also strangely reassuring, but it just seems a long wait. I'd really come around to thinking that the results were taking forever due to everything being ok, so it's come as a bit of a bolt from the blue, stupidly.

The other thing that is bothering me (at risk of outing myself!) is I find it impossible to tell anyone other than my DH about it. It's like a brick wall. I initially had to cancel the December appt as my mother, who's in her 60s had a hernia operation scheduled that day and she's the sole carer/guardian of a little girl who she'd fostered so I was helping her with childcare. But because she's twice widowed and therefore alone, I can't bring myself to tell her about this as she will also worry so much. I'm sure I will have to at some point but it's adding to the upset. I have fantastic friends too but again, I just can't bring myself to say anything. So ridiculous, but I hate being an imposition to anyone. That sounds horribly martyr-ish! But I desperately don't mean it to. I just want to bury my head.

[ihearttc]

I had CIN 3 when I was 27 (8 years ago now). I had a regular smear and had no symptoms or problems at all either so I can totally relate to how you feel being told that.

I had a Colposcopy and Loop Diathermy (which I presume is LLETZ) and then had to have 6 monthly smear tests done and then yearly ones for 3 years and have now gone back to the normal smears (am due one now so need to make an appointment).

I didn't tell my parents either so I really do know where you are coming from. The way it worked as well my yearly smear tests always ended up being just before christmas so I never enjoyed christmas that much cause was always thinking "what if..." but 8 years and 2 children down the line I have had no problems touch wood.

[melnich]

Hi, I don't often post here but thought I would as this is exactly what happened to me about 4 years ago. One more story of a happy outcome will hopefully help you!
I had CIN3 cells found at a routine smear (after I had been putting off going for a couple of years, silly me). I had the LLETZ procedure done a couple of months later, like you around Christmas time. I was so naive about the whole thing I even took my 2 yr-old with me, and luckily some lovely nurses looked after him for me while I was on the couch. The procedure was quite uncomfortable, but not too bad. I had to come back some months later for a check-up, but in the meantime they checked the tissue they had removed and all was fine. I now have to have smears every year until 10 years has passed.
As other respondents have said, CIN3 does not mean you have cancer, just that if left untreated it might go on to become cancerous. So all that's going to happen is they will remove the CIN3 cells, check they've got them all and that's that, life will continue as normal!
Please try not to worry, and don't let it spoil your Christmas.

[LegArmpits]

Thank you so much for your stories and reassurance. It really does make me feel a little better and it's SO SO good to talk. I'm really angry with myself for potentially letting it ruin our Christmas too, so I need to find a way of dealing with this I think.
I keep thinking it would be worth phoning for a possible cancellation, but December is always a bit bonkers with school plays and stuff, and also the worry of the results would still be there, so I think I'll wait it out. Also makes it easier as the kids and DH are off then anyway.
Bloody hell. What a shitty Monday!

[midori1999]

I would personally need to phone. In fact, I did phone and my appointment for two weeks time was brought forward to that afternoon. Luckily I managed to get child care.

One other thing is that the person doing the colposcopy can get a good idea of whether its very serious by looking it seems.

I know it's easier said than done, but try not to worry, you're being seen now.

[LegArmpits]

Yes, I'm going to speak properly with DH about this, as I'm unsure. I just want it over with.

midori this is what confuses me. I thought the whole idea of Colposcopy was so they could get a good look at it. And it all looked ok...

[spiderlight]

Copying this from another thread:

I had widepsread severe dyskaryosis (CIN III) four years ago and I am fine. I had to have a colposcopy (much like a long smear test where you get to see your own cervix on a screen), a couple of biopsies that I barely felt, and subsequently two loop excisions six months or so apart (most people ony need one - trust me to be awkward!), but as they said to me at the time, even at my severe level it would have taken another ten years for the abnormal cells to turn into cancer. It's horribly scary but you're in the system now and they can sort it. It's those who don't go for smears and don't have it picked up at this stage who end up with cervical cancer. All my treatment was done with the utmost sensitivity by absolutely lovely, kind, gentle medical staff, and while it wasn't exactly what you'd choose as an afternoon out, there was very little pain or discomfort involved. I'm still on annual smears but my last three have been clear and I think after next year I'll be back to normal three-yearly.

It's horrible though, especailly teh waiting, so you have my massive, massive sympathy

[digerd]

30 years ago, I had a general for the biopsy and another general for the conebiopsy. Think they've changed the names, as I was also told I would need a stitch if I got pregnant which would have to be taken out before giving birth.
I remember laughing after the op when a nurse came to change my bandage, as I said " what bandage?", then she proceeded to take out a seemingly never ending length of bandage out between my legs just like a magicians hat trick. !!
I was so surprised as hadn't felt anything inside me.
I had no pain either.

They were so worried about mine then, they told me I would probably need a hysterectomy - which I didn't.

[LegArmpits]

It must be said, Eastenders and whiskey helped for half hour then.

[BelaLug0si]

Hullo
If the colposcopist was more worried they would somehow fit you in earlier usually.
Can I suggest you read information on the colposcopy website here and bsccp.org/index.asp?PageID=30.
Colposcopy does give a good look at the cervix, there are still limits (up the endocervical canal) which is why they've taken a cytology sample that came back showing severe dyskaryosis. At this point LLETZ is the treatment offered. The other posters have eloquently put how they found it. All I can add is that it is bearable, the recovery is fairly swift but you're likely to feel out of sorts for at least a week.
It's a very small % of severe dyskaryosis that turn out to be cancer at the time of the LLETZ being examined, and even if they are cancer, the vast majority of these are very early and do not need any further treatment.
Another place for support is Jo's trust. It's for women and their families dealing with pre-cancer and cancer of the cervix.

Hope you get on ok and get a cancellation.

[LegArmpits]

Hi Bela, thanks. Can I ask, if the cells are further up would this make it more difficult to treat? Am in a right old state.

[BelaLug0si]

Hi
The cells being further up won't necessarily make them more difficult to treat, it could mean a slightly larger LLETZ. That sounds alarming but is actually only millimetres different in reality. It does depend very much on your individual situation so it's something to discuss with the colposcopist about treatment - I can give only examples and give general idea of how things work.

[digerd]

OP

Just looked it up on google, and my CONEBIOPSY 20 years ago is now called LLETZ, so is exactly what I had done. Although we stayed in hospital for 8 days then as the anaesthetics were much more unpleasant in those days.
It said you will bleed for about 3- 4 weeks while it is healing - too long ago for me to remember, but varys depending on how far up the cervix they have to go to eradicate all the abnormal CIN3 cells.

Do not worry, I remember only worrying about having to have a Hysterectomy, which was mentioned to me as possible.

But I did have a previous biopsy on the detection of my cervix looking black, to determine the stage, and in those days it was with a GA. I had the 2 ops in 2 weeks. But was not as bad as they thought, as did not need a hysterectomy.

[BelaLug0si]

Hi digerd
A cone biopsy is slightly different to a LLETZ; with a cone the tissue is removed using a scalpel instead of a loop and tends to be more tissue taken than a LLETZ. Cone is less often used now because the LLETZ was developed so that's taken over as the main method of treatment.

[digerd]

Thanks Bela
I thought in 20 years procedures would have changed for the better.
Apparently, I have an awful scar that healed wonky - german doc looking down his nose at it 3 years later. I have not been able to find why my cervix was all black when called back to the clinic. After the first biopsy, I had a letter stating that the whole of the rim was full of displasia grade 4, and that a bed had been booked for me in the next few days for the cone biopsy, to have it removed and take further biopsies to see how far it had progressed. It was also called Carcinoma In Situ, on my records at GPs.