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  • Do I need to freak out just a bit here?

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    Old 05-25-2012, 12:45 PM   #1
    kis348
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    Do I need to freak out just a bit here?

    Hello everyone!

    I'm a bit of a lurker around here, most certainly in the last week or so. My situation isn't much different than lots that I've read about here, although I still have a question/some confusion.

    Here's a summary of what's been going on:

    Around 1999-2000, I had two abnormal paps in a row. My Dr sent me for a colposcopy and to be honest, I remember little about the details. I know my dysplasia was moderate, and it was treated with a laser (Leep? They only referred to it as The Laser"). The Dr told me that at some point I had contracted HPV, and that's what had caused the dysplasia. He told me to go back in three months for a follow-up. I had little knowledge of HPV back then, and didn't understand how important follow-up is. Needless to say, I didn't.

    Around 2002-2003, I had an abnormal pap and another colposcopy. I believe I had mild dysplasia that time, and it was again treated with a laser. I was at a different hospital this time, with a different doctor than the first time in 1999-2000. Again, I missed the follow-up.

    In 2004 my daughter was born, and in 2005 my first son was born. I'm not sure why, but my Dr tested for my HPV strain when I was pg with #2. She told me that I had Type 16, explained the risks, and said that we'd "have to keep our eye on it".

    In 2007, I had my third baby. My Dr did a pap early on in the pg, and it was normal. In 2009 I had another abnormal pap, and mild dysplasia treated with the laser. When he was finished, the Dr asked me if I smoke. I used to, but I quit in 2006, when I was two months pregnant with my daughter. I explained this to him, and he said, "then why do you keep getting this?" Uh..haha? Needless to say, once again I missed following up.

    Forward to present day. In April, I finally had my first physical after three years. While my Dr was doing my pap, I mentioned my high-risk HPV strain, as well as the gynocologist's rather cavalier attitude about the dysplasia recurring. While it can be tough to get, my Dr sent in a referral for me to see another gynogologist. I was fortunate to get an appointment the next week due to a cancellation. I met with the new gyno (love her), she did a quick colposcopy (saw a "bit" of white with the vinegar) and a biopsy. I made my follow-up for four weeks later (*pats self on shoulder).

    A couple of weeks later, my GP called to say that my pap was "absolutely normal", and it was "great news". Cool. When my gyno's secretary left a message saying that she had to reschedule my appointment for my follow-up, I was less than concerned. I figured that a normal pap meant my biopsy had to be normal too, and that going back wasn't really necessary. When the secretary called me back three times to reschedule, I figured that I had better just go in. It wasn't so bad, as she was able to get me in only five days after the original appointment had been scheduled...

    Oh.

    So this time we're looking at CINIII, severe (is there actually a grade III that is considered not severe?). She said the area is small, but it needs to be taken care of, obviously. I think I was a bit stunned (had NO idea one could have a normal pap and abnormal biopsy) and when she said the treatment involved cutting a "cheerio-shaped" piece out, I assumed she meant the laser again, and didn't bother asking. *ETA: After futher reading, I'm now thinking that she's sending me for a cone biopsy? She specifically said they'd be "cut(ing) out a "cheerio-shaped piece". She said I would have numbing, but not be asleep or sedated at all. Basically, it sounds exactly like my other procedures with the laser. I nodded and smiled a lot, and was out the door in five minutes. She told me that if I hadn't heard from the hospital in two weeks with my appointment date, then I need to "chase (them)".

    Alright. So now that I'm over the "holy crap - bullet dodged" thing, I'm now beginning to contemplate the "how long have I had dysplasia" thing. And the "what if they can't see it all" thing. Ugh. My big questions are these:

    1. Is it possible that the CINIII has already progressed to cancer, and they just don't know it yet? My gyno kept saying, "you DON'T have cancer" (I wasn't worried that I did...then), and I have to assume that she wouldn't have said that if there was a chance that I did, right?

    2. When they remove the abnormal cells, is there any kind of real chance that I'll find out anything has progressed to anything beyond CINIII? I've always assumed not (to a fault, obviously), but now I'm not sure of anything. I honestly didn't expect "high-risk" to actually mean anything other than the occasional colposcopy. :/

    3. I'm going to be 43 in July. Any idea just how many bits and pieces they can burn and cut out before they decide to just take the rest? If it makes any difference, I'm in Ontario, Canada.

    I guess that it's for now. If you've come this far with me, thanks. For what it's worth, I'm not completely ignorant when it comes to my own health care. I truly didn't understand what having HPV really meant, esp this variety.

    Regards,
    Christine

    Last edited by kis348; 05-25-2012 at 09:10 PM. Reason: Further info

     
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    Old 05-25-2012, 01:52 PM   #2
    blastoffgirl
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    Re: Do I need to freak out just a bit here?

    I am new to this board, but read your message and felt like I should respond. I have had a series of bad paps due to HPV and this last pap came back as AGC of unknown origin. I will tell you that I ran, not walked, to a gyn/onc since this type of pathology is rare, although HPV is not. I have realized that until they do another more in depth biopsy (I am getting a cone biopsy and D&C) the diagnosis for cancer has not been ruled out. The key is to stay on top of these things and visit with your gyn every 3-6 months until that pap is clear. Unfortunately, the virus can be re-activated and decide to show up again - no one knows why really. I would urge you to call your doctor and ask him/her these thngs, find out why a LEAP is being done over a cone biopsy since it seems like you are sliding to carcinoma in-situ, which means cancer but localized. Have you seen a gyn/oncologist? You should schedule that RIGHT AWAY and bring your path report! Once the biopsy is done, the gyn/onc will make a judgement call with the surgical pathologist to determine the next course of action. This stage is not something you can brush off and not be worried about - this diagnosis means, at this point, that something is changing toward malignancy, very aggressively and it needs to be taken out pronto. I had three additional biopsies done after my pap came back high risk - have you had any other biopsies done to date? Have you had a uterine biopsy? Endometrial biopsy? I am really surprised that they are telling you this is no big deal - at this stage, either a LEEP or a cone biopsy needs to be done to remove the tissue, and only then will they make a judgement call as to whether or not it is CIN. It is not cause to be completely freaked out since you are top of it, but I think it is time to see a gyn/onc who has more experience with these types of things and takes more seriously. I too am 41 years old, and have had a bad pap, history of abnormal uterine bleeding and positive HPV, and I was told to RUN not walk, to a cancer specialist.

    Best of luck

    I would

     
    Old 05-25-2012, 01:57 PM   #3
    blastoffgirl
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    Re: Do I need to freak out just a bit here?

    And one more thing to your question about how many bits and pieces they will take out: The best person to make this call is an gyn/onc since they have much more experience with these types of issues. You can discuss with your Dr how much needs to be taken out from this point on. Personally, I am getting the cone biopsy done - if it comes back CIS or any other high risk diagnosis, I am asking for it to be comepletely removed - hysterectomy but no oophrectomy. I have had my children, I do not need to take the risk at my age for this type of isse. I hope that helps.

     
    Old 05-25-2012, 03:06 PM   #4
    kis348
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    Re: Do I need to freak out just a bit here?

    Thanks for your reply, blastoffgirl!

    I guess I wasn't very clear; I do have a gynocologist and she's the one who did the colposcopy and diagnosed the CINIII this time. The biopsy was done in April. This gyno is also the one sending me for the treatment (she doesn't do it; she's sending me to the hospital colposcopy unit). I know it's either a leep or a cone biopsy (again, she referred to it as a "cheerio-shaped" piece of the cervix). She's taking it very seriously, and I feel quite confident in her abilities. I'm the one guilty of not taking things seriously. As for seeing a gyno-oncologist, that would require another referral, and probably a dx of cancer. I know things are a bit different in the states (assuming that's where you are?), and a pathology report is something that would go from my dr to a specialist. It would be unusual for me to have a copy without specifically requesting it, and if I went to an actual oncologist on my own, they'd turn me around and tell me to come back with a referral. They'd probably laugh at me too :P.

    Again Blastoffgirl, thanks for your reply! I'm sorry you've had to deal with all of this too, and I wish you the very best for any future tests.

     
    Old 05-27-2012, 03:24 PM   #5
    VPK
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    Re: Do I need to freak out just a bit here?

    Hey there, I just thought that I would let you know that two weeks ago I had a LEEP done because about 2 months ago I had an abnormal PAP and tested positive for hr HPV and then had a colopscopy that came back as CINIII. There was about a week between my colopscopy and LEEP and I was thinking the exact same things as you are..."what are the chances that this has progressed to cancer?" and so on....I was happy to find out that when my results came back from my LEEP they actually said it was CINII (moderate). So, I was very happy to hear that it was less severe then they had originally thought....though I was very concerned that it was going to be worse. Just hang in there and realize that chances are they took a very thorough biopsy with your colop and know what there is to know already. As far as what type of procedure you are going to have I don't know....I think that as long as the mutated cells are confined to the surface of the cervix and not in the canal (if they said CIN I am pretty sure that just means the top/surface of the cervix, otherwise they would have used a different acronym to describe your condition) then you will probably just have the LEEP done. not sure though....best of luck to you...and this is probably no worse than anything you have already gone through.

     
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