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MDT meeting post-colposcopy without LLETZ treatment?

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oms92
MDT meeting post-colposcopy without LLETZ treatment?

HI all

I'm a bit confused at the moment. I had my first smear in July, waited 9-10 weeks for results to be told I have moderate cell changes and need a colposcopy.

Went for the Colposcopy a month ago and had a polyp which the doctor removed there and then and she also took two biopsies. I could see the white cells there and then and asked if she was going to do a LLETZ procedure, having read about it online. She said no, they no longer do the LLETZ procedures without waiting for biopsy results as it can affect chances of having a baby (?!). So I asked whether there was a chance that I might not need them removing and she said no, I will need them removed. So she bascially said I will need the cells removing but they want to wait for the biopsy results.

Have called today to see if they have my results - my GP looked and said it seems to be the same as my smear, i.e. moderate cell changes but that he's not a specialist. I then called the hospital who said they were referring my case to an MDT which is in a month's time!!!

I'm just totally panicking now, if it's just moderate changes then why wouldn't I have just been offered the LLETZ treatement in my initial appointment? I'm also freaking out about having children if I need to have more serious treatment as I've just turned 27, don't have kids but definitely want them in a few years.

Has anybody had a similar experience where they didn't have a LLETZ treatment at the colposcopy, despite being told that cells would highly likely need to be removed? Or has anyone been referred to an MDT??

Thanks in advance ladies xxx

Lotty9000

Hi

It sounds like not doing a lletz before biopsy results is a policy of your NHS trust. The trust I am with offers lletz at first colposcopy if they can see cells that need removing. 

As a lletz proceedure removes tissue from the cervix, this carries a risk of preterm delivery in future pregnancies however this is very low and with only 1 lletz often causes no issues at all. 

I suspect that they have referred it to the MDT to ensure they carry out the most appropriate treatment for you. It may be that the cells are borderline for lletz and therefore they want to discuss to make sure you get the very best treatment with the least impact on you.

Try not to worry xxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

Julia9054

As you are only 27 and the cells are moderate, like Lotty says, you are probably borderline for lletz and they want to discuss it.

This is a good thing. There is increasing evidence that lots of cases of CIN2 especially in younger women regress by themselves. See and treat which is the policy in some areas is only appropriate in obvious cases in my opinion. It drags the whole process out and causes anxiety having to wait for biopsies but is better in the long run because the treatment is then more tailored to your specific circumstances. 

My personal theory is that the lowest level of invasive treatment that you can get away with is the best option. If you can get away with not having lletz and having close monitoring instead this is better especially as you are so young. 

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