from cin1 to high grade cin and cgin and MDT meeting??

Hi everyone,

 So I havent been on here in over a year!  I had a colposcopy and biopsy in january last year, following 2 abnormal smear results, which came back as cin1 and to have a follow up colposcopy in 12 months. So I went back on 7th jan for my follow up colposcopy and had more biopsys and a smear done afterwards the consultant said that it looked like it was still cin1 and didnt look any worse than it did a year ago. So I left feeling really positive :) . On 25th January I received a letter to say that the smear came back as normal however the biopsy showed cgin and i was booked in to have a lletz treatment on the 30th jan. So I arrive for my lletz and it was a different consultant to last time she explained the lletz procedure beforehand and told me it will only take about 30 seconds to remove the abnormal cells. when she had a look at my cervix she said that I had definate high grade cin and she also said that she would normally treat this type of abnormality under a GA she said if i have to have it again she is definately doing it with GA. The actual lletz procedure seemed to take much longer than the 30 seconds she told me! After she said that it is usually a 2 week wait for results but she is going to try and hurry it through and hopefully they will be back in about 7 days! So hoping this was the case I called the colposcopy secretary yesterday ( 8days after lletz) she said there is no results yet however my case was going to be discussed at an MDT meeting next monday and so I will be getting the results after that.

I am feeling so confused that in the space of a couple of weeks I have been told its cin1 to cgin and now high grade cin, what exactly do i have then?? and why am I being discussed at an MDT???  I am trying to stay positive but it is so hard when you are waiting and waiting for results. I dont understand why I was told on the 7th that everything looked ok and def didnt look any worse than 12 months ago and a couple of weeks later Im told something completely different and also why did my smear come back normal too?

Has anyone else been in a similar situation???

Oh dear, try and stay positive, easier said than done, maybe they want to have a meeting as some findings don't add up- like your smear says normal and the findings say other wise etc- I'm just waiting for my biopsy results- doctor said it look very mild but iv learnt to not take anything in till I have it in black and white. Try and take your mind off it until you know exactly what you are dealing with, try not to stress as this will make it worse- tame vitimins I heard folic acid is really good, you need to save all this energy on worry and just wait till you know for sure, of your still not getting answers etc then maybe pay privately or get a second opinion- do you have any symptoms?? Xx

Thank you for your reply, when did you have the biopsys done?

After my colposcopy on the 7th I was really calm and wasnt worried about getting the results back after what the consultant had said to me about it still looking like only mild changes. But now its all i can think about :( I was thinking the same about the MDT meeting as she said about looking through all my past results so Im hoping thats just a routine thing if you have diferent results than expected?? I have had bleeding after intercourse and lower abdo pain and discharge for nearly 2 yrs now went to drs numerous times had swabs etc all normal, was given antibiotics for urine infections that i never even had!! But so far havent found any cause for these problems. I was booked in to have an abdominal and vaginal ultrasound on monday but had to cancel it because I had the lletz last week so I cant have vaginal ultrasound done for at least 4 weeks after

I has my biopsy on the 29th ofJanuary so still waiting for results, it's horrible isn't it, something like 5% of woman have to go through this and I just think why me all the time!! I'm nervous as they said mild to me but with all my symptoms I'm just gonna wait for that biopsy result, I hope it comes back ok for you. Xxx

The waiting part has really driven me mad this time! Had an NHS letter in the post this morning so thought it was results from LLETZ but no it was a change of appointment letter for my ultrasound :( Had a little cry and decided to call the colposcopy secretary to see if she will tell me anything as I know they had the MDT meeting yesterday. She asked me what date I had the LLETZ i told her it was 13 days ago she replied oh they wont be back yet, So I told her I knew the results were due to be discussed at the MDT meeting yesterday so she agreed to go and check. She came back and said that my letter has been dictated and I will receive it within the next couple of days but wouldnt tell me anything else! Last time when I had cin1 she told me results over the phone so this has got me slightly worried, wish I hadnt phoned now!! So anyway looks like I will spend the next few days stalking the postman until my letter finally arrives and hopefully brings me some good news!!

Hope you get some good news from your biopsy soon too :)

Sarah

Hi Sarah, I can only imagine how you feel! I have to say, it took my LLETZ results 3 weeks to come back, but in a meantime I went to my GP just to ask for an acne prescription. But whilst there, I have managed to ask him to log in to the central database and print out the report for me, which was issued 10 days after my 2nd LLETZ. If you can get a GP appoitment, this might be worth a shout? The report is written in a different language, as this comes from the pathologist office but with the help of my GP we have managed to decrypt it. Good luck!! Tina xxx

Never thought about asking my GP, only problem is its a nightmare getting an appointment ususally its at least a 3/4 day wait :/   I think I will wait until friday as the secretary said i will receive them this week and if I havent received a letter I will phone again and maybe speak to my gp surgery too and see if I can find anything out. I just find it so frustrating knowing that it has been discussed at the meeting on monday and Im still none the wiser about whats happening!! Im trying to keep myself busy but still find myself thinking about it most of the time. Oh well a couple more days and I should know for sure

xxx

Hi Sarah

Hoping you receive your letter on Friday with some positive results!

Just wanted to let you know that my results went to the MDT as a routine thing because they were so different to what the consultant saw at the colposcopy. I was pretty scared when I heard this at first but when I read into it a bit more, I looked at it as a really positive thing because it wasn't just one consultant checking over my results, but a team of them making a decision about what to do with me - so to speak! The MDT is generally to make a decision on your future management, whether they want to treat you again or if they are happy to just see you for a review. Either way, try stay positive :)

Good luck and let us know how you get on.

Sarah xx

Hi sarah,

Thank you for your reply, thats a really helpful positive way of thinking about the MDT meeting :) hadnt really thought of it in that way.

Im really hoping that my results will arrive tomorrow, whatever the results are I just want to know either way! Im the kind of person who likes to feel in control of situations and I think knowing that other people have discussed my results and future management and I still have no clue what has been discussed is very frustrating for me.

If you don't mind me asking what was the outcome of your situation?

I will update as soon as these results arrive,  thanks again for taking the time to reply :)

Sarah

I can definitely relate to that, it's the 'not knowing' that's the worst. Especially when other people know about what's going on with our bodies and we don't! It seems unfair doesn't it. I think it's positive that you've not heard anything yet, without that sounding strange. Did you say the MDT was on Monday?

Of course not, my results went to MDT because the consultant thought she saw severe changes at colposcopy. She took some biopsy's and also an endocervical biopsy for the glandular cells. The result was inflammation and hormone related changes only, so I can definitely see why my results needed to be discussed. They have just decided to see me again in 6 months.

Anything else you need to ask, feel free to. Keeping my fingers crossed for you.

xx

yes the meeting was on monday, I phoned on tuesday and all the secretary would tell me was that the letter had been dictated she will type it up and i will receive it this week for definate, I know its only been 15 days since i had the LLETZ but at the time the consultant said she was going to rush it through and hopefully would have the results in about a week so as you can imagine 15 days has seemed more like 4 weeks!! My husband keeps telling me if it was anything too serious I would have heard something by now but u just never know do u? I have read other stories where people didnt get results for 3/4 weeks even when it was bad news :( and i guess its natural for me to just think the worst!!

Thank you its always good to hear other peoples experiences, when is your 6months check due? I hope you get good news whenever it is :) x

Hi Sarah,

Just a quick message to let you know that I’ve been keeping everything crossed for you!

Tina x

Hi Hope everyone is well,

Finally got a call today from the hospital, they apologised for the delay in sending out my results and were able to tell me over the phone that I had cin2 and high grade cgin and no cancer was found, they said it was successfully removed with the LLETZ ( I think this means clear margins...?? ) I have a follow up again at the end of July for another colposcopy. :) Also have a pelvic ultrasound booked for beginning of march.

Am currently experiencing my first period since the LLETZ :O didnt quite expect it to be this bad!! But nothing is going to dampen my mood now :)

I can't tell you how relieved and lucky I feel, thank you ladies for all your support and reassurance over the past few weeks, please keep me updated on how things are going for you all

Sarah xx

Woo! Congratulations :) Excellent news :) x

Yey:) Very happy for you!! x

Finally received my letter this morning, this is what it says:

I am writing to you following the treatment I performed on 30/01/13. Just to summarise your original smear in dec 2011 was borderline possibly high grade. The colposcopy in Jan 2012 showed cin1. The repeat colposcopy on 07/01/13 also showed cin1 but the biopsy showed CGIN.

Following the biopsy result I performed a loop excision treatment under LA on 30/01/13. The histology has been reported confirming cin2 that was completely removed with HPV changes at the ectocervical level and there was high grade CGIN that was completely removed. It is quite reassuring and no cancerous cells were seen. In view of that we have agreed that you only need a colposcopy and smear plus endocervical brush in 6 months time.

Sounds like a positive outcome :) The only part Im not sure on is the HPV at ectocervical level??.... any ideas what this means??? Also wish they didnt say 'it is quite reassuring' why not write ' it is reassuring'!! But thats just that little worry and the back of my mind i guess!!

Sarah