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View Full Version : A year and a half from my LEEP and still normal!


Timber
11-16-2007, 09:31 AM
Hi guys! I used to haunt this board frequently during my abnormal Pap days. I had a LEEP a year and a half ago for CIS and just had my 3rd normal Pap.

I just like to come back and report my good results since I know that often people who get healthy stop coming to the board and it leaves the impression that nobody is ever cured. Not so!

Best wishes to everyone!

brieaukirsch
11-16-2007, 09:55 AM
Great news Timber! Thanks for updating. Are you also getting tested for HPV in your paps so you know whether that is "gone" (undetectable or really gone)?

I've read a lot of your posts, and hope you can answer some questions. I know people stress CIN1 can and usually does resolve within 1 year, but if it doesn't, what are the chances it will regress in year 2? Much lower?

Does the CIN1 regression "rule" apply even when it is a hrHPV strain? That confuses me so much--usually only the hr strains cause cervical changes, the low risk ones tend not to, or if they do they cause very mild ones like ASCUS. So if you have cervical changes of CIN1 or greater wouldn't you, 9.9 times out of 10, also have hrHPV? The 1-year clearance rate for the most common hrHPV(16) is 50%, a bit dismal; do you know 2-year clearance rate?

Reason I ask is because I know exactly who I got this from and when, and I've had it 12 months (my last pap in September 2006 was normal, like all my other paps, no HPV or maybe they didn't test for it?). It definitely has not cleared and until I get a colpo, I don't know if it's really "just" CIN1 or worse. I didn't know about it until 2 weeks ago, since my pap wasn't due until then, which I could totally kick myself for since something's been up for the better part of the year. I simply did not KNOW about HPV. I thought it only caused warts, if I'd known it could cause cervical cancer, you bet I'd've been abstinent. I immediately started on a battery of vitamins, etc. but my lifestyle is soooo healthy already (e.g. there's nothing to quit, like smoking, or to start, like exercising, and my diet is super), I wonder if I shouldn't just LEEP it out because my immune system is not doing its job.

I wonder when they start calculating the 1-year regression or clearance rate? If most ppl don't know who they got it from, do they "start the clock" at the time of diagnosis? Or do they include the patient's estimate of when she got the hrHPV?

As far as I understand, the LEEP's purpose is twofold: first, mostly to rid the cervix of bad cells, and second to trigger the immune response to rid the body of the virus or suppress it (whichever theory you believe)? Could a colposcopy do the same, if the changes were ASCUS or CIN1 and the lesions had clearly defined borders? Have you heard of this happening before?

Finally, is LEEP not an option if you have CIN in the ECC as well as the T-zone? Is it only a cone biopsy (CKC?) at that point? How often is the ECC involved?

Thanks much, and sorry for all these questions. I know you prefer to err on the side of caution as I do. I admit to wanting to surgically excise all remnants of this person from my being.

I'm so glad there are informed women who come back to tell the good healthy news.

Timber
11-16-2007, 12:11 PM
Hi!

I have not gotten tested for HPV recently. I actually have no idea what strains I had/have. However, since I progressed from CIN1 to CIS in less than a year, I suspect it was an aggressive strain.

I believe there have been studies of 2 year regression rates of CIN I. However, I'll have to hunt around later this evening for the studies. If I recall, regression rates drop after the first year, but it's not like you have a 90% chance of progression or anything. I think the chance is still rather low. I'll look for you.

It would also be possible to determine rates of HPV clearance by year if a group of women were given regular HPV tests. That way, near date of infection (rather than just date of diagnosis, as you said) could be determined and clearance rates could be studied. I don't know what year-by-year rates of HPV clearance are. I'm not sure if such a study has been done, but again, I'll see if I can find one and will let you know.

Your Pap in September 2006 probably didn't test for HPV. Some doctors may test routinely, but I don't think it's typical. You could ask.

A colposcopy will not have the same effects as a LEEP, even with clearly defined margins, because a colposcopy removes just a tiny, shallow portion of tissue. Not only is most of the affected tissue left behind, but no major healing response is needed. Your body would scarcely notice such a small wound. LEEP removes a much larger, deeper sample and allows the doctor to investigate how extensive the damage is.

LEEP is an option if you have disease in the ECC if it's not too deep or extensive. I had ECC involvement and my doctor has told me to consider myself cured now. Of course, the possibility of ECC involvement is another reason colposcopy isn't curative since colpo doesn't test tissue deep in the canal.

I err on the side of caution within reason. Since CIN can turn to actual, invasive cancer, I feel that LEEP is a reasonable treatment to pursue in cases of persistant CIN. LEEP is so simple and minor that the payoff (avoidance of something life threatening!) seems worth it to me. However I, of course, wouldn't say that everyone with an abnormal Pap should jump at the chance to have one. CIN 1 is likely to regress so I would never advocate being overly aggressive. I just think LEEP a really fortunate option for anyone with persistant disease. If only all cancers could be prevented so easily, you know?

Has your doctor recommended a LEEP yet? If not, I wouldn't worry too much. You may regress or you may not, and if you don't - have the LEEP. It's really very simple and it's nice to be through with all of the worrying, follow-ups, and procedures, too. Good luck.

CynwithCIN
11-16-2007, 12:41 PM
Great news Timber! : ) My best wishes to you on successful paps in the future!

If your HPV infection persists as active, it is very likely your CIN will continue to progress as well. If your immune system were to successfully suppress the virus, there is a chance your body may be able to repair the damaged caused. As CIN progresses to CIN II, it is less likely to regress, and they usually recommend treatment at this stage. Also, just a F.Y.I., there can be discrepencies. The only way to confirm exactly what is going on is by having the tissue removed & sent to pathology. They told me my first abnormal pap was LGSIL (low grade squamous lesions) and that I would need a colposcopy & biopsy done immediately. She said I would likely need cryrotherapy to treat it. When the biopsy results came back I was told it was actually HGSIL (high grade) CIN II-III & that I would need LEEP not cryo. After my LEEP pathology report came in it was confirmed as being CIN III not involving inked margins, and CIN I involving inked margins. I have also heard of it going the other way, as in the pap will say it is worse than it actually turns out to be.

Anyways, I just wanted to throw my two cents in on the whole CIN I & cryo issue. If in the future (knock on wood) my dysplasia were to pop back up & it were classified as CIN I, I personally would not do cryo. I would (can't believe I am saying this) but actually opt for the watch & wait approach in this case. I am glad I had LEEP performed, at least I feel slightly more confident that my chances of reoccurance have been lowered. I would be much more confident had all my margins been clear. With cryro it just hits the surface cells, so if abnormal changes have occured deeper into the tissue, this treatment runs the risk of those cells slipping through the cracks.

LAgirl81
11-17-2007, 04:08 AM
Timber that is great news for your post-LEEP checkups. I agree with you and think it is REALLY important to come back here and post success stories for other women going through the mental stress of all this HPV/dysplasia crap. Hopefully you'll keep on getting normal paps! :)

Brie, I think you really needn't worry too much about CIN I. I'm sure you've done you're reading up and know that most women with CIN I clear up from 1-2 years, sometimes even less time than that. HPV infections and dysplasia are SO common and the regression rate for CIN I is very high (I forget the rate-- 75% I think?). The only thing you can do now is wait and watch-- I don't think any doctor will or SHOULD recommend a LEEP for someone with CIN I as that is much too aggressive. Remember that a LEEP is not a cure-all and is not a guarantee that your dysplasia won't come back, so "leeping it out" will not cure you-- it DOES have a high success rate, but it is usually only performe don CIN II and CIN III.

It sounds to me like you're much too anxious and high-strung over this. I know it IS very stressful, but having been where you are 6 months ago, I know that stressing myself over this is pointless. Easier said than done, I know, but you must keep your mind off of it and keep up your healthy lifestyle, as you say you're doing. You read my other post about my naturopathic success in treating my CIN I/CIN II and my dysplasia regressed from that to NORMAL in 5 months time! I was a bit skeptical of the treatment and thought it may not work, but it did and I was so happy I went that route instead of jumping into getting a LEEP as my doctor first suggested. I'm only telling you this because there is a GOOD chance your body will rid itself of the dysplasia and you must give your body time to fight those abnormal cells. Stress can only cause your body harm and exacerbate the situation! I don't mean to sound preachy, but I just want to give you some hope and words of encouragement as I know exactly how stressful and awful it can be at times (mentally speaking, of course). And don't beat yourself up over the sex thing-- honestly, HPV is virtually impossible to avoid unless you planned on remaining celibate for life. It is the common cold of STDs and almost all sexually active people will get HPV in their lifetimes-- it's just us lucky few who exhibit any symptoms at all.

So please don't stress and I hope these success stories of treating dysplasia with either naturopathy or LEEPs/cyros give you some hope. You have options and you are ultimately in control of your body-- just give your body some time to do its job and keep being vigilant about your paps. You WILL be fine so long as you keep getting your check-ups! Take care and let me know if you have other questions :)

casey7
11-17-2007, 06:03 AM
hello Timber,
was happy for your good news that your health is fine yes it is nice when people take the time to just let everyone know there doing good i felt joy when i read it expecially after reading previous one congratulations to you may your christmas be filled with good health-love and most lf all happiness with your loved ones bless you cheers casey7.

brieaukirsch
11-17-2007, 04:34 PM
Hi gals, thank you so much for your replies.

I know I seem over-anxious but I am just so upset with myself and not able to come to terms with this. I know cervical cancer generally takes years to develop, but cancer from the most common high risk strain (16) can happen in a year or two. I've read it on this and other boards. I think at a minimum my gyn should have colpo'd me (but he didn't even inform me of the HPV, he just sent a card telling me to come back for a repap in 6 months), so I'm seeing a gyn-onco on Monday for a second opinion.

Lagirl, I appreciate the conservative management approach, and I am with you on holistic--I've had two major, and completely unnecessary (useless) surgeries, so I am not crazy about going under the knife again. I am a single woman who wants kids with no prospects on the horizon, and just as my life was getting in order, this happens. I feel so awful, used, dirty, about having this STD. My faith in the medical establishment is faltering and I feel like I cannot even depend on myself to make sound judgments.

Are you ladies sure that MOST women with HPV, even hrHPV, won't show abnormal paps? I think I read a figure of 80-90% won't, but have it anyway, but I'm skeptical because it seems this happens to A LOT of women! (look here on this board!)

What worries me the most is I don't know how many hr strains I have, but I do know I've had it/them a full year (at least). So, the studies citing regression is more likely than not in the first year, as of this month no longer apply to me. True, I did not start all the vitamins/supplements until 2 weeks ago, but my lifestyle w/o the vitamins was already so optimal, is it reasonable to expect regression or clearance with just added vitamins boost?

Lagirl, I just looked at your naturopathic post, and a search reveals no NDs within a 150-mile radius...:( (I live in a smaller town.) Well, I'll hold off on the suppositories for now, but in addition to a great diet, I'm on the following daily regimen (no doctor prescribed it, but I've researched this carefully):

I3C 200mg
folic acid 5mg (is this too much?)
multi
selenium 200mcg
b-complex
(to be honest I think I'm urinating it all out, because since I started this regimen my pee is bright yellow/orange!)

I'm upset my gyn did not even mention the possible link between folic acid and CIN.

Additionally I am completely abstinent. Not too hard--my drive is all gone.

I already eat so well, never smoked, don't drink, exercise well, etc. that I fear this is the best my immune system can offer me and I will have to get a leep and cross my fingers. If leep was a cure, I'd've have gone ahead already. I know it's not curative but can help the body clear it.

Again, thanks all for your comments and continued good luck to all.

P.S. Timber, I apologize for "hijacking" your thread...and thanks again for your quick reply.

 
 
 




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