Abnormal pap with normal biopsy and LEEP

I had a pap smear in August that showed carcinoma in situ. My dr. had me return for a colposcopy with biopsies and told me that my cervix appeared abnormal during the exam. He suggested I would need a LEEP and we waited for my biopsy results. The biopsy came back normal, just a mild dysplasia. He could not explain the discrepancy and said I needed the LEEP anyway to be safe. I got a second opinion and had the LEEP in late August. The dr. told me he got all of the bad tissue and the margins were clear. When the pathology report came back it showed all normal tissue-none of the abnormalities my dr. said he saw. He has since sent me to a GYN Oncologist who I will see in a couple of weeks. They had my pap reread to ensure it was accurate and the second reading concurred that it was carcinoma in situ. I am completely confused- how can I have a severe lesion that appears only in the pap but not in the biopsies or LEEP? I will have another colposcopy in a couple of weeks. Can anyone help? I don't understand how a pap can be so severely abnormal and my biopsies and surgery yielded only normal tissue.
Thanks.

Report post

15 replies. Join the discussion

hello, yttims. i'm sorry you're going through all this, and it sounds so confusing and frustrating for you! i'll just put out some ideas and thoughts and hopefully they'll be helpful for you (!). first of all, the pap is 'just' a screening. it is not a diagnosis. if a pap comes back with abnormalities, the doctors do a colposcopy and biopsies to see what's what. and.....did they do a repeat pap during the colposcopy? if not, and you're just relying upon that first pap, might there have been a mix up in the lab? i know it's a remote 'out there' idea, but mistakes can be made. i'm also a bit confused.....you said the biopsy during colpo came back normal, but you also said it showed dysplasia? perhaps the level of dysplasia was different under the biopsy than from the pap? that would not be unusual. and, why did the doctor do biopsies if he didn't see any abnormalities under colposcopy? how would he know what to biopsy? usually, biopsies are done from areas that look abnormal to the doctor. and who did the second opinion? was that a gynecological oncologist? if everything was normal, why would they have done a leep, with a second opinion agreeing to the leep? ok, so lots of questions, but sometimes questions can lead one to answers!

Report post

Thanks so much for your response- It has been so frustrating! During the colposcopy I had after the pap, the dr. said he took samples from the areas that looked abnormal. The biopsies showed nothing more than a mild dysplasia. However, he said I still needed the LEEP because he believed a had a sever lesion that he may have missed during the colpo/biopsy. The second opinion was just a consultation with another gyn who said, without examining me physically, he would go ahead with the LEEP. So I did the LEEP. The tissue taken from the surgery showed some mild dysplasia but was mostly normal. No lesion. Thus the Gyn/Oncologist. I saw him for a consult after the LEEP but he couldn't do an exam as the surgery was just the week prior. He said he'd reread the pap and see me in a month for an exam and see how my crevix looked. I made an appt for 10/10. His nurse phoned yesterday to tell me I was to schedule another LEEP because they confirmed the pap test showed carcinoma in situ. I was very angry- she hadn't read my records and I informed her that the oncologist hadn't even examined me yet.! She apologized and said I needed to come in for an exam. I informed her I already had an appt that I scheduled while I was with her during my consult. I am baffled at this entire process and would like to know if I have a lesion or not. I guess I have to wait to see the oncologist on the 10th but my confidence is waning from the call from his nurse. Argh!

Report post

Hello, again! You seem to be making a distinction between a lesion and dysplasia, but bottomline, it sounds like you have been diagnosed with dysplasia, which means abnormal cells, sometimes called pre-cancer, and from the info you've provided, the pap showed a higher degree of the dysplasia than the biopsy showed. As I mentioned previously, the pap is simply a screening test and not the diagnosis. So, it's good news that your dysplasia seems to be at a lower level than was originally thought from the pap. You may want to get specifics from the doctor, to understand better your medical health; the biopsy should indicate CIN and then a number indicating its level. On the NCCC website, under patient info, there's all sorts of details on understanding pap test results and biopsy test results; the website is nccc-online.org

And, I'm sorry that the gyn/oncologist's nurse had misunderstood your currrent situation. Yes, it's very frustrating when they don't read the info carefully before they talk with you so that they can treat you as an individual! I hope your experience with the doctor goes better than your first impression with the nurse. The doctor may not be able to 'do' much at this point as your cervix is still healing from the LEEP. One usually needs to wait a few months before they can do an accurate pap, and he/she may only be able to tell you if things are healing well at this point.

Best wishes to you, and let us know how you're doing!

Report post

Thanks again for your responses. I went to the oncologist today and he could see nothing with the colposcopy. So there is either a false positive on the PAP or the problem is very high up in the cervix. He wants to do another LEEP because the original pap was confirmed as CIN III. He said that another LEEP was the only way to truly determine if there is a problem due to the discrepancy between the PAP and the biopsies. I don't understand why we wouldn't wait, have another PAP, then do another LEEP but I also don't want to be foolish with my health. I'm going to discuss this with my husband tonight and make a decision. I'm very frustrated and realize my situation is the one out of ten where the LEEP does not correlate with the PAP or biopsies/colpo. Any thoughts are most appreciated. I did like the doctor and he took the time to explain that this is the safest route.

Thanks again...

Report post

yttims, sometimes a doctor will do an ecc (endocervical curettage) to get a tissue sampling/biopsy from the inner part of the cervix. There are women who have cervical cancer (or cervical dysplasia) yet have normal paps because the pap sampling does not reach the tissue that is abnormal. Did the doctor discuss doing this sort of biopsy?

From what I've recently learned, particularly hearing other women's experiences at the NCCC conference, cervical adenocarcinoma is more difficult to detect than squamous cell cervical cancer. According to the American Cancer Society, at their site, www.cancer.org, adenocarcinomas are 10 to 20% of cervical cancers, and "Adenocarcinomas are becoming more common in women born in the last 20 to 30 years. Cervical adenocarcinoma develops from the mucus-producing gland cells of the endocervix. "

That said, i think it's really important to trust your doctor. i'm sorry you're going through such a frustrating situation, and wish you well....I hope you're soon able to get your health back on an easier course.

Report post

Hello Flowershoplady and again, thanks for your reply.

I went to the GYN/Oncologist last week and he does want to do another LEEP. He says this is a strange case because the pap shows a severe lesion and all of the other tests show basically nothing. It is scheduled for next Tuesday and one moment I'm fine, the next I'm a basket case. I asked if it is safe to do this just 6 weeks after the first one and he said yes. I'm not sure why we trust the pap more than the biopsies and LEEP but will go with it to be safe.

I don't know if they can do the ecc during the procedure but I will ask. He feels there may be something higher up in my cervix because the pap test was reread and confirmed as epithelial cell abnormality: high grade sqaumous intraepithelial lesion (HGSIL), sqaumous cell carcinoma in situ. If he goes in and finds it, he will treat it. If he finds nothing, he will be more comfortable saying my pap was a false positive. This is so counterintuitive because all the biopsies are showing nothing.

He was reassuring in that I do not have cancer but precancer, per the pap. I'm 41 and not too concerned about child bearing but am not thrilled to be going through this again. It's traumatic. If it means I'm safe then I'm grateful. I had no problems recovering from the first LEEP (aside from not liking the anesthesia) but am worried I'll have a more difficult time if they take more tissue out from higher up.

Part of me feels like I'm okay and nothing is wrong. The other half is completely panicked. A bit distracting from day to day life but it could be worse! If anyone has had a similar experience, please chime in.

Thanks.

Report post

Hi there! I have been following your story with interest as I have a similar story. I had an abnormal pap that showed HSIL and then the colposcopy was negative despite the gyne saying he could see three areas of abnormality and increased vascularity. He is recommending the LEEP procedure to try to determine why there was such a discrepancy between the pap and colposcopy. I think you are having your LEEP today. I hope it went well and I look forward to hearing how things proceed from here for you.
Sincerely,
missdysplasia

Report post

Hello! It sounds like we have a similar issue. I did have the second LEEP today and it was really not too bad. I don't like anesthesia but was up on my feet a few hours after the surgery. This time it was the GYN Oncologist who performed it. Is your regular gyn going to perform yours? I went and got a second opinion from another gyn prior to my first LEEP and it seems that this is the only way to really determine if there is a problem so I do not regret my first procedure.

The only thing I would have changed is that I would not have had my regular gyn do the surgery.
I'm sure that most are capable but mine made a host of communication errors (ie telling me I had cancer when the pap clear showed precancer) and administrative errors (ie his office faxed me the records of another patient with the same name as mine- a HIPPA violation and unsettling to boot).

I completely trust the GYN Oncologist. He was clear that we needed to do the repeat surgery to ensure there was nothing higher up in the cervix or uterus. So, in your shoes, I would have the procedure. Of course, if child bearing is an issue, you should discuss that with your doctor as I am told the procedures may inhibit my ability to carry a child to term. I'm 41 and have 2 kids so that was not a huge concern for me.

Please keep me posted- you will be fine! I've read lots, too much, about LEEPS and my experience has not been painful or unduly stressful. I think the uncertainty and fear were the biggest challenge for me.

Best of luck- I look forward to hearing good news from you!
yttims

Report post

so good to hear that your leep procedure went smoothly, yttims! i hope you continue to feel ok - be sure to get some rest as your body (and mind!) have been stressed, and need to recover.

it's so great that you've got a doctor you trust. that's so important!

i hope the pathology results bring nothing unexpected.

take care.

Report post

Thanks for your kind words! This board has been so helpful through this whole process. I hope you are doing well, too!

Report post

Hi All

I am experiecing the exact same thing.

Approx nov/06, i had abnormal pap. I then went to the specialist for the colposcopy, a new pap test and a biopsy. The specialists said the PAP test again showed mild abnormal cells, during the colposcopy he said he could see the abnormal cells, so he cut them(biopsy) them off. The results of the biopsy was ok. The doctor said that i was ok for now and to come back in 6 months.

so i went back just this Sept 26/07. I had a pap and a colposcopy. during the colposcopy, the doctor said everything looked fine and the he coudnt see anything wrong, but at that same time, the pap was again showing mild abnormalities. the doctor then said he wanted to schedule me for a leep. i am initially refusing this leep for another 4 months. because of all the discrepencies, i am unsure what to do. the doctor said he can't explain the differences in the test, but to be safe i should do a leep. I said i dont want to. i don't want to mess up something else by trying to fix another. I asked if it would be ok to try more tests again in 4 months and he siad OK>

so, i am going back in january /08 to try all the tests again. if all is wrong again, i guess i will be going for a leep.

I find it very hard to trust doctors now. they are so different amounst themselves AND MY DOCTOR OR THE SPECIALIST NEVER ONCE MENTION HPV. does this mean i don't have it or does this mean they are not education about it?? i don't trust anyone at this point.

i get the feelings one minute i am ok and don't even think about it, then the next minute, i picture myself dying.

i am just confused i guess. i also, i guess i should prepare myself for more that one leep as that seems to be the trend.

Thanks all for listening or reading ;-)

Report post

hello, again. i hadn't read this posting of yours. so, you've got abnormal paps but normal biopsies? and the doctor hasn't mentioned nor tested for hpv? i can understand your confusion and sense of distrust.

first of all, you may wish to consult with a gynecological oncologist as they're the experts with cervical cancer and dysplasia. and you definitely want to be seeing a doctor whom you trust. and, i would encourage you to tell your doctor you want to be fully informed and educated about your health. he should be telling you about hpv as it's the cause for cervical cancer and dysplasia.

and, have you had an ecc in addition to the cervical biopsies?

as for having more than one leep, i think you'll read about some of us who have had more than one, but that's certainly not typical. for most women, a leep or cone biopsy will eliminate her cervical dysplasia. i think that when one is reading message boards, you have to take into consideration that it's often those with issues and problems that are posting. the individuals who are 'ok' often move on to other things and may no longer post about a successful leep that they had with no reoccurence of dysplasia or cancer.

i encourage you to get as much information about your own health as possible, while also learning more about hpv and cervical dysplasia in general. i would also remind you that cervical dysplasia is very treatable. and cervical cancer, especially in its early stages, is also treatable.

i know that this can all be very scary, but you will get through this!

Report post

Hi all,

I'm in a similar predicament. I had an abnormal pap back in May 2007 (one of many, but not lately), so I had a colposcopy and two biopsies done in July. Those came back low grade throughout, they couldn't rule out high grade. I had a LEEP done (with local anesthesia) in August and that came back metaplasia and dysplasia but with clean margins. I had my repap done two weeks ago and that came back HSIL. My gyn is very concerned that it is progressing rapidly and wants to do a hysterectomy. I'm 37 with no kids, but the thought of never having kids is a bit hard to swallow. Also, I'm having a hard time getting my head around the thought of having a hysterectomy for a spot of bad cells. It isn't unheard of, but unusual. I've got a colpo scheduled for December 4th to hopefully see what all is going on there.

Erin

Report post

hello, wyoerin. i'm sorry you're going through all of this! it's frustrating, isn't it?!?! i'm a bit surprised that you've had a pap only 3 months after the leep. it's my understanding that the cervix often can take 6 months to heal after a leep. it's good to hear that you've got a colposcopy scheduled to determine what's what. i hope that you're seeing a gynecological oncologist as they're the experts with cervical dysplasia/cancer. and, an option for women who want to maintain their fertility is to have a trachelectomy where only the cervix is removed. has the doctor discussed this with you? there are lots of women here to support you! best wishes.

Report post

Thanks, flowershoplady! It is frustrating. What I didn't tell in my previous post is that I had laser surgery back in 2001 for VIN I, and that has stayed away, but I still get regular checkups and punch biopsies (*ouch*). My gyn has me on Aldara for that now, which isn't pleasant, but better than vulvar cancer. I've been fighting HPV viruses for over eight years now.

No, I haven't seen a gyn/onc yet. The closest one is an hour away. After I get the results from the colpo, I'll probably consult one.

My gyn kept telling me that this first pap after the LEEP would be abnormal, so when he called to tell me I had a "high grade lesion" I blew him off at first. It didn't really sink in what he was telling me until he said the phrase "carcinoma in situ."

I've read about the trachelectomy, and I would seriously consider that if I was 10 years younger. I will certainly discuss all of my options before we decide a course of action.

Erin

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support NCCC

Help the National Cervical Cancer Coalition reach its goals and support people like yourself by making a donation today.

Donate to the National Cervical Cancer Coalition

Discussion topics

Community leaders