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Old 06-29-2004, 09:05 PM   #1
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Dysplasia WITHOUT hpv

I hope some of you can share your insight with me. I had a pap 11/03. It came back ASCUS ( low grade dysplasia cannot be excluded). The doc sent it for HPV test. It came back negative in both the high and low risk categories. The recommendation from my doc was to repeat in 12 months. I thought I would go to a gynie instead of my family doc for the repeat and decided to go back in 6 months. Now the test came back LGSIL. The gynie sent me for a colposcopy/biopsy. She took 3 biopsies. Upon examination she said she saw nothing significant. My biopies came back as:1.) fragments of benign hemorrhagic mucoid endocervical mucosa. No endometrium identified. 2.) Biopsy of the transformation zone, fairly well-oriented, showing mild to moderate dysplasia associated with koilocytotic atypia suggestive of hpv. I am confused because the HPV test came back negative and now this suggests hpv. Furthermore, she has offered two options. 1.) a wait and see approach and retest in 4 months or 2.) a LEEP under general anesthesia in a hospital. My question is this...Woudn't I be a candidate for cryosurgery. I have several friends with a similar diagnosis who have had it and successfully been treated. I am feeling uneasy with my gynie. I had the biopsy on the 4th of June, she received the results on the 10th, and didn't call me till the 18th!!!! She has been unavailable to my questions. Her office people keep emphasizing that i have "precancerous cells" and need to do something immediately yet my results sat on her desk for 8 days. I feel uneasy with her and am now getting a second opinion. Does anyone have any thoughts??

 
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Old 06-30-2004, 10:50 PM   #2
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Re: Dysplasia WITHOUT hpv

Quote:
Originally Posted by Verucah
I hope some of you can share your insight with me. I had a pap 11/03. It came back ASCUS ( low grade dysplasia cannot be excluded). The doc sent it for HPV test. It came back negative in both the high and low risk categories. The recommendation from my doc was to repeat in 12 months. I thought I would go to a gynie instead of my family doc for the repeat and decided to go back in 6 months. Now the test came back LGSIL. The gynie sent me for a colposcopy/biopsy. She took 3 biopsies. Upon examination she said she saw nothing significant. My biopies came back as:1.) fragments of benign hemorrhagic mucoid endocervical mucosa. No endometrium identified. 2.) Biopsy of the transformation zone, fairly well-oriented, showing mild to moderate dysplasia associated with koilocytotic atypia suggestive of hpv. I am confused because the HPV test came back negative and now this suggests hpv. Furthermore, she has offered two options. 1.) a wait and see approach and retest in 4 months or 2.) a LEEP under general anesthesia in a hospital. My question is this...Woudn't I be a candidate for cryosurgery. I have several friends with a similar diagnosis who have had it and successfully been treated. I am feeling uneasy with my gynie. I had the biopsy on the 4th of June, she received the results on the 10th, and didn't call me till the 18th!!!! She has been unavailable to my questions. Her office people keep emphasizing that i have "precancerous cells" and need to do something immediately yet my results sat on her desk for 8 days. I feel uneasy with her and am now getting a second opinion. Does anyone have any thoughts??
This is a difficult clinical scenario as you've stated because your test came back negative for HPV. The thing is, there is a small false negative rate with the HPV test, and that might have happened to you. The fact remains, they are telling you that you have changes to your cervix consistent with dysplasia (i.e. precancerous changes), and to be honest, as confusing as it is, the two approaches they have provided you are the way to go. Waiting six months will be good in that, your pap and biopsy may go back totally to normal (sometimes the biopsies can be ambigous to the pathologist, and in reality, they were benign to begin with..this has nothing to do with incompetence on the part of the pathologist, but the nature of the biopsy that was taken). I think the issue here is that your gynie didn't make you feel comfortable in the first place, and you don't trust her.

LEEP and cryosurgery essentially do the same thing, and in fact, where I come from, we don't even do cryosurgery--we either do LEEPs or cone biopsies.

In any case, waiting will make the diagnosis more clear because it will give a sense of which way the changes in your cervix are going; however, it's obvious that you will be pretty nervous for those next 4-6 months. Either way, you're not going to have raging cancer in your cervix or anything, so it's your choice.

They told you they are giving you general anaesthesia to do the LEEP? That's strange, because they're normally done under local anaesthesia with a hypnotic agent (i.e. midazolam) to relax you (just like they do for therapeutic abortions).

I hope that helps..if it doesn't, please don't hesitate to ask more specific questions.

 
Old 07-01-2004, 10:41 AM   #3
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Re: Dysplasia WITHOUT hpv

Thank you so much for your reply. As you know, this is a scary time. I'm just trying to make the most informed decision I can. That in itself has been difficult because my Doctor hasn't answered my many questions. I've really been left to get my info off the internet and from other people who have gone through this.

I have a couple more questions. My Doctor seems to make a big deal of the mild/moderate ranking. She said since the /moderate was attached to the diagnosis we have to treat this as severe which seems a bit extreme to me. While I definitely want to treat this if I have to, I just don't want to rush into surgery if it really isn't necessary. I am nervous about the LEEP. I don't want to be put under if I don't have to. I have several friends who have been successfully treated with the cryo and have said how simple it was. I know its effective rate is about 5% lower than the LEEP, but I feel that this is still in the mild stage and could poosibly go away by itself. As far as the negative HPV. I too think it could be a false negative and wonder why she just wouldn't re-do the HPV again. Again, since it is showing mild/moderate I think that could be a viable option since she has offered a wait and see approach. This to me , along with the cryo would be the middle of the treatments she has offered. Whatever the HPV results, at least I would know to treat this more aggressively if I'm in the high risk, or less aggressively if I'm in the low-risk or if I don't have it at all. I just know no matter what, I need a physician that takes the time to answer my questions, return my calls. I sometimes think this is old hat for her and forgets that to a person that hasn't experienced this it is really frightening. Thank you again for your thoughts and shared it experiences.

 
Old 07-01-2004, 10:40 PM   #4
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Re: Dysplasia WITHOUT hpv

Quote:
Originally Posted by Verucah
I have a couple more questions. My Doctor seems to make a big deal of the mild/moderate ranking. She said since the /moderate was attached to the diagnosis we have to treat this as severe which seems a bit extreme to me.
Well, the one thing about the diagnosis is this difficult situation that can often arise with the analysis of the pap smear slides...that is, what appears on the slide mostly looks low grade, but they can't rule out a high grade lesion. Usually, one CAN rule out a high grade lesion, but in your case (well, at least from what I'm suspecting) there is a certain degree of atypia in a few cells which doesn't allow the pathologist to rule out a high grade lesion with confidence.
Quote:
While I definitely want to treat this if I have to, I just don't want to rush into surgery if it really isn't necessary. I am nervous about the LEEP. I don't want to be put under if I don't have to.
Yeah, you have to find out about that, because all the LEEPs we do here are under local anaesthesia like I said--they shouldn't have to put you under (if that's what you're afraid of).
Quote:
I have several friends who have been successfully treated with the cryo and have said how simple it was. I know its effective rate is about 5% lower than the LEEP, but I feel that this is still in the mild stage and could poosibly go away by itself.
True, it definitely can go away...but once again, I'm going to make the point that it seems like you're making the LEEP out to be bigger than it is. If anything, it's more precise than the cryosurgery, and all the women are awake during the procedure, the only discomfort is the freezing (which you'll have with the cryo as well) and there is no general anaesthetic in sight! The LEEP is VERY simple...just as simple as the cryosurgery.
Quote:
As far as the negative HPV. I too think it could be a false negative and wonder why she just wouldn't re-do the HPV again.
Well, two reasons...it costs money, but the big reason is because it wouldn't change your management. You have evidence of dysplasia, and it really doesn't matter if a test shows you're HPV negative or not....see what I mean?
Quote:
I just know no matter what, I need a physician that takes the time to answer my questions, return my calls. I sometimes think this is old hat for her and forgets that to a person that hasn't experienced this it is really frightening. Thank you again for your thoughts and shared it experiences.
I TOTALLY agree with you...to be a good physician, you must listen to your patients!! I hope everything turns out well...please keep up updated!

 
Old 07-02-2004, 08:23 AM   #5
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Re: Dysplasia WITHOUT hpv

What scares me about the LEEP is the shot they give you that make your heart race. I am a very nervous person to begin with and that terrifies me. I can take the pain, but that makes me nervous.

I know the cryo isn't as accurate, but it just seems simpler, and less scarier. I just thought to try this first and if it didn't work to go to the LEEP. That seemed like a more progressive approach.

I have 3 more questions:

1.) Is it possoble that the colposcopy/biopsy is also a curative measure? I read some place where after that the patient improved?

2.) When is the best time for the surgery? My doctor was going to have me do it 2 days before my cycle. I was uncomfortable with that because I wouldn't be able to tell if I was bleeding from the surgery or my cycle.

3.) While I know the HPV isn't as significant once the dysplasia is found, what do you think in terms of the high risk - low risk? Do you agree that would help determine how aggressively this is treated?

Finally...should I wait to have the pap repeated in 3 months? ( Which would be about Aug. 5) Or should I push for a retest of the pap and HPV now?

I know lots of questions but remeber my doctor never called me back!!!!

Thank you...

 
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