Since 2018 I have repeatedly had CIN3 severe cells & have in total had 4 LLETZ procedures.
6 months following my last LLETZ which produced clear margins, Jan this year I had my most recent smear. The results have came back CIN3 high grade / severe once again.
After a MDT this week, the consultant called to tell me they are concerned & recommending an urgent total hysterectomy within the next 6-8 weeks.
I am due to go in for a meeting within the next week & to discuss an examination to see if these cells are anywhere else (vaginal walls etc)
If anyone has been in a similar situation; what questions would you recommend I ask?
Hi Rebecca
I was told on Thursday that I needed to have a hysterectomy because CIN 3 cells were in too hazardous a position to risk another Letz or cone biopsy. Like you, I have been chasing CIN 3 without luck. Whist I was shocked and upset at the time, I do appreciate that it wasn’t a cc diagnosis. Surgery planned for 6-8 weeks so have a bit of time to adjust. Unlike you, I am past childbearing age. Not easy news for you at all and hope you have good support around you x
Hi I wondered if I might ask how your meeting went and what the plan was moving forward? I am waiting to speak to consultants after my 3rd LLETZ for CIN3 showed in the biopsy that they couldn’t determine clear margins high in the canal where they did a top hat procedure) (1st LLETZ was 2015 for CIN3 , and 2nd LLETZ was Oct 2023 and produced no clear margins). Nurse didn’t think a 4th LLETZ was an option as so much removed already. If they need MDT decision it’s another 4 week wait I know hysterectomy is likely on the cards but also wondering what best to ask to prepare. I hope things are going okay for you x
I’ve had two conversations with consultants & an iodine staining examination in the time since I was last here.
The iodine didn’t show the abnormal cells on the surface of the cervix, despite the severe CIN3 smear result. I am due an MRI any day to completely rule out cancer (it feels very alien to even say that word) & although I’m being pragmatic & the consultants have said that this would be a shock, there is that small niggle of worry.
Regardless of the MRI, a total hysterectomy is suggested as the best course of action. I still don’t know how I feel about this, I have one son & making the decision as to whether the family is complete is a tricky one.
Thank you so much for replying & I hope you’re both doing okay?
Hi Rebecca,
Thanks for your reply. Hope you are okay- any news in your surgery date? Sounds like we are on a similar journey as I also am now listed for hysterectomy in a few weeks, with MRI as precaution check first. A lot to take in… ! X
I know hysterectomy is likely on the cards but also wondering what best to ask to prepare. I hope things are going okay for you x
