I am hoping someone can give me a bit of advice or knowlege about my smear result. I’ve tried phoning the clinic and the head nurse is so sturn that she just says - we do not use CIN grades here, you have a severe result and we will just find out on Wednesday the 20th what exactly is going on and you will be offered treatment there and then. She shows no compassion as i wept uncontrolable on the phone :’( I am beside myself, i have 3 girls and i’d hate to leave this world knowing my girls wont have their Mummy, it breaks my heart.
What i’d like to know is how curable this is or will this fast growning cells turn to cancer soon? Will i be forever in and out of hospital for years with these worrying tests?
She said i ‘may’ have HPV but they haven’t tested for it. So i guess what she’s trying to say is that most people with severe changes have HPV. So i guess i’m doomed… I’ve been with the same man for 12 years.
I keep reading stories about people that have had severe or CIN3 and ended up getting cancer, i’m so so scared and don’t know how i’m going to last another week with my worry.
Please can someone help so that i can prepare myself for the worst situation.
2011 Aug - Borderline
2012 Feb - Borderline changes
2012 May - Clinic for Biopsy which was ‘nothing to worry about’ but come back for smear 6 months later
2013 Jan/Feb - Smear taken and results back saying changes - phoned up clinic and she said they are severe, will be offered lletz loop treatment if they find anything at the appointment on the 20th of March 2013 - appointment was 3 weeks from my letter arriving with the changes result.
I also got a letter stating I have sever changes, this came from biopsy results at my colposcopy. They went in to book me in for further assessment/treatment 4 weeks later! I wasn’t impressed at how long it was going to take but when I phoned she said that if it was urgent they would have booked me in straight away so I think the fact that your appt is not considered urgent is positive for you.
When I went for my reassessment appt which sounds similar to what you’re going for 20th march, she simply confirmed she had looked at the biopsy and it was in fact cin3 then said she would do the lletz same day, took 20 mins and I was out of there! Make sure you ask the consultant any questions you have as i didn’t and wished I had! Googling is not good afterwards!
Any questions don’t hesitate to ask!! Xxxx
Thanks so much for your reply, it's greatly appreciated and I feel much better that someone at least knows what i'm going through, it is very scary.
Yes i try and stay away from googling but i've found that even if i go to the area on here with 'just diagnosed' it makes me panic as i read what stages everyone was at and go to bits when i see someone with CIN3 to on to have cancer.
Does the nurse doing the coloscopy actually see if the cells are cin3? i thought this had to go for tests first before deciding. They did say they would treat the same day if anything was untowards. I'm hoping they do as i just want whatever is there out.. and fast.
Your cells went from CIN1 to 3 pretty fast too, did they give a reason why. Do you know which kind of questions i should ask. My Mum is a nurse so she's coming with me.
I recently had a routine smear and it came back borderline with HPV high-risk. They sent me to colposcopy whereby the doctor took a biopsy and told me to wait for my results. That was on 1st march and I've heard nothing.
In the meantime, I've had a letter that she sent to my gp saying that she did the biopsy because she'd seen 'what looked like high-grade disease' and this wasn't explained any further....
I'm going insane with Worry. I also have two children, my son is only 6 months old and I literally cannot eat or sleep or anything.
I've previously had 3 smears, all normal and so this has all come as a real shock.
This week I've been having all sorts of pains and today I've started spotting but everyone is telling me not to worry and it could be because I'm so stressed out but either way I just thought pod post to say that I know how u feel and it's good easy all this waiting...
Ive read all the good and bad stories on the Internet and I just don't know what to think anymore!
Ive so many questions but I really don't know where to turn.
Fingers crossed :/
yes i agree, very scary and makes you re-evaluate so many aspects of your life...the waiting around is awful!
it sounds like we do the same thing, switch between googling and 'just diagnosed' just to read peoples stories!
when i went for my colposcopy the nurse talked me through what we were seeing on the screen and showed my abnormal cells which were in one area (or so it seemed) then she said due to the amount of area covered i think these are CIN1 but i will take a biopsy to confirm. i then had a letter 10 days later stating that the biopsy showed CIN3 and i would need re-assessment and treatment. i went back for another colposcopy but this time it was with a consultant, she didn't talk me through it like the last nurse did but carried out the LLETZ and said she thought she had 'got everything' but i may need to come back for more treatment if the LLETZ results show otherwise (i gathered this is like a large biopsy but someone correct me if im wrong).
I wish i had asked more questions about why my smear said CIN1 and it changed to a 3 and also i wanted to know if the strain of HPV i have is considered high-risk as i've read a few different things online but all these went out of my head...must have been the anasethetic!! i did manage to ask what are the chances of me having to come back for more treatment and she did say that LLETZ is a very effective procedure and further treatment is "unlikely but still possible"....
I'm sure if they think its CIN3 they will treat you on the same day, it sounds a really good idea taking your mum and she can remind you of any questions you had too! Hope that you're ok!
Rach xx :)
Oh Helen how worrying all this is, it's taking over my life too. I can't sleep, i am crying all the time. I turned down a fantastic job offer just one day after I read my letter. It's ruining my life and seems to be spiraling out of control for me :'(
I just want Wednesday to come and for her to give me some sort of reassurance of some kind as this issue is killing me inside. Not eating, moody, tearful... and constantly on my pc searching for clues regarding CIN3 or severe changes.
Hoping we all get good news either way soon and will be thinking of you all x
ladies ive been treated for different stages of cin for the last 3/4 years, started off cin1 and was left, a yr later went to moderated cin2 then on to cin3 within 6 months, we are very lucky in the uk to get the care that we get, my last biopsy came back No cancerous changes, and i think im suppose to celebrate this, but i wont cus in 6 mths time ill do it all over again, what i have decided is that i am no longer going to worry about this dam thing, as long as i go for all my colps i will receive the treatment that is required, and i shall just continue going, it is so stressful, so unbelievable upheaving, and so dam scary, but, i know that i m lucky because i am being wathced very carefully, be strong ladies, xxxxx also i can no longer go to local gp for smears, there all going to be done at the colp clinic.
Have they not performed the lletz that's meant to take away the bad cells?
I have had my lletz now, simple procedure and wasn't painful at all. She said she could see no sign of CIN3 but took away what she could see, it came up white under the iodine and vinigar solution. She said it looked just like mild abnormalities. Now i am scared she's missed something, where was the CIN3 :O it came up on my smear so i'm scared its further down in the canal hiding... Worrying all over again.
I have always had normal smear results and I have had to be re-tested once because the sample size was not enough. I had a cancer scare when I was 18 with a lump on my breast and the lump was removed and all fine.
So its a huge shock after starting to get more periods (thats what I thought they were) and having a few other symptoms that I get told that my cervix feels abnormal and the doctor says I have a few cysts and a number of large growths so looks as though I have gone past adnormal cell stage.
I was told I would be referred urgently but not much was said by the doctor which was monday. The lady who rang me from the hospital to book an appointment was so matter of fact and I was told at this present time they have capacity issues and cannot give me an appointment :-( However, I have been booked in by a different hospital for scans which I will still attend. The woman on the end of the phone didnt seem to care what I was going through at all.
On thursday day evening I received a copy of the referral letter which stated suspected cancer.....seeing it in black and white has devasted me.....and I am trying so hard to keep it together right now :-(
I hope your results come back clear Caro....I know how anxious it is with 3 small children.
x x x