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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

In case anyone is lurking or interested, here is the information my gyn-onco gave me today. I hope it also helps others.

I have seen 2 other doctors about my HRHPV + CIN1 from my October 2007 pap. The first (regular ob-gyn) said repeat pap in 6 months, the second ob-gyn said biopsy in 2 weeks. This guy was more conservative (perhaps because, being a gyn-onco, he has firsthand experience of what [I]can[/I] go wrong) and colpo'd me right away, taking 2 biopsies of a single "q-tip-sized" lesion at 1 o'clock. I asked him to remove all of it with biopsy but that didn't happen.

First, how big are most dysplasia lesions? And, are most lesions circles with clear borders, or are they "spread out?" It seems for most women they are "spots" or circles, but on the leep pamphlet he gave me, it's a "pool" of dysplasia all around the T-zone.

I still do not understand if he is right about there only being 1 lesion of small or medium size, why he could not do a more "invasive" biopsy and snip out all the bad cells he could see? (Particularly since today's biopsy was not painful.) Does anyone know?

I am confused as to what actually happened, because the colpo/biopsy was no more uncomfortable than a routine pap. For me, the biopsy pinches are less uncomfortable than the swabbing. He also swabbed the ECC, even though he didn't think there was ECC involvement. He said he only saw one lesion, and he thinks it is mild or no more than moderate (but I have to wait 1 week for the definitive path report) so if he is right, then I guess the pap I got in October was a pretty good swab. However, the solution that makes the lesions turn white was only on for a split-second before he biopsied, so can I trust that it highlighted all bad areas? And I have very minimal bleeding from the colpo, but I am discharging some weird brown ground coffee? (sorry, TMI)

He quotes a 20% error rate for Paps; some women who have dysplasia on paps have negative colpos, and vice versa. He then said if dysplasia is definitely present, then HPV is absolutely the cause of it, 100% of the time. He was [I]adamant [/I]about this. (Please note, this probably doesn't apply to ASCUS results as well, only true dysplasias.) I have read of women whose dysplasia occurred before they screened positive for HPV (they eventually seroconverted to positive), so I guess he is correct?

I asked on this board about regression and clearance rates for hrHPV past the 1 year mark, since I could not find any good studies that address this. He said that, clinically-speaking, the chances of natural regression or clearance past 1 year are drastically reduced, and that most regression or clearance happens within 6 months (this is again supported by the (rather scant) literature I've been able to find, I guess this is why they do not follow past 1 year). Again this is my worry because I know exactly how long I've had this (12 months this December) and still it's here.

Unfortunately, he didn't seem to have much faith in surgical procedures, and kept dwelling on the fact there is a recurrence rate for all of them. His attitude towards leep, etc. seemed to imply this happened more often than not (???). I couldn't get much out of him. He also brought up the possibility of difficulty getting pregnant after leep, because it can remove mucus glands making you potentially less fertile. He brought that up without my asking, and seemed to think that was more risky in terms of pregnancy than a preterm labor.

He said if I were his daughter or sister, he'd advise against a procedure right now (whether leep, cryo, cone, or laser) and give it 3-6 months, although if I really want it leeped out right away he will follow my wishes. If, in 6 more months, it is still present, he will definitely treat it, (perhaps because I am pretty sure about my timeline of infection). Even assuming my infection was likely from December, he is still running the clock from my bad pap in October because we don't know how long the actual dysplasia has been present. So, Timber, and anyone else interested, the clock runs from the first bad pap you have, instead of when you think you were infected.

He also believes in the dormancy theory and says that dysplasia does not always arise suddenly after exposure. Part of why this is all so hard to sort out. :( Basically, having HPV is a marker of sexual activity, and nothing else. (well, bad luck too, but that goes without saying no?)

He thinks the vaccine will neither help nor hurt. He regularly talks about the vaccine at conferences.

He did not believe in suppositories and did not offer anything except eat well and de-stress.

So, I am to go back in early March 2008 for a repeat pap & colpo, and hope that the lesion is gone. (At least 3 months, and hopefully closer to 4 must have passed in order for the cervix to heal, otherwise the healing might be misread as bad cells.)

Thanks for reading this, I hope it helps someone, and let me know if you have any questions. Sending you all good thoughts.
Hi girls!

Brie-- I'm so glad that you are researching and reading all that you possibly can on how HPV and dysplasia works. I don't know about you, but I'm NOT a science-inclined person and I"m in grad school for literature, so my brain is not well trained in grasping scientific terminology-- SO it was a challenge for me to be able to understand some of those medical journals that explained the workings of HPV and dysplasia! But keep on reading and researching-- that is the best thing you can do!

Regarding lesion sizes, I really don't know about that. Like Cin said, every woman is different and will have different types of dysplastic lesions. Sometimes they are little lesions on a corner of the cervix, sometimes they are larger ones all over the surface of the cervix, sometimes there is just one spot that needs to be removed. For LEEPs, CIN II is a more shallow LEEP and CIN III is a more aggressive, deeper LEEP. This makes sense as CIN II is only about half to 2/3 of the lining of the cervix and CIN III is from 2/3 to all the lining of the cervix.

Since CIN I is only a minimal level of the lining (1/3) this usually regresses on its own. You really must relax and give your body time to fight this off-- of course, you can help your body by being healthy, etc., but remember that stress also wreaks havoc on the body! You may think your doctors are being conservative in their treatment recommendation, but I think they are doing what most doctors do with a patient in your situation. My best friend's mom said that she's seen OVERTREATMENT and that is horrible! She said she had a new patient whose old doctor gave her a LEEP for her CIN I!!

I think you're right about the cyro-- I, too, have heard from various doctors about cryo pusing the t-zone up higher (haha sorry i don't know the scientific terminology) making it harder to detect abnormal cells if they are to pop up in the future. Plus, it has a high recurrence rate so that's bad, too. I would never opt for cryo and would do a LEEP over cryo any day. Plus, cryo is only effective for milder dysplasias so it doesn't make sense to do it for more severe dysplasias.

Having said that, I completely know what you're going through. When I found out about my CIN last May, I buckled under the stress (plus being a full time student and a teaching assistant, etc) and had a whole day of "melt down", hahaha. I went to my parents' home and just did nothing all day and cried. Looking back, I think that mini melt down was good for me, BUT it is not good to wallow in it for TOO long. :) I think as more time passes, you'll handle it better and be able to cope with it fine. It is very very stressful initially but once it settles in you'll be fine. :)

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