No treatment offered for CIN3

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On Friday I was told I have CIN3 but unlike previous occasions, this time it’s too risky to remove it due to the location. So I’ve been advised they’ll monitor it. This took me by surprise as I just expected to have the usual unpleasant treatment. The uncertainty has left me very anxious and emotional. There were talks of a hysterectomy in the future but I may want another child and they were concerned it would be risky, as after the treatments I’ve had in the past the womb often fuses to the bladder so there’s a risk of leaving a hole.

I’m assured cancer is slow growing and can take years to develop but my smear in 2023 showed HPV only and in February 2024 it showed CIN1 but the biopsy in April 2024 showed CIN3. If we leave it and monitor it, I’m worried it’ll progress to cancer quickly as the test results already indicate rapid changes over a short period of time. I’m also told that not all CIN3 develops to cancer but I’m also aware there isn’t much data to analyse as most CIN3 cases are treated.

The thought of a hysterectomy scares me. My partner is 10 years younger and doesn’t have children of his own. I’m told the waiting list for a hysterectomy is a year and as cancer is slow growing, there is the option of having another child. They advised I need to move quickly because of my age (I’m 40) but it’s a new relationship so I’m not in a position to make that decision yet. I feel it’s a ticking time bomb that may or may not go off, and the unexpected pressure could end my relationship as it’s still new. The risks of pregnancy at my age and with a short cervix worries me, as does the risks and aging affects of a hysterectomy but right now being offered no treatment is causing me the biggest anxiety as I feel I may end up with a worse prognosis.

I‘m trying to get hold of my medical records, some of which appear to have been lost, so I can get a second opinion and I’m seeking mental health support through work. However, I don’t know how I can live with this level of uncertainty in the short or long term. Has anyone else been in a similar situation where they believe the best course of action is no treatment?

  • Hi  and welcome to our group.

    I’m sorry your appointment has caused such uncertainty and I can understand why you expected CIN3 to be treated. What a difficult position you have found yourself in, with no clear way forward.

    I’m not sure if anyone has been in the same situation of CIN3 not been treated, but hopefully if someone has had this happen they might come along and comment. I haven’t, as I went straight to a cancer diagnosis myself.

    There is no way of knowing whether the CIN3 might ever progress to cancer, or how long it might take if that does happen. How often would you be monitored and checked if you leave things as they are?

    Have you had treatment in the past? I see you are worried about a short cervix in pregnancy and you mentioned “previous occasions” so have you already and any LLETZ treatment before? 

    Getting a second opinion could be helpful for you in letting you come to a decision about what might be best, so I hope you can get that arranged as soon as you have all your records. 

    Sarah xx

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