Treatment options (hysterectomy) for high grade CGIN

Hi,

I have recently been diagnosed with high grade CGIN and had a loop excision.  Unfortunately the results of the loop came back to say that all of the abnormal cells had not been removed. I have been researching treatment for CGIN and hoped to discuss this with the Consultant at clinic this morning.  Unfortunately I was seen be a middle grade doctor who wasn't able to answer my questions about treatment options.

I am 38 but myself and my husband have no plans to have children (he has had a vasectomy).  I am therefore considering a hysterectomy in order to remove the worry of whether all of the abnormal cells have been removed (skip lesions) and also the incredibly long follow up regime.

I wondered whether anyone ele on the forum had had a hysterectomy for treatment for CGIN or if anyone had been made aware of the likley recurrence of CGIN following initial removal of the abnormal cells?

Thanks

Bek 

Hiya, so sorry to hear the treatment did not work, I also asked for a hysterectomy for CIN3 in my opinion I would rather have it taking away all together then go through it all again

me and my husband have decided anyways not to have any more children, however the consultant laughed at such a suggestion and said

i would be hard pushed to find any doctor to do such a procedure when there are other easier options in my opinion I think he means cheaper options

he also said I was too young I'm 29 I know I don't want any more children I was due to speak with a consultant to have my tubes tied when this happened in the first place so to me 

it's my body it really should be up to me what happens with it so to speak, I hope you have better luck then I did xxx

Hi Bek, I had Hysterectomy due to hgrade Cgin. It was the best option for me as I had completed my family. I had cin3 in 2004 followed by 10 clear smears and suddenly Cgin in 2012. I had Lletz, cone and top hat. My endocervical brush was inconclusive as my cervix had become Stenosed (short and closed). which meant I would not have been able to have close monitoring. I had my Hysterectomy (total hysterectomy via keyhole) After this you are still requires to have 2 further 'vault smears' from the vaginal cuff to ensure all cells have been removed and then you will be finished treatment. My pathology results showed that Cgin was still present in the cervix so I am pleased that I had the hysterectomy. This is just my story.. I know a lot of women can be treated successfully with Lletz alone and every individual in different. Sending you lots of positive thoughts. Please keep us updated. Luv Shaz x

Many thanks for the reply.  I have an appointment to see the Consultant to discuss treatment options on 8th May.  I have found a really intersting medical article in which 50% of the hysterectomy samples that went to the lab showed CGIN present that would have been undetectable via other treatment such as loop excision.  The major down side for me is that they don't offer laparascopic surgery at my local hospital so it may well have to be an abdominal one.....

Again many thanks - I'll post again once I've seen the Consultant.  Talking about CGIN and such radical treatment seems a bit strange particularly when you read some of the others really difficult stories having been diagnosed with cancer.....however better safe than sorry!

Bek

Hi Bek,

i think I'm in the same position as you. I had leep in feb and and had to have a repeat on tues as they found hg cgin and the margins weren't clear on the sample. Now just waiting for the results but seriously considering a hysterectomy! Could you tell me more about the article you found about the findings of cgin still being present in the womb after hysterectomy. I'm just scared that if I don't that it will be higher up and it won't be found until it's too late.

 

 

I recently had LLETZ to remove high grade cgin under local anaesthetic. My doctor told me I won’t get clear margins as he had to take the cells out in three parts but that he is confident all abornomal cells have been removed. Can I trust that this is the case? He said that I will now just be on a follow up programme with smears at 6 and then 18 months to check for hpv. 

Hi

i just wanted to post my experience on here. I too had a colposcopy on 14th Jan where I had a lletz treatment got a telephone call on 20th Jan when they asked my to come straight back to the hospital as they needed to discuss my colposcopy results. This was so worrying I didn't know what to expect. They told me they were worried about cells higher in the cervix and I had to have MRI scans to check this out.  
I thought this is it they are sure there is something there and the worry and anxiety levels I went through were very high.  I then had a follow up appt at which my MRI's were clear but I needed to have a cone biopsy under GA to make sure all got taken.  I managed to get myself through this and got myself out the other side and waited for the results.  10th Feb I get a phone call saying the high grade CGIN has been treated and removed. I felt like a weight had been taken off me.  So now a follow up in 6 months time. I am just hoping this will be clear and I can move on from there. 
The main reason for my post is to reassure you that you will get over the wait and the worry and it will feel

like the wait goes on for ever but try and enjoy your normal day to day and carry on as normal you will worry no matter what and no matter what anyone says. I too was worried it was going to be a hysterectomy as I was told this could be a possible option for me. But try and look on the positive that you have been screened and found with abnormal cells for them to treat and catch early enough. In the end I accepted that if I had to have a hysterectomy to get better then that is what I would have had. I was lucky and I am appreciative that I was lucky. 
 

I did not find loads online either but I thought this might help for anyone with high grade CGIN results like mine as I know I read lots of forums to help me get through it and I found everyone's positive experiences helpful 

Hi Bek,

I'd also be interested in the article you mentioned, as skip lesions is something I'm worried about with my diagnosis. Wishing you all the best with your decision making 

I am new to forum and would interested to know how you are doing as read your post, please dont reply if you dont want to. I completey understand