Called back in to see gyno??

thanks Sarah x yes forums can be very helpful but they def have their downsides too x will call the nurse i saw yesterdsy, she was very kind and supportive so sure she’ll understand why i’m concerned x thanks again x

Hi Seffie,

I hope you manage to get some more information, I think you deserve a full explanation regarding your treatment plan. 

From my experience I think the info  may have to come from your Consultant.

Perhaps as you say the approach has changed but you néed full information.

I agree with you about forums, you have to be very careful as they can cause stress and can also be incorrect. This forum is by far the best one I found and is the only one I am on. 

I wish you well, I know what a difficult time this is.

S x

Thanks Serena x i have rung the hospital and am waiting for the Macmillan nurses to ring me back x its frustrating because as you can imagine yesterday i was massively relueved but then doubts kept coming into my mind and i just thought but the standard treatment for this stage is hysterectomy x i presume the MDT made this decision not just the gyno so i want to know why x evdn tho everything else looked clear from the mri i have seen many others get different results from the surgery pathology, i dont even know if an mri would show up lvsi involvement x i shouldnt have to question my treatment like this but this is my life so i have to! i was so happy and now just really confused and anxious again x thanks x

I totally understand and agree with everything you say. Don't hesitate for one second to question your treatment.

When the nurse told me over phone that cancer had been found following Lletz I asked about treatment and she told me it would be hysterectomy or chemoradiation depending on the mri result. I only saw consultant after mri result and he told me the treatment for 1B1 Adenocarcinoma was radical hysterectomy with removal of ovaries. Of course my understanding from your posts is that you have not been told actual stage, initially you were told 1B1 but now you think not the case following mri. 

My stage went from 1B1 to 1B2 with pathology after hysterectomy and  they examined everything removed for spread.

If you have email for your nurse contact it may be worth listing all your questions.Your concerns then on record. It is sometimes difficult to get all the answers over phone and Personally I think the Consultant should speak to you. 

Serena xx

Thanks Serena, thats very helpful x the macmillan nurse just rang me back and explained it all to me x she said that the decision will have come from MDT and its standard practice for them to do 2 LLETZ before advising a hysterectomy (i guess for early stage cc) so what happens next will depend on the biopsy results from yesterdays LLETZ which will go back to the MDT again x if its not clear margins then they would do a hysterectomy otherwise i would go back in 6 months x i will just wait and see what this biopsy says and try to trust them, i know that everyone has a different diagnosis and its unique so its not always helpful to see what others have had done and compare, i have seen people with 1b1 have surgery and others go straight to chemo/rads x i have also read newer studies like concerv suggesting less radical treatment for early stage x she said they dont put you through major surgery like a hysto inless its essential x thanks for your advice, depending on what happens next i will probably email the consultant directly with any auestions x i’m trying to stay positive that the mri came back really clear so that even if the margins arent clear from this LLETZ then hopefully the most i will need us a hysto x thanks again and i hope you’re doing well these days x

please ignore all the typos!!

Hi, 

So a question of waiting for the results of the Lletz. I agree that you have every reason to  be positive. 

Don't hesitate to ask your questions though and perhaps let us know how you get on and it is all useful information for ladies on this forum. 

I am doing fine thankfully,  3 month checks. 

Best wishes to you and I hope you are a bit more reassured. 

Serena x

Yes i feel abit better about it all x will just see what the 2nd LLETZ says, she said they go by both national and trust guidelines so may be different to other trusts x i’m going to try to switch off from it for 2 or 3 weeks until the bioosy comes back but it helps to know atm its still 1b1 and mri all clear x i think oart of the probken is that research etc is coming in all the time so for example, it was thought that laparoscopic hysto gave a higher chance of recurrence but that seems to have changed again esp if had prior conisation so people who had treatment 4/5 years ago or in a different country may have been told something different x glad you’re doing well, thanks again xx

Hi Seffie,

I just saw your update and think it’s great news I’m glad you have had a second LLETZ.

I know you have said that other people with 1B1 have had other treatment but remember everyone is different and you will be monitored after the LLETZ.

From my diagnosis my gynocologist did say another LLETZ may remove it all but as I wasn’t having children and I had already had 2 LLETZ They thought hysterectomy would be better.

Hope you are feeling better xxx

Hi Chloe thanks so much for your lovely message, its kind of annoying that i want to feel relieved but the worry that they might only do 2 LLETZ for 1b1 is scary as i havent seen this for anyone else at this stage tho interesting to see that might have been an option for you, can you remind me what stage you were? apparently after the 1st LLETZ the MDT did advise hysterectomy as it wasnt a clear margin but the nurse said they didnt realise i had only had one LLETZ then as the mri showed no tumour or spread they want to try a 2nd LLETZ which considering i’m 61 seems odd x however i am pleased that its still 1b1 and the mri was clear altho of course i’m thinking what about tiny cells that it cant pick up?! so yes still anxious about it all but feel better that its still very early x i think i will end up with maybe a simple hysterectomy esp at my age but i know you can still get recurrence with that so we’ll see x i have done loads of research into anticancer diet and lifestyle and boosting immunity to help with hpv so will do everything i can to stay healthy x hope you’re doing ok x thanks again xx