CIN3 Need some advice please

I had successful surgery in 2021 for vulva squamous cell carcinoma and since then, have been diagnosed with high risk severe dyskarosis CIN3. I have had multiple LLETZ procedures and diathermy but the abnormal cells remain. Years of this procedure and many many biopsies have left minimal cervix tissue so my consultant suggested a hysterectomy as a last option. She wanted me to be fully optimised for surgery and advised me to loose weight (so I lost 5 stone) and arranged an urgent MRI with contrast. That was over a year ago…. and I’m still waiting to hear about the hysterectomy. 

Each appointment I have, they take biopsies and say they’ll discuss in MDT meetings… I’ve been told that at least 4 times. The margins are clear but the smear results are always high risk abnormal cells… which is odd because it’s all from the cervix right?

I am due another appointment mid April to discuss the most recent MDT outcome but other than the hysterectomy I’m not sure what else they can do. I need to push to get the surgery but not sure what I can do or say to them to put it in place. My original consultant that suggested the op has gone, the colposcopy nurse has left, they’ve a new computer system so only the most recent records show on it. It’s enough to push me over the edge!  Has anyone else been fighting this long for help? What can I do to get this sorted out? 

  • Hi Lorrain3, 

    Poor you - it is indeed enough to push you over the edge! How frustrating it must be for you after everything you've been through and losing all the weight to be still waiting for the hysterectomy and also to find out that your original consultant has gone and the colposcopy nurse has left too. The appointment mid April will be a good opportunity to discuss the most recent MDT outcome and see where things are regarding the hysterectomy. It will be a chance to ask questions and also to update them on your whole history from start to finish and to let them know that you have been waiting now for over a year. I think it's important that you share all the details with them especially if that new computer system only shows the most recent records and not the full story. Don't be afraid to let them know how you feel and that you really want to get this sorted out. 

    Don't hesitate to get in touch with our cancer nurses on this free number 0808 800 4040 if you would like to talk things through with them or ask them for advice on how best to proceed - their helpline is open Monday to Friday from 9am to 5pm. 

    Other members of our community may have been through something similar in the past and I hope that you will hear from their own stories and experiences. 

    I hope that you will get this sorted out soon once and for all! 

    Best wishes, 

    Lucie, Cancer Chat Moderator