Hi Ladies,
Just hoping for some advice. I had my 1st smear and never received my results, a week or so later I recieved a call asking me to go to colposcopy. Once there the Dr never explained what was going on but I had a LLETZ straight away. 3 weeks later (two days ago) I was called in for an appointment with my consultant who says I have 1B1 stage cc and that they couldn't remove it with the LLETZ procedure. He told me I will need an MRI and other tests but they would be discussed at an MDT metting on Friday.
After reading a few posts on here I can see alot of ladies didn't get staged until after their MRI. Does that mean it could actually be a higher stage?
Also, what treatment have you ladies had? I was hoping I could get away with having a cone biopsy but it looks like you girls diagnosed with the same stage as me have had to have a trachelectomy/hysterectomy. This is my worst nightmare as I'm only 24 and havent started my family yet :(.
I know noone can give me a definate answer until all the tests are done. I was just hoping for some advice or to see what experiences you ladies have had.
Thanks xx
Any help would be really appreciated xx
Hi Shannon!
Welcome to the forum, although I'm sure you'd rather not be here. I think your staging is preliminary and MRI is needed to confirm it, however the preliminary staging is normally correct most of the time. The treatment depends very much on the size, location etc of your cancer and also on your consultants view on new procedures etc. Most of the ladies with 1b1 have trachelectomies if they wish to preserve the fertility and fit a strict criteria for this procedure. I've had a large cone with lymph node removal, even though I was 1b1 and I also met a couple of girls on here who were treated with the same. So it is possible in theory, however it's also perfectly possible to get pregnant after trachelectomy and there are many examples of that here. You will have a better idea after you've met with the consultant.. Until then be strong as waiting is the worst!
Fingers crossed for you..
xx Anna
Thank you Anna! It's nice to know people have had a more positive experience than everything just being taken out.
waiting really is the worst but I suppose there is nothing that can be done about that xx
Hi, just a quick wee message to firstly say hi and secondly to reassure you that the majority of people are still the same stage after MRI and CT scans. I was diagnosed with 1a2 before tests and it was confirmed the same afterwards.
take care and wishing you all the best x
I too was staged before my MRI. It only confirmed that the doctor was correct on my staging.
Thanks for your comments girls. It has made me feel better knowing your stages were all the same.
The nurse called today and I have an MRI next tuessay and a consultation with the results on Friday.... very nervous for another weeks wait but will be keeping my fingers and toes crossed xx
Hey there to echo what the ladies have already said - usually they have a good idea and the MRI and examinations confirm this.
They will prob know you are 1b1 from the size of the tissue they removed during Lletz treatment. This is what happened with me. Had MRI and examination under anesthetic and all confirmed what they originally thought.
I had a trachelectomy end of April, let me know how you get on best of luck! This bit absolutely sucks xxx
Hi,
Sorry that you have been diagnosed. I know it is such a hard time with so many what ifs spinning around in your head.
I was staged 1b1 and had no MRI to confirm it. I waited until 6 month post op, I personally found this strange as on here everyone seems to have the MRI to confirm staging. I was called in a week or so after the colposcopy. I then had a cone biopsy and was given the option of a further cone, trach or hysterectomy. I chose the trach as I am not personally a supr maternal person but knew that I would still have the possibility of bearing a child in the future. I am happy and feel I made the right decision for me. I am 27 and have no children.
HI Shannon
I just wanted to reassure you that I was told I was 1a1 after LLETZ and had to have an MRI to confirm. The MRI showed no further spread. I was over a hysterectomy or a cone biopsy, but as we haven't completed our family I opted for the cone biopsy. The aim was to ensure clear margins and was told that it had all been removed during my initial LLETZ procedure.
I will need a cervical stitch on my next pregnancy, and a hysterectomy when we don't want any more children.
Hope you're holding up OK. Try to stay positive! I found this forum hugely helpful. The waiting is definitely the worst bit x
Thank you all so much for your comments.
All of your kindness and positivity has really helped me over the last few weeks, you are all just so encouraging so thanks for that :-)
I had my MRI yesterday and have an appointment with the consultant on Friday so will let you all know how it goes.
It's nice to have people to talk to as most of my friends are my age and haven't even had a smear yet.
You're all awesome xxx
Hi Shannon,
how did did you get on? Just wanted to say if you have any questions about treatment then feel free to ask! I'm 3 weeks post op, trachelectomy. and am hoping to start trying or a Baby as soon as they give me the green light!
Gill. X
Hi Gilly I'm having the same operation and wondered how you are feeling after 3 weeks as I'm hoping to go back to work then?
Thanks
Tori
Hi Shannon,
My MRI confirmed my staging of 1b1 and I'm having the trach and lymph node removal to try and preserve my fertility, the worst thing about this whole thing is the waiting and the what ifs that go through your mind this is normal! I found talking and reading on here very helpful!
Big hugs
Tori x
