Cin 3 and options limited why?

Hello I was diagnosed cin 3 dyscriosis changes over three years ago ,I’ve not had any procedures because I don’t want letz,I also asked for another smear test to double check the results,I was refused another smear to check the results so I’ve only just been given another smear test in November of which the results where still not give to me and we are now February? I’ve just had another letter saying they’ve had yet another meeting to discuss me again and a way to move forward they suggested let’s again ,I don’t want letz procedure.its taken nearly 3 years for me to refuse treatment of letz and be given the option of another smear in November 2024 now they havnt given me the new results and asking for me to have Metz again ? Surely I can have a mri or pet scan to check for cancer ? Why such invasive treatment of lettz I’m not like a block of cheese that can be cut around by a wire slicing bits off me .the thought makes me feel sick . Obviously I want to stay alive and healthy but I don’t want to cause myself unnessery harm pain unless I’m diognosed properly (not maybes )?       As I’m so tender getting a smear was hard work they suggested I go in under general anisetic but it all seems to much when I’ve no concrete diagnosis. I had cin 2 over 20 years ago and I didn’t have Metz because I fell pregnant,this is not the first time I’ve had cin 2 and it went on its own ,I now have cin 3 I guess I’m struggling now with my bowls and enlargement of tummy ect and a lot of pain too so I admit I need help urgent but I’m convinced I need mri /pet scan to gather the information that’s concrete evidence of cancer if there’s any inside me that’s spread ect .     Or blood tests ? I want to stay well but I don’t feel I’m being listened to ? 

  • Hello and thank you for your post,

    I am sorry to hear about your situation and I can appreciate this is a difficult time for you.

    I don't know if avoiding the LLETZ is going to be the safest thing to do. From what you tell us it does seem you have been through a lot but it also seems that the gynaecology team involved in your case is thoroughly looking at your situation. They again are recommending a LLETZ procedure after the multidisciplinary team meeting where they would have reviewed all your smear test and colposcopy biopsy results. I think it is likely they would also know your November smear test results. Your GP is likely to have the results so you could ask them

    A LLETZ procedure is recommended with a CIN 3 because there is an increased risk of it developing into cancer. It is important to remove the cells before they become cancer, A scan can only possibly see cancer and no blood test can say if you have cervical cancer. It is much better to prevent cervical cancer rather than treat a cancer.

    We have information about treating abnormal cervical cells on our website. It might be useful to look at this.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care 

    Caroline 

  • Thankyou for your reply and obviously i understand fully your reply as I’ve also discussed this with the teams .however my question is why does a patient have to except the result based on one smear result ,? Resukts can be wrong ? It’s important for a patient to have the option for a second smear test to check and the patient should not have to wait almost three years whilst trying not to have a letz if they don’t want it done .pstient choice should be important? I was of the understanding that a blood test can now determine prostrate cancer as well as markers for other cancers in women?am I incorrect? My point is I’m avoiding treatment of such a nature due to the importance of side affects such as pain healing bleeding length of time it can take to recover ? So infact I could have all that done and actually my body coukd be clear of anything turning into cancer atal so I’d put my body though that procedure for no reason other than maybe I might grow a cancer,that didn’t seem justified. A bit like saying cut your mole off because it might turn into something worrying .infact I have moles that change all the time lumpy black bits but I’ve never been told it’s best to cut them off .Surely there must be a way to resolve this where we can all agree? I’m happy to have mri pet scan and a ct scan and or X-ray to check my chest too .my health isn’t great atal I struggle mobility and pains in stomachs and breathing I get breathless and have recently been given a asthma pump to open airways .im in so much discomfort in my stomach,constant infections urine blood plus L plus protein.antibiotics and most recently high heart at gp visit 118 .        Surely wasting nhs money on meeting after meeting about me coukd have paid for the cost of mri blood tests three times over ? Just saying be good to feel I being listened to instead of this IF one disagrees with treatment process your Basicly left agrueing it for three years that you want other tests before any surgery? Why should I have to fight for the right to be treated how I wish to be treated and proceed . ? Otherwise I get no treatment atal if o don’t agree with lettz procedure? 

  • Thank you for getting back to us again,

    It is difficult to be able to advise you without being involved in your care but as Nurse Caroline said the Lletz procedure is probably the best test for your CIN 3. It will enable the colposcopist to have a visual look at your cervix when they do the procedure. A scan will not be able to look at the cervix in quite the same way.

    We do have a very well thought out screening programme in this country with the aim of preventing cancer from occurring in the first place.

    At the present time there is no blood test that can help diagnose cervical cancer so unfortunately I don't think that this will be an option.

    You have posted in 'ask the nurses' but if you post on a different thread you may find that you hear from other women who have had the Lletz procedure.

    You could also get in touch with The Eve Appeal and they may be able to give you more information which you might find helpful.

    I do hope that you are also able to talk this through with your doctors.

    All the best,

    Catherine