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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 Lagirl, thanks for your messages. I have read many of yours and others' posts and they are so helpful. This has not been the best news but I am learning all I can.

I seem to have run into the opposite type of doctors as you so far, mine have been too conservative in management, I think.

Do you know how large and what shape lesions typically are? I think mine is 6-7mm, (I measured the diameter of a q-tip head, I really hope he means the small q-tips people stick in their ears, and not the HUGE q-tip pap swabs in the gyn's office). This assuming he saw all the bad stuff because again, the entire process only took a few seconds (???). Indeed, according to his description, I'm surprised the pap picked it up at all.

Is it possible, during colpo/biopsy, to "contaminate" other areas previously unaffected by the HPV? Say inadvertent transfer of bad cells from affected area(s) of the TZ to the previously-unaffected ECC, during the ECC curettage?

Have any doctors mentioned what happens to the TZ after cryo? I've read on the obgyn forum that it tends to "disappear way up the ECC," which I am having trouble picturing. So after cryo, you could end up with an inverted cervix? (a mushroom with the canal on bottom and TZ on top, instead of the normal inverted mushroom with the canal on top of the TZ) making it very difficult for the TZ to be visualized if it persists later?

I cannot believe I know so much about something I never thought I'd need to know anything about...:(

Thanks again ladies.
[QUOTE=brieaukirsch;3314986]Do you know how large and what shape lesions typically are? I think mine is 6-7mm, (I measured the diameter of a q-tip head, I really hope he means the small q-tips people stick in their ears, and not the HUGE q-tip pap swabs in the gyn's office). This assuming he saw all the bad stuff because again, the entire process only took a few seconds (???). Indeed, according to his description, I'm surprised the pap picked it up at all.

Is it possible, during colpo/biopsy, to "contaminate" other areas previously unaffected by the HPV? Say inadvertent transfer of bad cells from affected area(s) of the TZ to the previously-unaffected ECC, during the ECC curettage?

Have any doctors mentioned what happens to the TZ after cryo? I've read on the obgyn forum that it tends to "disappear way up the ECC," which I am having trouble picturing. So after cryo, you could end up with an inverted cervix? (a mushroom with the canal on bottom and TZ on top, instead of the normal inverted mushroom with the canal on top of the TZ) making it very difficult for the TZ to be visualized if it persists later?

Lesions vary in size with the individual. My first abnormal pap came back (LGSIL) CIN I. They did a biopsy on three spots. First one at 7:00 o'clock measured 0.3 x 0.3 x 0.2cm, second one at 1:00 o'clock measured 0.3 x 0.3 x 0.2cm and the third one ECS 0.6 x 0.6 x 0.1cm. The path report came back chronic cervicitis and squamous metaplasia at 7:00, high grade squamous intraepithelial lesion (CINII-III) at 1:00, and fragments of benign endocervical tissue for the ECS. Then when they did LEEP there were six sections noted on the path, again in various measurements. One area came back as CIN III, three as CIN I, and two as benign. Knowing of the discrepancies I encountered, if faced with the need for treatment in the future I would opt to wait if the biopsy came back as CIN I. (I would not want cryro) and LEEP or cone for any grade higher. I have heard most women give birth successfully after LEEP. Risks are there, but overall I think most women go on without any problems after their first LEEP.

As far as cross contamination, I would like to believe they have a system for sterilizing the tools to avoid all possibilities of this happening.

As for the TZ zone after cryro I have heard the same thing. That is one of the reasons I would not opt for it, another being my past experiences has shown me the importance of having a tissue sample to send to pathology in order to get an accurate diagnosis. I do have scar tissue from my LEEP which had an effect on my transformation zone, however, my doctor was able to dilate my cervix to get around that problem. The good out weighs the bad.

Wishing you good luck on your results, hopefully yours will regress the way LAgirls has!! I am rooting for you guys!
Hi Lagirl, I know, I can't help overthinking this though, since I have so other problems that are "extremely rare and don't happen to women in their 20s with no family history" (still, I'm proof it can) I just think the wort...I guess my caution is coming off as hyperanxiety. Sorry!

That's great news about the watch and wait, and finally regression--so she had CIN1 (not "just" ASCUS) that took 2 years to regress? My gyn-onco didn't specifically say they NEVER regress after year 1, but that's how he came off.

So, I guess large lesions do not mean it is more than CIN1, and small lesions do not mean it is CIN1 or ASCUS, it just depends on the pathology. I will wait for the path report to come back. I hope he is right and it is not more than CIN1 because he will definitely treat right away and I am just not sure about a leep right now.

On the other hand, if I still have CIN1 in March I'll pursue "drastic" measures (some doctors still don't even leep for CIN1). Part of the reason I want to know the shape/size is to track regression or progresion. If it's half the size or less in March (but still there), I just might give it 3 more months.

Is the ECC safe? I know the pap is supposed to take cells from both ecto and endocervix, to check for AGUS. I hope I can be sure that the ECC curettage is definitive.

Is AGUS also an HPV problem, or is it an endometrial problem? I know it is much more serious than ASCUS and colpo'd stat.

I think I will look into traveling a few hours to see an ND after exams, I just have so much going on right now and can't get away. Going to a doctor's appointment is so time-consuming!!

Thanks, and sorry for all these questions, I'm just glad there are woman here to help me with this.

Sorry moderator, I didn't know you couldn't share websites.
Hi again!

I have exams coming up so I'm constantly looking for ways to procrastinate. Also, I think it's so important to come back and help inform other women who've gone through what I have. I agree with you and think that these boards are so important! I think these boards are partly what kept me sane these past 5 months.

Yes, the doctor said the woman had CIN for over 2 years and it didn't get worse, and then it finally regressed. Every woman and body is different, but the healthier you are, the more chances you have of your HPV being suppressed.

You know what would be an interesting question to ask docs? What would happen if you had CIN I for years? I mean, technically CIN I that doesn't progress is not harmful to your health. So what if someone has CIN I for years? What if it doesn't regress? I think a patient in that situation could actually watch and wait for years and years and not have any treatment done, right? Although this would not be ideal, but CIN I that doesn't progress is not dangerous to one's health, I assume?

I have also heard that some women get ASCUS paps regularly without developing any dysplasia. While this may be inconvenient, having ASCUS paps can be some women's form of a "normal" pap, if that makes any sense.

I'm not sure what an AGUS pap result means. An ECC is a good way of finding out if any dysplasia is up in the canal-- if there is, then a cone biopsy is in order (which takes out much more tissue than a LEEP).

Try not to worry until you know definitively what's going on with you. I was really happy with my choice in pursuing an NP's treatment despite several doctors' menacing "your dysplasia will get worse if you wait 5 month" -- which is BULL because most dysplasia takes up to 10 years to develop into invasive cancer, if it even progresses at all. Yes, there are some women that went from CIN to CIS within a year, but that is quite RARE. That is NOT the norm and you must remember that! Even if that were to happen to you, CIS is still easily treated with LEEPs.

You know what may help? Write out a list of your worries and the ways of coping/dealing with the worst-case scenario possibilities. For example, if you write down "severe dysplasia" as a worry, then the coping mechanism would be "LEEP with high success rate." If you write down fertility probs as a worry, then a coping mechanism would be "only 1-2% of women experience problems post-LEEP." I did this and it really did help me in a mental sense. :) Take care and let me know if you have other questions!
[QUOTE=brieaukirsch;3315702]I think this means my lesion was pretty big then, if it was the size of a q-tip head.

I was leaning towards cryo. His demeanor indicated he felt this was a better approach initially, but he made no mention of the TZ disappearing up the ECC.

So Cyn, you actually had more lesions than what the colpo showed? That's my big fear right now, that he wasn't able to visualize everything. And sometimes, lesions can even be benign? Meaning completely unaffected by HPV? What is "ECS?"

If it's still there next time, but "just" one spot (same spot), can I just cryo that one spot or does it invert the ENTIRE cervix? Or, can I have a lopsided shallow leep, targeted just at the 1:00 lesion? I hate the thought of removing perfectly good cervical tissue.

I know you guys think I am ok if it comes back CIN1, but I really do know how long I have had this (12 months) and he says if it's not gone in a year it's probably going to stick around, plus, I can't change my lifestyle too much, I've already done everything right (except have unprotected sex!) so it's not as if I can stop smoking and wait for my lesions to regress from that. :( That is why he is willing to treat in March if it's still there (in fact, he is willing to treat now if I want, but warns me I may be in the same situation 6 months from now, due to recurrence. He kept emphasizing this implying it happens a lot). And there have been way more than enough gals on this board who progressed from nothing to CIS in a year or two for my comfort. Of course, I don't want to have parts of my cervix removed unnecessarily, I do want babies in the near future, as well as all my body parts, but the thought of having this inside me is awful.

I am dying to try the suppositories and can't find an ND within 200 miles of me. :( I want to order Beta-Mannan suppositories (basically: aloe vera and vitamin E), but man does that website ever look sketchy...

Thanks again gals, for your input and support.[/QUOTE]

I see your stradegy as far as comparing lesion size...clever! The transformation zone is a risk with both LEEP & Cryro. I have personal experience with this now after LEEP, my last few paps came back with endocervical transformation component zone not present or scant. First doctor over looked it, my current doctor took action thankfully & dilated. Based on my personal experience, cryro is not something I would ever do. I think its of extreme importance to have a tissue sample to examine in order to be sure of a diagnosis. For CIN I I would take LAgirls natural approach along with close watch. Pray it regressed, and LEEP if it advanced. I would insist the close watch involved colposcopy however, I would not let my fate rest on the pap alone. I would also want HPV testing to see if an active infection is present. High risk typing is all I am concerned about. Narrowing it down to the exact type won't change protocol, so its of no use really other than just to know for ones own records.

My LEEP specimen was dissected into six sections for pathology. A. center B. bottom C. top D. Left edge E. 2nd pass and F. ECS (Endocervical sampling) Path report confirmed A1.CIN III not involving inked histologic margin A2.CIN I involving histologic margin B. CIN I involving histologic margin C. CIN I involving internal (proximal) histologic margin D. CIN I involving histologic margin E.Benign endocervical tissue and cervical stroma negative for intraepithelial lesion and F.Fragments of benign endocervical tissue. (lesions can be benign, often caused by a different strain of HPV for instance 6 & 11 or low risk) I have never heard of partial LEEPS or cryro, not to say its not possible though. I would venture to say its not favorable however. I hear ya on losing perfectly good tissue. Better safe than sorry though right?

I have heard positive things on beta-mennan, lol, does look shady though. Its hard to say what your body will do in the course of six months. You may be lucky as LAgirl has, or it may go on to a more advanced grade. I took vitamins regularly, ate very very healthy, and worked out like mad before my fist abnormal pap. I was still diagnosed with HGSIL despite my efforts poured into my health. You just never know what is going to happen, HPV is unpredictable, so all you can do is be as informed as you possibly can, make decisions accordingly, & be extra diligent about your health & paps. I hope you come to a decision you are comfortable with. Stress is a major factor for all of us. CIN is now a part of your life, its been over two years, and here I am...still with unanswered questions & forced to wait & see. What ever you decide, my best wishes to you for clean paps in the future.

For the inbetween appointments & wait time, we at least have this board to vent on :)
Hope everyone had a nice Thanksgiving!!

Hi Briea, LEEP can cause scar tissue, making it difficult to see the transformation zone. I was informed this happens on occassion, but isn't necessarily the norm. I was told by a member on here I fall into a small group of people this happens to. Medically, it was a very quick & simple procedure to get around it in order to obtain cells for my pap.

For high risk probes done after an abnormal pap, or by request, they are checking for strains, 16,18,33,35,39,45,51,52,56,58,59,& 68. In my records the doctors have noted types 16 & 18 in the past. I was under the false impression they knew I had these types specifically. Turns out this was just a notation because they are so highly linked to cervical cancer. When I found this out I asked if I could be typed specifically. My doctor said yes its possible to do it, they just do not because it would not change the protocol any. Though it would be nice to know, I would much rather them error on the side of caution. I like the fact the protocol is the same straight across the board for high risk HPV. It is possible down the line as more research is performed that other strains of high risk HPV may be linked directly to cervical cancer. I remember around the time I had my LEEP they had not linked HPV to 100% percent of cervical cancers yet. They said it was responisble for some. In a couple short years time, research has made a huge leap. (Pun not intended) Who knows what they will be saying another couple years from now. Even though HPV has been around for quite some time, the knowledge of its significance is still relatively new.

Anytime. It was different grades of lesions within the same tissue sample.

Thanks Briea, when I say its a part of our life now, I mean it in terms of we must be diligent from this point on. My doctor believes once you get HPV, you will have it for life. Kinda like herpes. I believe this too. Which means we must be on top of our annual exams, and follow appointments. Since my margins were not clear, and I have a coexsisting HSV infection, my chances of reoccurance have been increased a bit. My latest pap was performed on the 15th. They obtained cells from the transformation zone/ECC. This is where most cell abnormalities start out, so if this one comes back clear, I will feel much more confident that I have this under control. I had an ASCUS back in Feb of '06, the following in May said epithelial cells with reactive/inflamatory changes. The one in Dec came back normal. The one after that came back endocervical transformation component zone not present or scant. The doctor took no further action. My pap in August came back the same, so they had me go back in to repap & that came back the same as well. This is how my doctor came to the conclusion I have scar tissue & dilated on the 15th. Keeping my hopes up I will be getting back good news next week!!!

I have never used suppositories, but isn't it the material in tampons which links it to TSS?? I do have tons of different kinds of supplements in my cupboard since 2005, and I am hoping Acyclovir may be helping to suppress as well since it is an anti-viral medication.

You ladies are awesome, so glad you are on here!! Have a wonderful Thanksgiving weekend!! Wishing everyone clear paps in the future!

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