Conflicting biopsy results - confused and scared (children mentioned)

Cervical screening results
1

Hello to all of you beautiful, brave and inspiring ladies.

I have been reading these forums for a few weeks alongside my investigations for my abnormal smears and, before I launch into my story, can I just say how wonderful this forum is and how comforting it is to see the support provided on this website to ladies at all stages of their cervical journeys. 

My story started back with my first smear at age 25 (I'm now 29) which showed mild dyskariosis. I went for colposcopy then and the consultant reassured me that he couldn't see anything worrying and didn't even take a biopsy. Fast forward a few years and my last smear came back the same - mild dykariosis. So off I went again to colposcopy at the end of July 2013. This time it was at a different hospital in Cheshire and the lovely nurse colposcopist thought she saw an area with higher grade changes than suggested by the smear so she took a biopsy. This came back with mild to moderate dysplasia, up to CIN 2. The worrying thing was that it also reported some cells which were "suggestive of but not diagnostic of high grade CGIN" also. Was quite shocked as I know this is a rarer finding and not as easily dealt with so I was upset at this result. To complicate things further, the week after i got the results I was getting married and emigrating to New Zealand! So obviously, it was not the right time to undergo treatment for this and they advised me to get it sorted as soon as I got to NZ.

So I took a copy of the histology report to a good gynaecologist here in Auckland and he told me that, on the basis of the UK histology report, I would need a cone biopsy under GA. I could have cried. However, he decided to take a look himself first and to take more biopsies and a repeat smear for completeness. This time, he also took an endocervical brush to see if he could confirm the high grade CGIN that the UK biopsy suggested. 

SO, I waited on tenderhooks for a week for his phonecall and when it finally came I was a bag of nerves. However, the biopsies, smear and endocervical brush that they did here show CIN 1 only and no evidence of the high grade CGIN! Currently, the gynaecologist here is getting in touch with my hospital in Cheshire to request their slides so that he can take a look at what they saw. 

Sorry for the really long post but I had to get it off my chest. I am far away from home and don't have any close girl friends here yet that I can talk to about it all. As you can imagine I am now very confused about where to go from here. Do I need a cone biopsy or just a LLETZ? Why could they not find the CGIN here - surely if it was there it would have shown up on the endocervical brush? I really don't want to have a cone biopsy if I don't need one as I am newly married and will be looking to start a family in the near(ish) future and would be so worried about losing alot of my cervix. Obviously though, if the CGIN is there then I need to just get it done. AAArgh I am so so confused :( :( 

Just have to wait I guess until they get the results from the UK but then which biopsies are they going to base my treatment on? I hope there isn't CGIN there as this is all taking a long time to sort out so I have anxiety about that too :( 

Has anyone else had conflicting information like this?

Apologies again for the length of this post and thank you to anyone who has continued reading to this point!

Also, thanks again to you all for being so wonderful, I love this website, it has kept me sane over the last few weeks.

Love,

Belle

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Oh you poor lady, what a palava!!! I am unable to help you other than to say I have read all the way to the end and I send you my love- hope this all gets sorted for you soon. Dons xxx Ps jealous of ur move to NZ, love it there x

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Thanks you so much Dons, you are such a lovely lady, I have been following your posts since your diagnosis. You are such a fantastic support to everyone on here. 

I hope your cold goes away before you op and I will be thinking of you all day on Tuesday hoping and willing everything goes well with your hysterectomy which I'm sure it will. I wish you the speediest of recoveries afterwards, looking forward to your posts when you are all better. 

Keep your lovley sunny positive attitude throughout and you'll fly through this.

Lots of love and good wishes,

Belle xxx

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Hi Belle,

Congratulations on your move. I know what it’s like to be an expat or new to a new country and forums like this provide an enormous support.
I hope you can get to the bottom of everything. I was diagnosed with CGin and Cin2, not that I would know this as 7 weeks later I am still waiting for a letter. However phone calls to the secretary have put my mind slightly at ease as it has come back no malignancy. I had the cone biopsy and lletz treatment during a treat and see consultation. My smear had Coe back with glandular cells detected so I thought that there would be some treatment. I had it all done under local anesthetic there and then.
My understanding of CGin is that it can ‘skip’ layers of tissue so can’t always be detected. That might be why your gynaecologist has asked for the results from the uk. I am off to see the consultant tomorrow to discuss my biopsy results and the question I want to know is how do they know if they have everything.
Good luck with any treatment out there. My understanding is that it is still possible to have children after the cone biopsy but check with your consultant again.
Love from the uk x

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Those were extremely kind words, thank you

. I try to reply to lots of ladies who I think I might be able to make feel better somehow as it helps me to feel better and keeps me busy in this worrying time (purely selfish reasons then really lol!,). I think this website is great for helping people not feel so alone or unusual. It has helped me put a face on cancer and the treatment ahead far better than cold hard clinical information documents. I hope u find the help here u need too x

I'll update after Tuesday (from my hospital bed if wifi works!!!!!!) Don x

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Hi Helen,

Thank you so much for your reply, it has really helped. I'm glad you got yours all sorted in a timely fashion, nice to have the treatment under local anaesthetic too, I really don't want a GA! I'm still waiting to hear from my consultant here to see if he managed to get the histology slides from the UK. I hope it doesn't take too much longer! I will ask him again about cjildren after a cone.

Thanks again so much for your supportive reply, this website is just perfect :)

 

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Hi Belle,

Glad I could help :-) I saw the consultant and she said that she is confident that all cells have been removed and she will see me in 6 months time to check on the cells.

I asked her if the cells reoccurred would I be considered for a hysterectomy, she said that is not something that they are considering at the moment. She did ask if I wanted anymore children so with that in mind a cone biopsy means that you are still able to have children. I have read that sometimes they need to put a stitch in your cervix when you fall pregnant. A friend of mine has an incompetent cervix and she had to have that and she was fine.

I hope you are able to get your results sooner rather than later xxxx