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  • New here and need insight (HPV-negative ASCUS, AGUS, CIN/LSIL)

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    Old 02-10-2011, 09:15 AM   #1
    nicandjethro
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    New here and need insight (HPV-negative ASCUS, AGUS, CIN/LSIL)

    *deep breath*

    Okay, let's see... Hi, everyone! My name is Nic, and I am a 36-year-old work-at-home (Medical Transcription/Editing) mom of 2 wonderful kiddos (4 and 7). I am also a prenursing student hoping to get that acceptance letter in the next month or two and be on the floor as an RN by the end of 2013.

    I've just discovered this forum recently after doing several searches for information regarding my abnormal Paps and colposcopies. Having other women to talk to about these things is such a blessing, and it's so wonderful to know that there are so many women out there who are educating themselves about their diagnosis. Having that type of insight gives you SUCH an advantage to working with physicians and finding answers. Since doctors are people, too, they sometimes need that extra PUSH from their patients to dig a little deeper. Going into their office with KNOWLEDGE about your diagnosis lets them know that they need to be on top of their game.

    Okay, okay... Now for the nitty gritty...

    Pap 2007: Normal

    Pap 2008: LGSIL

    Colpo & ECC 2008: LGSIL/CIN 1 (2 spots), endocervicitis (1 spot) / Benign proliferative endometrium - High-risk HPV NEGATIVE

    Pap 2009: ASCUS

    Pap 2009: Normal

    Pap 2010: ASCUS-H

    Colpo & ECC 2010: LSIL/CIN 1 (2 spots), acute and chronic cervicitis / Benign glandulostromal tissue, predominantly endometrial

    Pap 2011: ASCUS & AGUS

    =========================

    When my doctor called me back after the finding of AGUS, she said that she would need to contact the pathology lab as she hadn't seen this come back on a path report before. They pulled my Pap slides and discussed the findings again. The lab tech said that there, indeed, was AGUS, but that they didn't look incredibly abnormal - just "fatter" or something like that.

    My doc said, "If your HPV was positive, this would be an entirely different ballgame. I'd be scheduling you for surgery."

    I've drilled her over and over about the potential of a low-risk strain of HPV causing this or a strain that isn't tested for when they test for the high-risk strains of HPV. She's confused, also, as to why I keep showing all of the abnormalities and dysplasia without a diagnosis of HPV.

    Our game plan for now is this: RETEST the Pap she just sent for HPV.

    IF NEGATIVE FOR HPV: Proceed with another colpo, ECC, and endometrial biopsies

    IF POSITIVE FOR HPV: Proceed with LEEP or cold knife conization


    Here's my dilemma... SOMETHING is causing this. SOMETHING is making this "not go away" - do I ask her to be aggressive and proceed with the cold knife, regardless (especially due to the AGUS)?

    *I talked to her about thermal effects on margins with LEEP or laser, and when I mentioned cold knife conization, she said, "It's pretty much the same in terms of overall procedure/removal, so if you'd prefer for me to do the cold knife, I will." She told me a little about the thermal effects, too.


    I'm so incredibly nervous that something will be overlooked, and with the AGUS showing up now, I'm that much more nervous.


    After reading all of this (bless your heart if you did!), what would you do?


    **On a side note, I also have leukopenia (a chronic low white count). I've had a bone marrow biopsy and have been ruled out for all sorts of autoimmune disorders (HIV, lupus, cancers, etc.) I've been this way for years, but I'm wondering if my low white counts can affect me being able to "self correct" cell abnormalities - like the dysplasia.**

    Okay. NOW I'm done.

    Thank you all in advance for any advice!!!
    Nic

     
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    Old 02-22-2011, 01:57 PM   #2
    nahi
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    Re: New here and need insight (HPV-negative ASCUS, AGUS, CIN/LSIL)

    Hi my name's maria I have also been diagnosed with agus . She will proceed with the cold knife I don't want my uterus to be removed. It is surgery and noone wants that. A friend of mine said you should better remove ur uterus and forget about the problem it is not her uterus it is mine. As urs is urs. So I guess doctors shoudl try to do everything possible to remove abnormal cells and that is it. Why going through such a thing if we are healthy. We just have a little problem. I know that if there is any cell going up it is better to save ur life. But that is a last resource. I send out my heart to you. I guess we are on the same boat feel free to write to me anytime
    hugs
    maria

     
    Old 02-22-2011, 02:20 PM   #3
    Kali333
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    Re: New here and need insight (HPV-negative ASCUS, AGUS, CIN/LSIL)

    nahi- don't worry, they won't remove your uterus for this problem.
    They'll just remove some abnormal tissue from your cervix.
    You should still be able to get pregnant and all that.
    I wouldn't even consider hysterectomy for the problem you have... that's like killing a housefly with a machine gun.


    Good luck to you both, ladies!

     
    Old 02-22-2011, 03:18 PM   #4
    nahi
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    Re: New here and need insight (HPV-negative ASCUS, AGUS, CIN/LSIL)

    but agus is atypical glandular cells of unknown significance coming from my cervix. I was just wondering is that cancer? Went to two doctors and they said if there are some atypical glandular cells the uterus needs to be removed. I know I am old to have kids since I am forty five. Went for a vaginal ultrasound and the doctor said it was excellent the only problem was the pap smear which showed atypical cells of unknown significance coming form cervix and some outside cells were showing atypical changes like macrocariosis. I am so concerned. I love my uterus even though I cannot have children due to my age but glandular cells are a concern aren't they
    hugs to all
    thanks for ur answers

     
    Old 02-22-2011, 03:31 PM   #5
    Kali333
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    Re: New here and need insight (HPV-negative ASCUS, AGUS, CIN/LSIL)

    I sure do wish we could post links.
    From what I've read (from a reputable medical website), an AGUS PAP means you'll be referred for further evaluation.
    20-40% of women with an AGUS PAP will have moderate to severe dysplasia, with lesions high up in the cervical canal.

    If you're not menopausal yet (which I assume you're not, at 45), then an AGUS PAP doesn't really mean anything about your uterus.
    For menopausal women, an AGUS PAP can mean uterine cancer. But not usually for women your age.

    I'd say at worst, you might have moderate to severe dysplasia in your endocervical canal. This can be treated with LEEP.
    There's no reason to consider a hysterectomy, unless they say you have cancer, which I doubt you do. there's no reason to suspect you do at this time.

    Just do lots of research.
    Good luck!

    Last edited by Kali333; 02-22-2011 at 03:32 PM.

     
    Old 02-22-2011, 03:50 PM   #6
    nahi
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    Re: New here and need insight (HPV-negative ASCUS, AGUS, CIN/LSIL)

    Thanks Khali for your nice support. I am so concerned. My leep is scheduled for next Sat and tomorrow I am seeing my gyn again. She said my problem was cervical and vaginal. I was just wondering why these abnormal things don't show up on the endovaginal ultrasound. I do four a year. My mom died at forty seven cause she did not want surgery. I am not menopausical but during the last years I have noticed changes in my periods. Sometimes I would skip one or so and the bleeding is not the same as when I was in my thirties. they performed two biopsies and my doctor will talk to me about them tomorrow. Also I have been feeling pain on my ovaries which will mean if my period comes before saturday I won't be able to have the leep. I am also scared about bleeding abnormally during this procedure. The doctor said she will do it in a surgery room with sedatives. On Thrusday I am going to see my cardiologist cause I have a congenital disease on one of my heart valves. I always have check ups due to this. I have been having pap smears twice a year since twenty. I had a pap smear back in june last year and after seven months they find these abnormal stuffl I also have a vaginal thing which is of no importance. But she said she will have to burn it as well
    scared to death. God Bless you for ur answers

     
    Old 02-22-2011, 04:07 PM   #7
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    Re: New here and need insight (HPV-negative ASCUS, AGUS, CIN/LSIL)

    Good luck, nahi.
    Post after your appointment and let us know how it goes.
    I'll be sending positive thoughts your way.

     
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