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  • Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical glandu

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    Old 09-21-2008, 06:04 PM   #16
    DiamondLight
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Quote:
    Originally Posted by CatherineElise View Post
    Hi!
    Thanks for your response! What did the LEEP and Cone show/the pathologist's report?

    Thanks!
    Kristen
    Me? I don't have the pathology reports on the leeps (yet), but the cone pathology report states "CIN3". My doctor said I had "CIN3 with glandular involvement". That was all in 2001, BTW. I'm having some issues now (abnormal periods or bleeding), but he doesn't believe it's related. Who knows, at this point.

    Edit: I know the leep reports confirmed it though, I just can't remember exactly what they said.

    Edit: He said I needed a hysterectomy (at some point durning all of that), but he let me go w/other treatment. I thought, it went leep, cone, leep...but it probably was leep, leep, cone? I'm trying to get that straightened out now. :P

    Last edited by DiamondLight; 09-21-2008 at 06:23 PM. Reason: Add more

     
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    Old 09-21-2008, 06:45 PM   #17
    Pickle Eyes
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    It is a really good idea to get copies of the pathology reports so you know when procedures occured and what the results were. It will help you understand what has happened and what the future options are.

     
    Old 09-21-2008, 07:08 PM   #18
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Quote:
    Originally Posted by Pickle Eyes View Post
    It is a really good idea to get copies of the pathology reports so you know when procedures occured and what the results were. It will help you understand what has happened and what the future options are.

    Thank you and I agree, I'm trying to get them now. I requested them and picked them up at my last visit. However, I only received four of them...two paps (I believe), one biopsy and one cone. Oddly, there wasn't anything for a leep. I know I had one...in fact, I had two. That's what was driving me nuts at the time...kept getting positive margins. I'm going to call Monday and find out why they weren't included.

     
    Old 09-21-2008, 11:12 PM   #19
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Thanks for sharing your experience, Diamondlight. It is so helpful to hear other scenarios... it really helps me understand better.

    One thing I do know is that in 'doctor language' they often refer to LEEP biopsies as a cone biopsy. For example I complained that my report said I had 2 cone biopsies when I know I had 1 LEEP and 1 Cone... but the gyn/onc and ob/gyn said 'we refer to a LEEP as a Cone interchangeable'... who knew?

     
    Old 09-21-2008, 11:54 PM   #20
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Quote:
    Originally Posted by CatherineElise View Post
    Thanks for sharing your experience, Diamondlight. It is so helpful to hear other scenarios... it really helps me understand better.

    One thing I do know is that in 'doctor language' they often refer to LEEP biopsies as a cone biopsy. For example I complained that my report said I had 2 cone biopsies when I know I had 1 LEEP and 1 Cone... but the gyn/onc and ob/gyn said 'we refer to a LEEP as a Cone interchangeable'... who knew?
    You're welcome.

    I've heard that before too, but my doctor doesn't use the terms that way. The two leep were done in office, under local anesthetic and with an electric loop. The cone was done at the hospital, under general anesthetic and with a knife/scalpel...whatever they use. Lol.

     
    Old 09-22-2008, 12:09 AM   #21
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Ahh, I found a clue. After looking over my cone (one done in hospital) report again...I notice "Severe Squamous Cell Dysplasia (CIN3), the lines of excision are negative for dysplasia" AND "Changes consistant with previous biopsy site". That "biopsy" mentioned, had to have been from one of the leeps...because the only other true biopsy I had (punch biopsy, think it's called?) came back fine. If they were going by that biopsy, it would not say "consistant".

    Edit: My one (have two) AGUS pap report has a handwritten note stating "Needs LEEP". That was written on 8/7/01 and my cone (hospital) was on 12/11/01. So, at least, one leep was between those dates...probably both? I'll find out details tomorrow.

    Last edited by DiamondLight; 09-22-2008 at 12:21 AM. Reason: Add more

     
    Old 09-22-2008, 09:24 PM   #22
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Weeeelllllll, a LEEP cuts out a cone sliced piece of the cervix, but it does it with the wire. It cauterizes the edges of the tissue (biopsy and intact). The cold knife cone uses a knife to cut the wedge.

    The tissue removed from a cold knife cone (CKC) biopsy has readable margins. The margins from a LEEP are burned/singed so the pathologist can't always tell if the margins (on a lesion) are lear or not. They *can* be seen on the CKC biopsy.

    LEEP can be done in office or in the hospital. Cones are done under general anesthesia.

    At least that's how I understand it.

    Last edited by Pickle Eyes; 09-22-2008 at 09:25 PM. Reason: spelling

     
    Old 09-23-2008, 06:44 PM   #23
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    CatherineElise, can you please tell me where you've found information that a pap smear taken during a period might cause ACG? I had a pap on 8/21, which happened to be the middle of my period. I do not believe I've ever had a pap during a period before. Anyways, like most of you with AGC results, I'm freaking out. I had a colpo and ECC yesterday. The dr sure scraped the heck out of me, but I feel confident if there's anything bad in my endocervical canal, it will be found. If not, I guess we'll go to other measures to figure out why this appeared on my pap. I'm nervous, to say the least.

     
    Old 09-23-2008, 07:01 PM   #24
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Hi Robyn. How are you doing post colpo/ecc? I was sore, but only for a few minutes after mine. When will you get your results back?

     
    Old 09-23-2008, 07:18 PM   #25
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Very sore after the colpo today! This isn't the 1st colpo I've had (had one 9 years ago and the other about 3 years ago), but during previous colpos/ECC's the ECC was just a quick scratch. This time, WHOA! She scraped and scraped and well, scraped some more during ECC. It was traumatic. Results on Friday. : 0

    Pickle, I've read a little of your posts...but not sure, were you diagnosed with AIS or full-blown adenocarcinoma?

     
    Old 09-24-2008, 05:20 PM   #26
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    My doctor scraped a lot with the ECC, too.

    My ECC diagnosed AIS. I then had a cold knife cone biopsy which diagnosed adenocarcinoma Ia1. In the biopsy from the cone I had ONE lesion that was 1.6mm wide and 1mm deep (a dime is 1mm thick). I then went to a gyn/oncologist. She did another cone biopsy the day before my hysterectomy (uterus and cervix only) back in June. The second cone biopsy showed another lesion (but only 1) which was less than 1mm across and 1mm deep. There was "no sign of residual tumors" in the tissue removed during the hyst. So both cones got all of my cancer before the hyst. Thank God!

     
    Old 02-07-2009, 12:53 PM   #27
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    Red face Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Quote:
    Originally Posted by CatherineElise View Post
    Hi Pickle Eyes. Funny it's 3am and I got back from Houston at 5pm today... woke up to write an email to a friend and thought you may have written and voila!

    My experience at MD Anderson was GREAT! I could go on for a while about it but I need to get back to bed... I meet with nurse, nurse practioner and a doctore at the colposcopy clinic. The doctor did a colposcopy and thought my cervix was 'interesting' (ha!ha!)... she said it was significantly scarred (yep.) but the way to scarred was different ...apparently we all scare differently... I have psorasis and super red patchy skin in several areas which may cause redness in scarred areas on my cervix. She thought these scarred areas may be inferred as lesions by other doctors. Her 'gut' was that I will not need any surgical procedure but to be certain they took additional biopies and will be testing my July irregular pap (AGUS) slides again at MD Anderson. Results to come in towards the end of next week. I am super hopeful. If the slides come back fine just another checkup in a few months... if there is something there... I go back next month.

    The trip cost me $1300 (!!) (i have to meet a deductible first) but I feel so good about having gone down there. I will certainly let you know the result. Thanks for hanging in there with me. Hope things are A-OK with you!

    as an aside... one interesting thing I learned is that sometimes AGUS cells on Paps are normal.. and show up when the pap is taken near your period (which my June one was)... still not discounting it's potential for significance.

    Hi there gals!

    Was just reading some more posts on this matter and I came across Catherine's little tid bit about AGUS showing up on a pap (if it shows up) close to one's period. IS THIS TRUE? GAWD, I SURE HOPE SO. I just had my year follow up pap from my cone, still don't have the results, but I had the pap about 3 days before my period. Please, please someone tell me that I did good by having this pap test so close to my period. So that maybe if it has come back at least the pap picks it up!!

     
    Old 02-08-2009, 02:46 PM   #28
    CatherineElise
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    Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl

    Hi!

    Good luck with your results. I really have NO answers for you. I'm sorry. One thing that was pounded into my head after this experience were the words of my OB/GYN 'medicine is an art, not a science'. This is my short answer to you.

    They really only know anything definitively by getting results on slides and very often those are extremely difficult for pathologist's to interpret. If they have uncertainty about the results... (if your doctors were like the ones I had...) they will test and test and test again. I do STRONGLY recommend going to the best GYN/ONC that you manage to afford/travel to. They vary widely. Ideally you'll one associated with a large research hospital -- that has a group of doctors with the same specialty (not just one GYN/ONC in one oncology practice). You also want to have your slides reviewed by a pathologist who ONLY see GYN slides. Here in Austin, all GYN/ONC slides are sent to a group of pathologists that see slides with all sorts of biopsies (liver, kidney, lung, gyno, etc). Also it is ideal for ONE pathologist to review all of your slides. Again, here in our 'one-horse' medical town, Austin, Patient A's slides may bounce from pathologist A to B to Z in a matter of weeks/months. It just adds to the already complicated procedure.

    Sorry for my long-winded response. I hope a little is helpful.

    Again, good luck and I definitely hope they don't see ANY trace of ANY irregular cells on your pap.

    ALSO, if someone says "surgery" to you again, get a 2nd and 3rd opinion! No doctor cares about you like you do ;-) Listen to your instincts.

    Best
    Kristen
    (ps my kids are Catherine and Elise)

    QUOTE=bonesygirl;3877595]Hi there gals!

    Was just reading some more posts on this matter and I came across Catherine's little tid bit about AGUS showing up on a pap (if it shows up) close to one's period. IS THIS TRUE? GAWD, I SURE HOPE SO. I just had my year follow up pap from my cone, still don't have the results, but I had the pap about 3 days before my period. Please, please someone tell me that I did good by having this pap test so close to my period. So that maybe if it has come back at least the pap picks it up!![/QUOTE]

     
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