Hi everyone, I’m just hoping someone could give me an idea of what to expect after being told I’m CIN3?
The communication from my hospital has been very lacking/confusing! I got a letter after my colposcopy and biopsy stating CIN3 and that they’d referred me for a hysteroscopy (last November). Ive been sent an appointment letter with a consultant for April, but heard nothing about the hysteroscopy yet.
Do I need to chase this up or should I just wait until April to speak to the consultant? Is there any urgency after CIN3 diagnosis or is it more of a long term watch and wait kind of thing?
Thank you for reading and any help/experiences you can share.
I would give them a call and see why your being referred for a hysteroscopy instead of a LLETZ or atleast why they arnt removing the abnormalities first… i had CIN3 confirmed by a punch biopsy and my next step was a LLETZ (29 years old) then a 6 month follow up smear (clear)… they may want to investigate further as that is what a hysteroscopy is for, but with the appointment not being untill april… CIN3 is usually recommended to treat rather than watch and wait xx
Its me again😄
Thats excatly what i thought Re your last message as i have sat here all weekend going through my mind.
So am i right in thinking the following
Diagnosed
HPV high risk and low cell changes
So am I right in thinking this is roughly what happens below .
1…Coloscopy and biopsy if shows low grade and HPV then its a wait and see in 12 months
2…However if they see moderate or higher on the coloscopy but the biopsy shows only low changes they still see you in a years time as they take the results of the biopsy rather than the original smear and the colposcopy
3…If they see moderate or higher on the colposcopy and biopsy comes back as correct and same as the colposcopy moderate or high then they treat with taking the cells away either in an appointment with the results letter.
However some clinics do treat there and then but been told not always as you see in points one and two it would have been a procedure that didn’t need to be done as the cells are low at the moment and may even disappear
However some clinics do a see and treat on the dame day even if they have not had the biopsy back.
Am i right in thinking this is roughly how it goes
X
it all really comes down to what the colposcopist sees on the day on what happens i.e if they need to take a biopsy to confirm the grade first or treat it there and then… some do like that confirmation first but if they do want to perform it there and then they will state what grade they think it is and explain why they want to perform it
Just so you are aware… they do sometimes use the same method with low grade changes, if they can say without a doubt its CIN1 as they can usually tell what grade they are looking at (or they wouldnt be able to do the see and treat method lol) if they dont feel that a biopsy or treatment is necassary we are told there and then to have a 12 mon follow up smear… 99% of the time a biopsy is performed though xx
They normally leave it as it is, its not recommended to treat low grade changes unless theyve been there for a while… some have had treatment for CIN1 but i dont believe theyre in the UK xx
They cant no unfortunately, a negative HPV test can mean it was either dormant at that time or it hadnt been contracted yet its unharmful and goes undetectable when in its dormant state its when its active that it has the potential to cause harm… but medically they do assume that we contract it or atleast are exposed too it within our first year of sexual activity, one of the main reasons why the vaccines are given to school children before they “explore” xx
Hi! Sorry for the late reply, things moved very slowly for me so I was trying to keep myself distracted. @Tinkerbelle29 you’ve pretty much covered everything, thank you for your insight. I just thought I would update for anyone else reading in my situation…they did do a LLETZ treatment and I have a review appointment booked 6 months later to monitor. The hysteroscopy eventually happened too, but please please if anyone else is in my position do chase it up. I had to call many times to ultimately find out the referral had gone missing so nothing would have happened if I’d not badgered them. And the results come back all clear, so I am very pleased to have got that peace of mind. Thanks for the help, I was really scared when I posted this forum is wonderful!
Hi @Patty the all clear was just for the hysteroscopy, so it showed there was nothing going on deeper in my womb. I think they wanted to check this because I had high grade changes, I assume most people don’t need one. So I’m still officially CIN3 and HPV + I will update this thread after my review appointment in April. Hope that helps, I know very little about all this myself!
Sorry
So am i right in thinking even with low grade they still do a biopsy if so do u have any reasons why they do and not just do a recall for 6/12 months time to see if they have gone or stayed the same.
I thought they did a watch and wait for low grade as my friends daughter had low grade and has another smear 6 months time.
.
Thought they only biopsy for moderate to high.
I do know i think i have asked this before on here just cant get my head around all these do they or dont they Biopsy answers
Thnak you once againxx
They do usually take a biopsy when its low grade, but they dont always its usually done too confirm what the colposcopist has seen as a test result is always better than someones word even if it is educated lol or if theyre not entirely sure if it is a low grade change they will take biopsies to back up their assumptions
By the protocol its not necassary to biopsy low grade changes as they can usually tell what they are looking at but if there is something visible to biopsy they will biopsy it as it is more accurate at diagnosing the cells for what they are (inflammation or CIN) and grading them, so the colposcopist will make the decision based off what they see on the day and whether they want that confirmation first before they monitor us xx
Thank you once again
Noneoubt I will have another question today or even tomorrow.
Yes my friends daughter had low grade and HPV still had a biopsy hers was inflammation not CIN.
If my friends is inflammation do they discharge you.
If it is CIN.low grade do they see you in a years time…
I know i waffle and even ask the same question
Sorry just looking for answers and reassurance.
Xx
if the colposcopy finds anything we are usually seen within the year, usually by follow up smear this can be with our GPs or the colposcopy department (my CIN1 was followed up at my GP) im not sure why some have it at their GPs and some have it at colposcopy, but when its CIN1 or if the HPV caused changes of significance like they are beginning to change the follow up is to check our HPV status and the cell changes but with inflammation caused by yeast etc the follow up smear is to check the HPV status, as inflammation isnt of concern
your fine hun dont worry about it at all, thats what this forum is for xxx
How long does it take for the cells.to.change to CC after CIN 3…
I been on here for a friend but have questions too.
Inhad my smear in 2018 and therefore due this year as I am over 50 and they r every 5 years after 50.
I am concerned that if there were chnages to happen after my smear in 2018 how longs does and coul it take to turn into CC.
Xxxx
CIN3 isnt normally studied in actual studies, it would be greatly unethical for anyone to study it properly so its not permitted in that sense, they can only estimate based off the data they have available and gathered over the years from national screening registries
its typically thought progression from CIN to cancer typically takes upto 15 years with a range of 3 - 40 years but most will say 3-15 years with very rare exceptions, now that HPV is accepted as the cause of precancer and CC data does suggest the risk of HPV giving us cancer between screening times is very low and rare, as alot of countries now either cotest smears with the HPV test or they do HPV testing as primary they are starting to recommend smears be every 5 years for everyone… wales and other countries have already changed their screening from 3 years to every 5 years as a normal recall for those who are virus negative, monitoring stays the same when they are positive
you might find these helpful if you have a minute to read through them:
https://academic.oup.com/aje/article/178/7/1161/211254 - this is a journal article about the estimation of progression
https://en.wikipedia.org/wiki/Cervical_intraepithelial_neoplasia#Outcomes - note that CIS (cervical carcinoma in situ) isnt cancer despite its name and CC being linked to the term on the page, its just another term used for CIN3
its not a problem at all, if its something i can help with im more than happy too xx
