Hi Laura,
They were planning on hysterectomy after my stage 1a1 diagnosis and then covid delays set it back. Tbh covid delays set everything back, I didn’t get told I had cancer for 10 weeks after my first LLETZ.
I don’t know enough medically to know the answer to your question, but I have psyched myself up for a hysterectomy aftsr everything my oncologist and macmillan nurse have said.
Yep, still waiting.
https://www.gov.uk/government/publications/be-clear-on-cancer-first-national-cervical-screening-saves-lives-campaign/result-letters-delivered-within-14-days
Today marks 5 weeks and I’m still waiting.
Any news lovely?
I’m so sorry to hear of those who have had abnormal cell changes again. Sending love and hugs x
5 weeks and 1 day here too. However I did speak to PALS again with regards to the wayward letter on the 9th and they said they could see a letter had been typed on the 8th so I should hopefully receive something my snail mail shortly. Fingers crossed.
hope you receive something soon! I’ve still heard nothing it will be 6 weeks tomorrow, same as you. I can’t face ringing them I’m resigned to bad news with it taking this long. Makes me think they are having to do loads of tests on the sample rather than a simple case of testing for HPV and that being negative 
I was hoping to find a letter in my doormat when I got home from work tonight but no such luck. But yep 6 weeks tomorrow. Fingers crossed your hospital is the same as mine and is just slow getting the letters out. I’m hoping mine is positive given the letter was typed on the 8th and I’ve had no phone call. I hope yours is the same xx
Well I called the Secretaries again today and they were very apologetic that I hadn’t received my letter which was posted on the 8th. She then read the letter out to me which basically said something along the lines of ‘Further to your treatment for CGIN and subsequent smear (TOC)the results have been discussed at MDT and you have been recalled for a further smear in colposcopy which has been booked for you in April’. I asked if that meant I was still hrHPV positive and she was unable to tell me. I’m also unsure if that means I can go in to have IVF treatment. Looking at the gov.uk advice for follow up treatment of CGIN it seems to suggest a further smear 12 months after that last or 18 months from lletz treatment if the patient fails the test of cure for purely hrHPV positive results. So of course now I am worrying that there are cell changes or something else because they have called me forward earlier. I’m worried my chance to have children is slipping away from me.
I’m so sorry to read this it seems there is a real lack of clarity and I’m shocked that by the sounds of it, your letter is not going to report the results to you? Is there any way you can find out what your actual results are? Perhaps you could request an appointment with a colposcopy nurse to actually discuss with you what is going on and what your options may be going forward! Still no news for me either on the letter front.
Just thinking actually - if any abnormal cells were found I would have thought you would have needed to come in now, rather than in 6 months time for a biopsy isn’t that standard?
God that’s really awful. I can’t believe you haven’t heard anything yet. Have you tried ringing and asking after the results? I’ve been through all sorts of emotions today from anger at having to wait so long and even my GP presuming the letter lost to my current point of being quite low and crying. My partner is a paramedic and said to me that if he had £1 for every time a patient received a vague letter or weren’t informed about their treatment or diagnosis by medical professionals he’d be a very rich man. I’m going to ring again tomorrow and ask to speak to someone who can explain it better to me. I really hope you get some news soon. Yours had best be positive xx
I found some info on it on the gov.uk website and Public Health England which just says refer to colposcopy but doesn’t give a time frame. The time frame for TOC following CGIN is 6 months for treatment and then 18 months from treatment even if HPV positive. Only I’ve been recalled 6 months and 12 months. I really don’t know what it means. I just know I can’t take that TOC letter to my IVF coordinator and them accept me for treatment as it tells them and me nothing.
I’m so sorry but I really do think if there was any concern of abnormalities, particularly CGIN that they would need to see you now? Whatever this is, I think their thinking is that your body might take care of it on its own by April and you don’t currently require treatment. Some people just take a bit longer to clear HPV - the rates increase at 12 and 18 months compared with 6 months.
I don’t hold much hope for myself, I’m in my thirties with Crohn’s disease and been taking an immune-suppressing drug for 5 years. I think it’s going to be really difficult for me to clear it, I’ve been testing positive since 2008 but only this year required treatment.
You may be right. I’m a total worry wart tonight, sorry. I’m pushing 40 and the chance to have a child is limited. I just feel this immense pressure now to have it happen, if it will at all, immenently.
Please don’t apologise, It’s such a horrible worrying process I just wanted to offer you some reassurance. I think it’s appalling how long all this has taken there should be legal requirements to make it quicker! It’s just been 6 weeks of hell checking the post every day for both of us. I’ve always got my results within 2 weeks in the past but this is the first time I’ve done a smear via the hospital. Maybe I should ring tomorrow I’m just scared I’m not sure I want the results read out on the phone.
I’m sorry to hear about your fertility concerns, it may be something you could ask for clarity on at the colposcopy. I’ve seen on here women have undergone more invasive treatments such as trachelectomy and gone on to get pregnant.
Wow 6 weeks wait 
I’m not sure I can wait 6 weeks again, I just had my 6 month check up and he said a few weeks which I knew it wouldn’t be 
always so vague. I’m waiting to go on the list for a hysterectomy but can’t untill he knows the mass he found isn’t the return of the dreaded cc. @KultKoala it will really is so horrible when they send these stupid vague letters that don’t exactly explain anything to you, I would call them back and ask them to explain everything to hou and if they don’t know ask for the consultant to call hou and then you don’t need to stress for a while xxx
I don’t think it’s standard practice to read results in the phone. In fact their answerphone says they don’t but I think the secretary took pity because she knew I should have received my letter. I guess the letter didn’t say an awful lot either. I think it took longer for my results because they were discussed at MDT too. The government goals is 2 weeks for results. I know there is a huge backlog of patients for smears at the moment but you are right, waiting this long is appalling. If you decide to chase your results we will be here waiting to offer support.
They won’t be able to tell me much re the fertility side of things. I just want to know I can go ahead as we are looking at treatment in the Czech Republic.
I’ve already spent loads of money on bloods and scans and sperm analysis in preparation. I know I now have to be monitored for Cervical length should I get pregnant and have a higher chance of miscarriage and preterm birth. It would be amazing just to be able to get pregnant though. I had a miscarriage at 8 weeks following clomiphene treatment at 24 years old and nothing since. But yeah I believe they can put in a cervical stitch for an incompetent cervix or as you say perform a trachelectomy to preserve fertility.
Wishing all the best for your results Frankiej. I’m going to call tomorrow and ask for further clarification. I am being a stress head about it all. It all just imploded tonight. Thank you both for listening to me and being there xx
Hello not sure at 12 months exactly but Lletz is effective for 90 % of the women that get treated and never have cell changes again . That is what I been reading in different sites European from US and UK but I have also come across others that say is actually higher than 90 % when Lletz is done correctly at every single surgery so I guess the person that does it matters a lot also and how good they are .
And of course the inmune system getting rid of this F… virus excuse my French is what makes all the difference at the end.
Take care 
