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Old 12-29-2011, 01:12 PM   #1
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bammy87 HB User
Adenocarcinoma in Situ - recurrence after a cone?

Hi,

I was diagnosed with adenocarcinoma in situ this past August and had a cone biopsy performed by a gynecological oncologist in September. The results had negative margins and he concluded that it was just CIN-3 (although the initial biopsy (2 different biopsy locations) said adenocarcinoma in situ on the pathology report). He has scheduled me for a pap in April, but I'm worried that the AIS will return before then. Has anyone had AIS come back after having a cone biopsy? I'm only 23 and worried about needing a trach/hyst or the cancer becoming more invasive. Also what are the chances that this was actually only CIN-3 and not AIS? I've heard that the bad cells can "hide" and not be discovered with a cone.

Thanks!

 
Old 01-01-2012, 03:33 PM   #2
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jennaleigh HB User
Re: Adenocarcinoma in Situ - recurrence after a cone?

I also was diagnosed with AIS last March. I had the cone biopsy in April and the results were negative margins. At my last follow up however, my colposcopy showed Atypical Glandular Cells of an unspecified cause and now I'm freaking out that the AIS is back. The worst part is that I can't get a hold of my doctor and no one will give me any answers until my appointment which is in February.

I'm 21 so I know how hard it is to face all of this so young. All of the doctors I have seen have told me I'm the youngest patient they've seen with AIS.

When my doctor was explaining to me the chance of recurrence, she told me there was only a 10% chance but at the same time, i shouldn't wait too long to have children which sort of contradicts everything. I really hope everything works out for you and I'm here to chat if you need to or have any other questions.

 
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Old 01-22-2012, 09:34 PM   #3
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waterstrider HB User
Re: Adenocarcinoma in Situ - recurrence after a cone?

I also had recurring AIS after cone biopsy, but not for many years. I had a cone with negative margins, waited 5 yrs (with a lot of monitoring by endocervical curettage - ECC), then had 2 kids before my AGUS came back. Dr recommended hyst then, even though only AGUS was indicated. I had a hyst in Oct and path results came back AIS again. I'm told it should be gone for good now, but I'm still dubious! Part of my decision to go with the hyst was the knowledge that AIS is hard to detect. I had a feeling there was more there than just AGUS, but they can't really tell until they've taken it all out. Lucky for me, I'd already had my kids. You could have some tough choices to make. That's the worst part really. The hysterectomy wasn't all that bad at all.

The difference between CIN3 and AIS is in the origin of the abnormal cells. I'm not sure how they would be able to say you had AIS and then say it was just CIN3. What was the procedure that initially diagnosed you with AIS? ECC? As long as the cone was taken high enough up into your cervix, the cone results would probably be more accurate than the ECC or colposcopy (I read that colpo is not effective at detecting AGUS or AIS). I guess with your results I might be worried that the cone missed the AIS entirely and only detected abnormal squamous epithelial cells. But I'm no doctor. Definitely something to ask about! Thinking of you, and hoping its not serious!

 
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