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  • Atypical Glandular Cells of Unknown Significance, 43 years old and scared to death!

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    Old 03-26-2012, 06:02 AM   #1
    tmc44
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    Atypical Glandular Cells of Unknown Significance, 43 years old and scared to death!

    Worried! In March 2011 my pap test came back normal but positive for high risk HPV. My doctor told me that the result should be on my low to worry list being that 90% of ALL people will have HPV at some point. Anyway..... Had a pap Feb. 2012 and it came back atypical glandular cells of unknown significance and positive for HPV. I have since had a colposcopy, endocervical biopsy, endometrial biopsy and a cervical biopsy. Endocervial and endometrial came back normal but the cervical biopsy showed mild dysplasia. Dr. will repeat pap in July. I have done A LOT of reading and seems that AGCUS never ends well. I am terrified!!! It is my understanding that AGCUS is rare and that most gyn's do not really know how to treat or diagnose it. The doctors nurse called me with the results and basically implied that I was way overreacting especially when I told her that I wanted an transvaginal ultrasound and CA-125 blood test. I called my old gyn and a onc/gyn who said that my doctor is following proper protocol. Anyone out there with a similar experience. I haven't slept in weeks. I just know that I am going to die. 43 and premenopausal.

    I just don't know if I can live with this!

     
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    Old 03-26-2012, 07:24 AM   #2
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    Hi there,

    I'm going through this as well, except that I'm only 29 years old with no kids (yet) and my pap came back as Atypical Glandular Cells - Favor Neoplasia...so scary! I received this pap result back in January, so I have been dealing with this for a few months now. I also went through a cervical biopsy and actually had two ECCs (one by my regular GYN and one by a Gyn/Onc).

    My regular GYN called with my pap result and just told me it was slightly abnormal and he was bringing me in for a colposcopy. I didn't think much of it, as I had an HPV diagnosis about 5 or so years ago, where I came in for paps every 6 months instead of every 12, and eventually that cleared up and I went back annually. Anyway, after the colposcopy and ECC I got a copy of my pap result and that's when I started freaking out. I spent the next week and a half Googling and worrying that I was going to need a hysterectomy and never have kids. I also made an appointment with a Gyn/Onc, knowing that the pap result can be serious. So when my Gyn called with my results, he said I had a low grade squamous lesion and also Microglandular Hyperplasia, which is a benign condition that is commonly mistaken for Adenocarcinoma in Situ on pap smears. This was the best news I ever could have received!

    I still went to the Gyn/Onc appointment, just hoping the results would be confirmed and I would go on my way to schedule a pap in 3 months. However, she did another colposcopy and ECC, and then announced I needed a Cold Knife Cone biopsy. I was so confused. I asked if she reviewed my previous pathology results, and she HAD NOT. She said based on the pap result, this was what she recommended. I know that the pap result isn't good, but I believe the cervical biopsy is more diagnostic than the pap smear. I asked why she didn't think the Microglandular Hyperplasia was the reason for the pap, and she just shrugged her shoulders...Yeah, I was never going back to a doctor who tried to hustle me into a surgery that could affect my fertility like it's no big deal before she even saw my previous pathology results.

    They wanted me to do the CKC the next week and tried to get me to do all the pre-op testing right there, but I at least wanted to wait for the result of my second ECC. I then had to track her down to get my results (which was also negative). She did say if I was hesitant to get the cone, I could go back for a pap follow up in 3 months, so that's what I'm doing (but not there).

    Anyway, I've done a ton of reading and researching, and what I discovered is that: AGC paps are very difficult to diagnose. Several Pathologists could look at the same result and come to a different conclusion. Second, most of the time AGC pap results actually end up being Squamous cells and not Glandular cells. So, it's very possible that your mild dysplasia caused the result and that's all there is. Third, as I discovered, there are several benign conditions that can mimic neoplasia on pap tests.

    I know any time anyone hears cancer or precancer it's a terrifying experience. But It's important to advocate for your own health and really do research before determining your next step. While I'm still worried that something may have been missed, I'm pretty confident that between two colposcopies, two ECCs and a cervical biopsy, SOMETHING should have come up if AIS was there. And if it was missed, I will have another pap in a few months and go from there. Hopefully, everything will be clear and I can start trying to get pregnant.

    In your case, without even having a qualifier of "favor neoplasia", I would definitely be OK with a follow-up pap.

     
    Old 03-26-2012, 12:14 PM   #3
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    I am a Google junkie! Not a good thing because I keep myself so worked up all the time.
    I am glad that a found this board! There are so many courageous women here
    I have been having bad periods for about two years and begged my doctor for a hyster but he said that he had to follow protocol. Hormone therapy first. I go back in July for my follow up pap. It is all that I think about! I go to bed with it on my mind and I wake up with it on my mind. If I am not thinking about cervical cancer, ovarian cancer or uterine cancer, I am thinking about oral, throat or anal cancer also caused by the HPV virus. It is starting to affect my work and my relationships. All that I can think about is cancer and the possibility of dying.
    I am sorry I don't mean to be such a Debbie Downer.... Just scared.
    It is just crazy how widely different doctor’s opinions are!? Scary!
    The first one had his nurse call me and give me the results as if they were no big deal just come back for a colposcopy and biopsy but when fear set in…….. I ran back to my old gyn who didn’t see it quite that way. I try to eat right, exercise and take my vitamins. Additionally, I take I-3-C as recommended by my gyn.


    I am sorry that you are going through this as well. I would not wish this on anyone. Something tells me that you will go on to have children and live a long happy life.
    Please keep me posted….. I will do the same.

    Last edited by Administrator; 03-27-2012 at 02:22 PM.

     
    Old 03-27-2012, 10:34 AM   #4
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    I totally hear you on the worry! It's gotten a bit better for me, but then I will have days where all I can do is Google and hopefully find that one article that I know is out there that will completely put me at ease! It is tough, particularly with not having a whole lot of info about Atypical Glandular Cells. And even more frustrating is the wide range of findings in studies. They all say that this type of pap have "significant clinical findings" but within articles I have found everything from 9% - 96%!

    I know that the colposcopy guidelines for my reading of AGC - Favor Neoplasia says that unless invasive cancer is found, you need a cone biopsy due to the high probability of a significant finding (I also know this is why the Gyn/Onc I saw said I needed a cone) but with such inconsistency on findings, and the fact that they did find CIN I and the MGH, makes me OK with not getting a cone right away. You're right though, it is scary with such inconsistency with doctors as well!

    I have also been taking lots of vitamins, drinking green tea, and trying to eat well. It's funny, I always thought I had a good immune system because I rarely get sick, but I guess is can come and go.

    It does sound like your doctor is on top of it, and it is good news that your biopsies came back fine! And the fact that you have discussed things with other doctors and they agree with your current GYN is also good. It sucks having to wait and worry, but hopefully you will be followed up and everything will be ok!

    I will keep you in my thoughts, and definitely keep me posted!

     
    Old 03-27-2012, 10:45 AM   #5
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    Thank you! I actually slept last night for the first time in weeks!

    Talk to you soon and God Bless!

    Last edited by Administrator; 03-27-2012 at 02:23 PM.

     
    Old 04-09-2012, 09:18 AM   #6
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    Justing thought that I would stop by and ask you how you are doing?

    I hope all is well.

    Teresa

     
    Old 04-11-2012, 08:42 AM   #7
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    Hey, I'm doing pretty well! I actually have a consultation appointment with a new GYN tomorrow morning, so hopefully that will go well. Fingers crossed that I will have a repeat pap sometime in the next few weeks/month that comes back normal and all will be ok!

    How are things going with you??

     
    Old 04-11-2012, 09:27 AM   #8
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    Best of luck with the new gyn. Let me know how it goes. I am okay. Started thinking about things again the other day and scared myself. I have done toooooooo much reading and researching. Unfortunately, we tend to only read about or hear about the horror stories and with that every ache and pain becoames a symptom. Anyway....... Please keep me updated. Praying for you.

    Teresa

     
    Old 08-01-2012, 06:03 PM   #9
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    Teresa,

    Just wondering how things turned out with your July recheck..Update us if you can!

     
    Old 08-01-2012, 07:08 PM   #10
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    They found some fibroid tumors and with the previous aytypical glandular finding....... The doctor (s) recommended a hysterectomy. I had a total hysterectomy on June 5th. Final pathology showed no cancer in the uterus but there was some moderate dys on the cervix. I no longer have a uterus or cervix but because of the HPV I will still have to have yearly paps on the vaginal cuff.

    HPV is scary stuff!

     
    Old 08-11-2012, 03:02 PM   #11
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    Glad to hear that you didn't have cancer! You must be very relieved! Thanks for the update...

     
    Old 08-15-2012, 12:28 PM   #12
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    Re: Atypical Glandular Cells of Unknown Significance, 43 years old and scared to deat

    Great News.... glad to hear everything turned out OK.

     
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