Hello ladies,
Its taken me some time to actullay ask a question on here. I have read some really good advice and realised thats what Jo's is for. Many thanks in anticipation of any response.
I had my very first smear in April this year (2014) and the results came back high grade CIN 3. I was swiftly booked in for a LLETZ with LA. Not a very nice experience, however, glad I was in the chair and feeling lucky.
It was an easy 4-6 weeks wait (I thought it was all gone after treatment) until I realised it was knocking on for 7 weeks and I hadn't heard a bean. Another girl i know had been treated for CIN2 2 weeks after me but already had her results back... My anxious Mind starts ticking, so, I called the colposcopy clinic only to be told my case was being referred to a Medical Disiplinary Team meeting...!!!!
The (Locum) Consultant told me it was 'nothing to worry about but the cells had been discovered further into the neck of the womb and so a 'special' meeting was being held to decide how to best manage it'. He then went on to say this MDT meeting was being postponed due to four of the six consultants (required in attendance) were on annual leave and so it would be happeneing in September 2014... HOLD TIGHT.
Now being the crazy lady that I am - I knew straight away there was no way I could wait - I thought i got rid of this and now I havent?? First instinct is to ring hospital over and over again until i get some answers...The consultant did call to assure me 'things woulld not get messy between now and then'....his words not mine!
I have private health insurance through work and so enlisted a consultant to review my case for a second opinion (he would also be able to give any further treatment he deemed neccessary).
I ofcourse called the NHS to tell them that I was going private and the MDT meeting may as well be cancelled. I got a call straight back from another NHS consultant at a different NHS hospital with a pre op consultancy, along with a time and date to have geneal anethestic so they can do a more successful LLETZ (pre op 27/08/14. Second LLETZ 02/09/2014). I have been advised to stay with the NHS as they have a better knowledge of my medical history.... SO I have cancelled the private appointment.
This is where i need your advice.... I'm a naturally anxious person (although not because of the severity or fear of CC) and so would much rather not have to go through the 4-8 weeks wait after every treatment or smear....so... I would ask - is it unreasonable to ask for an elective hysterectomy (I am fortunate enough to have already completed my family)?
Many thanks again for taking the time to read.
Nicole
Hi Nicole
Sorry to hear about your experience. I can't offer any advice re the hysterectomy option I'm afraid but I wanted to hopefully put your mind at rest about your results being referred to the multi-disciplinary meeting. I had my LLETZ in June and was told my results were being referred to a similar meeting (In my case, my results were discussed as they weren't sure if the LLETZ had eliminated all the CIN3 as the cells were quite far up the canal). It all does sound scary as you wonder why - but from what I've read and been told, it is quite a common occurence. The meeting is usually held to discuss a number of patients results rather than one individual - I fully get how frustrating it must've been to hear it had been cancelled and moved to September and can understand why you had considered going private instead. The waiting's the hardest part I found.
Good to hear things are in hand with the new hospital
xx
Hi Louisella,
Thank you for responding so quickly.
In relation to the MDT meeting - I wonder its real purpose is. Purely because they wanted to hold one for me now they have suddenly asked another NHS consultant and he is willing to offer treatment without the professionals disucssing it?
Is it adding unnecessary waiting tiime?
Best of luck to you on the 11th xxx
Thanks Nicole, that's really kind of you to say xx
Re the meeting, did they definitely say the meeting was specifically to discuss your results only? The way it was explained to me is that a number of consultants get together to discuss a number of patients - so kind of a meeting of specialist minds rather than just one person looking at one patients' results. This is usually if there's any doubt or grey areas about the best way forward (e.g. if the margins are particularly clear). So if a few of the consultants were unavailable on that particular day, it would make sense that the meeting was rescheduled (although it doesn't help you much with the waiting - I know I'd be annoyed!)
It may also then be that the consultant at the other hospital had an opening and as they could see you were worried enough to go private, they managed to slot you in there.
Also, have they definitely confirmed it to be CGIN? The only reason I ask is your post mentions cells further into the neck of the womb - these could still be CIN3 rather than CGIN (which is when the deeper glandular cells are affected. My misbehaving cells are quite high up in the endocervical canal and have been graded CIN3)
I know it's much easier to say but harder to do but try not to worry - it all looks like it's in hand and hopefully you can keep yourself busy in the meantime to take your mind off it (again, easier said than done, I know!)
xxx
