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angel4747 04-16-2010 11:05 AM

AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Hello,

Three days ago I found out that my most recent pap result came back with atypical glandular cells (AGUS or AGC). This is my first abnormal pap result (I'm 36), and I'm still in a bit of shock. I definitely wasn't expecting this to happen, but who does?

I've been doing a lot of reading since I got the results, and I realize that the AGUS result needs to be taken seriously and tested thoroughly. I really appreciate the members here who have provided such great information and support to others in the same position. Thank you!

My colposcopy is scheduled for 3 weeks from now (May 6), and I assume I'll need to have an ECC and endometrial biopsy (and HPV test) done at that time. I'm also guessing that if they don't find anything at first, I'll need to continue having these tests done for a while, considering the possibility of glandular involvement. I also plan to request a pelvic ultrasound if things come back normal the first time.

Unfortunately, I've read some of the horror stories here about the ECC and endometrial biopsies, so I'm pretty nervous about the pain involved with these procedures, especially if I have to get them done on a regular basis. I'd like to ask a few questions of those who have had one or both of these procedures done, or of anyone who has knowledge about these procedures.

* What is the most painful part about the procedures -- the actual biopsies, or when the doctor inserts the instruments into the cervix?

* Is there anything I can do to relax my cervical muscles during the procedure, hopefully to make it easier to pass the instruments through the canal?

* How long does the pain last? How would you describe it -- pinching, cramping, stabbing, sharp? On a scale from 1 to 10? Please be honest! I want to know what to expect.

* I've called a couple of OB/GYN offices (one was actually a gyn/onc) and asked if they would use a local anesthetic before these procedures, and neither of them will. Is this common? Why won't they do it? Does the local anesthetic not help?

* Has anyone been prescribed pain killers (stronger than Advil or Tylenol) before these procedures, and did it help relieve the pain?

* Do you think that these procedures are just "uncomfortable" for most women, but that a few women have severe pain? I can't understand why the medical establishment would subject women to such painful procedures if the majority of women have severe pain.

Thanks in advance for sharing your experiences. I really appreciate it!

Angel4747

zoe96 04-16-2010 12:16 PM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Hi Angel --

Welcome, but sorry for the circumstances that bring you here.

Regarding the procedures, I've had a colpo, ECC and endometrial biopsy, and for me, the endo biopsy was the worst, although definitely bearable. I did not have any pain killers for any of these procedures, except a couple of motrin before the endo biopsy (which was performed a few months before the colpo and ECC, which were done at the same time.

My colpo involved a few biopsies, which were for me really just a minor, extremely quick pinch that I wouldn't even say was painful. The colposcope is really just a magnifying instrument so they doc can better see the cells, and see if there's area that he/she feels need to be biopsied, so there is really no pain associated with that as it's just a visual exam. If they take a biopsy, for me that was a quick pinch, and lasted less than a second. They only usually take about a 1mm by 1mm piece of tissue, if that. It's very small.

The ECC takes a small piece of tissue (but larger than the other biposies) from inside the cervical canal. For me, that pinched and was painful (not terribly, but it was noticeable), although by the time I was able to say ow, it was over with. In my case, the ECC sample was 1cm by 1cm by less than 1mm deep.

I had no residual pain from either of those procedures. While the ECC does go into the cervical canal, the doc doesn't really go that far up (usually about 1cm or so). The instrument is very narrow and doesn't go all the way up the canal.

During the endo biopsy, I believe the doc will dilate you if they can't pass the swab through the cervical canal. I didn't have to be dilated. My doc had told me to take 800mg of motrin an hour before I came in for the exam. What bothered me was the swishing around they do with the swab in order to get the sample. THAT sucked, in my opinion. At least the one I had was done with what looked like a fat tipped, long-handled Q-tip. After passing through the cervix (which did not hurt), she kind of swished it around for ten seconds. I was like um, this is not comfortable, and she counted out loud to let me know when it would end. I had some very uncomfortable (not unbearable, but definitely uncomfortable) cramping within about ten minutes, and it lasted probably about an hour or so. By the next day I think I was fine.

Aside from taking the motrin, I don't believe there's anything you can take to make yourself more relaxed, except maybe some Xanax or other anti-anxiety medication, so perhaps you won't tense up in anticipation. Some ladies on here have had horror stories, I agree, but there are also a bunch of us, myself included, that didn't really have a problem with these tests.

With an AGUS pap, you definitely want to make sure that they do an ECC. Assuming this testing finds nothing of concern, they will tell you to come back in six months, maybe three, depending on how cautious your doctor is. Personally, I'd insist on three months, even if I had to pay for the visit myself. Glandular stuff is nothing you want to mess with, and definitely moves faster than the squamous stuff. There are a few of us on this board, myself included, whose cases moved rather quickly. I don't want to scare you with my story, because a large part of what happened to me is because I had a really crappy doc who couldn't do a proper pap, but I went from a clean pap and clean endo biopsy in May, to being diagnosed with invasive adenocarcinoma (glandular) in November. My problem was probably there in May as well and my old doc missed it, but I was diagnosed at 39, and had never had even one bad pap my entire life, and I faithfully went every year. So my point is, keep a close eye on this!!

Unless you have a rather large tumor, a pelvic ultrasound isn't going to show you anything of use regarding your cervical condition.

Good luck with your tests, and keep us posted on how you are doing.

LilyL21 04-16-2010 02:20 PM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
I agree with everything Zoe says. I'll add my answers to your questions for a second opinion but I've never had an endometrial biopsy.

[I]* What is the most painful part about the procedures -- the actual biopsies, or when the doctor inserts the instruments into the cervix?[/I]

The ECC for sure. I didn't find the biopsies painful at all, so of course that is the winner.

[I]* Is there anything I can do to relax my cervical muscles during the procedure, hopefully to make it easier to pass the instruments through the canal?[/I]

Definitely take some pain killers before. I do a whole bunch of Midol before each procedure.

[I]* How long does the pain last? How would you describe it -- pinching, cramping, stabbing, sharp? On a scale from 1 to 10? Please be honest! I want to know what to expect.[/I]

The pain of the ECC last only as long as they are doing it. For my doctor, that's usally around 5 seconds. It is NOT stabbing or sharp pain at all. It's dull but intense. Sort of like bad cramps. I'd put the pain at about a 7, but again, it's only for 5 seconds. I am SURE you can handle it. But some women don't even feel the ECC at all. Maybe you will be one of them!

[I]* I've called a couple of OB/GYN offices (one was actually a gyn/onc) and asked if they would use a local anesthetic before these procedures, and neither of them will. Is this common? Why won't they do it? Does the local anesthetic not help?[/I]

I had a LEEP and I received the local anesthetic for that. They injected it into my cervix using several injections. Getting injections in my cervix hurts me MORE than the ECC, so getting a local anesthetic is really pointless for that. Though it might help with the pain involved with the opening of the cervix for the endo biopsy, I think it might not be that helpful with the swishing stuff Zoe is talking about. After all, they inject your cervix, so most of your uterus will probably not be numb. I'm not sure if there is anything they can do to prevent that short of putting you under or a spinal block.

[I]* Has anyone been prescribed pain killers (stronger than Advil or Tylenol) before these procedures, and did it help relieve the pain?[/I]

No I haven't and I really don't think they are necessary for biopsy and ECC. I can't say about the endometrial biopsy though. Also, I think Zoe's recommendation for Xanax of some anti-anxiety meds would be a good idea.

After my CKC, I awoke from surgery and I was in pain. I told the nurse and she gave me a 5 mg Percocet orally (even though I had an IV). It did NOTHING. I told her I was still in pain and she said, "Unfortunately, we can't make all your pain go away. We just reduce it." That is such crap. They can stop the pain. If I could do anything over again in my treatment, I would yell at that nurse and tell her to get me some real drugs. But I was stilly groggy from the anesthesia and I just didn't say anything.

I think doctors don't like to prescribe pain meds, possibly because of the risk of abuse, but seriously there is no reason for you to be in unnecessary pain. Tell your doctor that you want some pain killers. You don't have to use them if it isn't so bad, but at least you will have them. Not wanting to be in pain doesn't make you a baby, it makes you smart. You shouldn't have to suffer when there is stuff out there that could easily help you.

(That's my pain rant. Every time I think of that nusre I get really ****** off!!!)

[I]* Do you think that these procedures are just "uncomfortable" for most women, but that a few women have severe pain? I can't understand why the medical establishment would subject women to such painful procedures if the majority of women have severe pain. [/I]

I think you're right about it. Most of it is just uncomfortable. And like I said above, the procedures to numb you are way worse than the pain it causes, so they just aren't used.

Pickle Eyes 04-16-2010 06:15 PM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Hi Angel4747, I'm sorry you received this diagnosis, yet I'm glad you are finding some helpful information. Zoe and Lily have given some great information. All three of us have had similar situations, yet there are differences, of course.

I was faithful with my paps from 19 to 44 (actually, still am, and I'll be 47 this year). I always had good paps.

At 44, my doctor did my pap and asked if I wanted the HPV/dna test. I said yes. My pap came back fine, the HPV/dna came back positive for high risk HPV. For various reasons, my doctor didn't make me come back for retesting, she sent me on to a gyno.

I had read a lot about the colpo, biopsy, and ECC prior to my appointment.

As the other ladies said, the colpo was pretty non-eventful. My doctor's exam table seemed lower to the ground than the usual stirrups-table. I got into the stirrups, she swabbed the cervix (didn't feel any different from a pap - actually less noticeable - there was no scraping). Up to this point, the exam felt like a regular ol' pap, before the doctor starts scraping. Then, she moved this machine thingy (the colposcope) closer so she could get a closer view. It looked like some sort of goggles for her to get a closer view. I think, but don't remember, if my doctor projected the image onto a TV screen where I could watch. Some doctors project the images, some don't. The only thing I noticed at that point was that it was taking longer than a pap, but not significantly longer - just noticeably.

I didn't have any atypical cells on my outer cervix so I didn't have any samples taken. Yay! She commented on that and said she was going to do the ECC to check the canal. I think she prepared me for the scrape, but I think she still caught me off-guard. I sat bolt-upright and yelled out (7-8 on a 1 to 10 scale - but it only lasted for a few seconds). It wasn't horrifying, just quite surprising. There was some residual discomfort, but it felt like my period cramps. My period cramps rated probably a 3 or 4 on a 1-10 scale. Later in the day my cramps/discomfort was more like a 1-3 off and on. I took the whole day off, but probably didn't need to.

That was the only procedure I had that day: Colpo and ECC.

My ECC came back "atypical glandular epithelial lesions and adenocarcinoma in situ." Two weeks after the Colpo and ECC I went in for a cold knife cone biopsy. I was under a light general anesthesia for that. At that time my doctor did a second ECC, the CKC, a D&C, and a uterine biopsy. Everything came back fine except for the CKC (adenocarcinoma Ia1 with only one lesion less than 1mm across and 1mm deep).

Back to the colpo and ECC, I took 2 or 3 ibuprofen 30 minutes before my appointment. I also tried to keep my mouth open during the colpo (but must have forgotten for the ECC!). I've read that keeping the mouth open helps keep the muscles in the pelvic floor looser. I've read that some doctors tell their patients to cough right at the time the doctor takes the biopsy. This distracts the patient. I wish my doctor had told me to do that!

My ECC was memorable, but not traumatic. It was over quickly enough. The results it gave back were right on target for what was really going on in my cervical canal. Even though the ECC wasn't fun, I'd have done it every 6 months if I had to for the doctors to catch cancer early. I don't think most doctors do an ECC that frequently, though. The ECC was worth the discomfort, considering the important role it played in catching my cancer so early! I recommend ECCs for women who are over 30 and have tested positive for high risk HPV, regardless of their previous pap history! I think it is THAT important!

Now,

When it comes to HPV testing, if you are already diagnosed with glandular atypia, then I don't know the HPV testing is that important. Most doctors don't use the test that identifies actual strains of HPV; that test is too expensive and there aren't a lot of reasons for knowing the actual number. Treatment doesn't change based on the strain number, just on the damage (like glandular or squamous cell atypia). So actually knowing "yes" or "no" for high risk HPV won't change your treatment options.

re: Local anesthestic
I asked my doctor about this before my colpo. She said the pain/discomfort of having a needle injected into the cervix to numb it is usually as painful (or moreso) than the biopsy or ECC. I suspect she is right. She was right about so many other things.


I think that addresses most of your questions. I know how anxious one is before an unknown procedure, but I can honestly say that my worries and fears were worse than the actual events (except for the quick yelping I did from the ECC).

I hope that helps!

angel4747 04-19-2010 12:32 AM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Hi ladies,

Thank you SO much for your feedback, not only about the tests but about AGUS/AGC as well. I find myself going back and forth between worrying about the tests and worrying about the possibility of cancer, so advice in both areas is greatly appreciated.

It was quite helpful to read about your experiences with the colpo, ECC, etc. I知 so relieved to know that not everyone has a horror story to tell about these tests, although I certainly feel bad for the women who have experienced major pain during them. I hope I知 not one of them! I知 willing (I think) to do the first round of tests with only ibuprofen (800 mg!), but if things go badly, you can be sure I値l demand stronger pain meds the next time I have to get these tests done.

I知 sure I値l have tons of questions throughout this process, and I thank you in advance for your help. Here are a few new questions for you when you have time:

* Is 兎ndometrial sampling different from 兎ndometrial biopsy?

* Can the endometrial biopsy and ECC be performed during the same doctor痴 visit, or does the endo biopsy have to be performed separately?

* How does the doctor prevent the endo biopsy from being contaminated with cervical/vaginal cells when pulling out the instrument?

* My thoughts behind the pelvic/transvaginal ultrasound are that I may need to have my ovaries checked if my initial tests come back OK. I致e read that a small percentage of women with AGUS pap results are diagnosed with cancer of the ovaries or fallopian tubes. Your thoughts?

* Regarding the HPV/DNA test, my thinking is that if the initial tests are negative, it would be helpful (to both my doctor and me) to know whether I have high-risk HPV when making decisions about next steps/future testing. Do you think it might be helpful to know HPV status in that regard? (For some interesting reading, see pages 8-9 of this chart from the American Society for Colposcopy and Cervical Pathology: http://www.asccp.org/pdfs/consensus/algorithms_cyto_07.pdf)

* Although I worry about what the doctor/pathologist will find, I知 also worried about what they WON探 find. I know that sounds odd, but it seems with an AGUS pap, you can稚 be too sure of anything if your results are negative. I have some other unrelated medical problems, and it痴 been my experience that health issues can be very hard to pinpoint. I知 half expecting a cancer diagnosis, and I知 half expecting them not to find anything wrong at all. If you received an AGUS pap result and then were told that the ECC and other tests were negative, what course of action would you take? Get a second opinion? Request additional testing? What tests? Would it change anything if you knew my father died of colon cancer at age 47 and that I had a small skin cancer lesion (basal cell carcinoma) removed from my back when I was 31? I know I知 probably getting ahead of myself, but it makes me feel better to know what my various courses of action will be.

Thanks again for your help!

zoe96 04-19-2010 07:35 AM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Just quickly concerning question about the endo biopsy being contaminated by an infected cervix, the answer is yes. When I had my CKC (cold knife cone) the doc did a D&C, ECC and then the CKC, in that order. The pathology from my D&C showed one small strand of adenocarcinoma, which turned out to be contamination from my doc having gone through my infected cervix.

I assume the endo samping and endo biopsy are the same, although I've never actually heard of it referred to as endo sampling. I don't see why the doc couldn't do the colpo, ECC and endo biopsy on the same day, although I would suspect he/she would have to do the endo biopsy first, since you don't want to go through the cervix after having done th ECC. No matter whether they are done on the same day or at two different times, you are going to run the risk of contamination, since either way you are going to have to go through the cervix to get to the uterus.

I don't believe that any AGUS results on a pap are the result of ovarian problems or tubes. Cervical cells are different than either of those types of cells. I am nearly certain that ovarian cancer cannot be diagnosed through a pap.

I think I posted this earlier in this thread, but most docs will not type someone for hpv other than to look for the presence of a high risk strain. Most of us here have gotten the answer that knowing what strain you have won't change your course of treatment, and therefore it's not covered by insurance. Apparently the dna typing is very expensive, and since the docs can't give any medical justification for performing it, it is not covered. If you are a point where it's watch and wait, the only thing the doc is concerned about is whether or not you are positive for hr hpv, regardless of the strain.

Definitely mention your family history as well as your prior cancer diagnosis, but if the colpo, biopsies and ECC don't show anything, then your doc will probably want to follow you ever six months, perhaps every three. I'd want every three, even if I had to pay for it myself, for at least two years. Unfortunately, short of undergoing more invasive surgery, there is no way to be 100% certain, and the best we can do is take care of ourselves and be faithful with follow ups.

Good luck!

angel4747 04-19-2010 08:55 AM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Hi Zoe,

Thanks so much for your quick reply! I appreciate all your feedback.

I have a couple of questions/comments in response to your post:

* Regarding the HPV test, I’m not really concerned with which strain I have, but I’d like to know whether I have high-risk HPV. What test is used to determine this? Is it expensive and will insurance typically cover it?

* Regarding the link between an AGUS pap and ovarian cancer, I’ve found a number of credible sources that indicate this is a rare possibility. Please know that it’s not my intention to be argumentative.

Again, I really appreciate your taking the time to reply. After reading your post, I fully intend to continue regular paps every 3 months if the initial workup is negative, even if I have to pay for it myself. Thanks so much for that valuable piece of advice!

zoe96 04-19-2010 11:09 AM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Hi Angel --

You are most welcome!

The test for hpv is basically the same process as the pap and most times they're done at the same time, the doc just orders additional testing on the swabs from the pap. If they ordered hpv testing at this most recent pap, it should say so on the report, and having another test this soon isn't going to tell you anything new. I would definitely ask for hpv testing at each of your follow ups, although again the doc might fight you on it. A lot of them say if you have cellular changes, then it's evidence of hpv and therefore they don't need to know if you are positive or not. If your tests all come back negative, perhaps they'll have a different attitude, and of course this all depends on your doc and your insurance, as to whether it will be covered and under what circumstances. I remember seeing the pathology bill for the hpv testing one time, and it was only $85 (before insurance), so even if you get stuck with the bill, it's not horrendous. The type specific hpv testing that will tell you which strain is close to a thousand, from my understanding! Regular hpv testing will just say you are positive for one or more of the following strains, and then list around 13 hr types that are common here in the US (I'm assuming you are in the US!).

I have not heard about any connection between AGUS paps and ovarian cancer, but that certainly doesn't mean that there isn't one. I just never ran into anything through any of my research that showed that, but stuff is changing all the time (most of my research was about a year ago), so if you found something, that's news to me! And no, I didn't think you were being argumentative :) Also, I don't believe that hpv has anything at all to do with ovarian problems, while nearly all cervical problems are related to hpv.

Hope some of this helps!

angel4747 04-19-2010 11:39 AM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Hi Zoe,

Thanks for the explanation about the HPV testing. To my knowledge, no HPV testing was done during my pap test. (At least the doctor didn't mention it when she was doing the test, and the nurse didn't mention it on the phone when she called with my results.) I have requested a copy of the lab results, so I should have them soon. Assuming the HPV test wasn't done, I'm hoping the OB/GYN will do an HPV test while performing the other procedures. Is there a specific name for the inexpensive/non-specific HPV test? I want to make sure I have the correct terminology when speaking with the doctor.
Thanks so much!

zoe96 04-19-2010 04:37 PM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
I don't know any specific name for the regular hpv testing, other than to say you want to be tested for high risk hpv. I *think* they can even order the test on a recent sample. When I was discussing/arguing about wanting to be typed for what specific strain I had, my doc and I were discussing ordering the testing on what was taken during my surgery -- in other words, on tissue that had been taken a week earlier. Maybe I'm remembering that one wrong, but anyway, your doc should be able to take a swap during the colpo and have that sent out for hpv testing.

It's good you are getting your path reports, and do specifically ask your doc if they already did the hpv testing. They may just not have mentioned this when the reported your results to you. Also, many labs take significantly longer for the hpv testing, so your doc may not even have had those results when they called you. I know where I go I get pap results in about 3 days, but the hpv is a little more than a week. I have no idea why!

angel4747 04-20-2010 10:03 AM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
Hi Zoe,

Thanks for your reply about the HPV tests. I appreciate it!

In a previous post you said, "I would definitely ask for hpv testing at each of your follow ups."

Can you elaborate more on this when you have time? Just curious in case my doctor asks me to explain the reasoning behind it.

Thanks!

zoe96 04-20-2010 02:09 PM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
My reason for asking for hpv testing at each follow up is this: mostly for peace of mind. If you are negative for hpv, then there is practically no risk of any dysplasia/cellular changes. Now, a lot of docs will say well, if there's no dysplasia/clean pap, et cetera, then you have nothing to worry about and therefore they won't do an hpv test. Well....to me, I like the added comfort of knowing that there is also nothing there that *can* cause those things! I guess depending on your insurance (I hate to keep bringing it up, but that seems to be the #1 reason docs give for not doing an hpv test, saying it's not necessary and therefore not covered by insurance), the testing may not be covered if you have no signs of a problem.

My doc and I have discussed this, and we agreed that although I have paps every three months, I only get hpv tested every six, as long as my paps continue to come back clean, which thankfully they have! I have also tested negative for hpv since my original surgery. Part of my doc's argument was well, the hpv may show up again at some point, and knowing you are positive will do nothing but make you worry, and since we are keeping a close eye on you, we won't let anything happen. Yeah, well, I love him but I don't like that argument. My feeling is if the hpv ever comes back, I want to know ASAP so perhaps I can make some lifestyle changes or do something to make me feel like I'm doing something to keep it at bay (get more sleep, work less, eliminate whatever stress may be affecting my immune system, et cetera).

So, the most important thing is to do the colpo and ECC and keep up with your paps....but getting negative hpv results goes a long way toward peace of mind :)

angel4747 04-20-2010 03:06 PM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
I hear ya, Zoe! I'm all for peace of mind. Your line of thought makes perfect sense to me. Thanks for the explanation!

I just got some good news, at least relatively speaking. I talked to the nurse about my results again (they haven't been mailed to me yet because the doctor was on vacation last week). Anyway, I asked her if an HPV test was done during the pap. She said it wasn't done initially, but when the AGUS pap result came back, the lab automatically does an HPV test, and mine came back negative!

While I'm a bit relieved, I also realize that it's possible I had HPV in the past which has since cleared but is now causing glandular changes. Is that correct?

What are your thoughts on the fact that my initial AGUS sample came back negative for HPV?

Pickle Eyes 04-20-2010 06:17 PM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
From what I've read, the HPV/dna test (which requires a separate swab and can be done at the same time as a pap) has a higher accuracy rate than the HPV test that labs run on tissue taken "just" for a pap. I can't remember who told us that, but it was a woman on this board.

I had my forgetfulness!

zoe96 04-20-2010 06:48 PM

Re: AGUS/AGC pap results - questions about ECC & endometrial biopsy
 
[QUOTE=angel4747;4229751]

While I'm a bit relieved, I also realize that it's possible I had HPV in the past which has since cleared but is now causing glandular changes. Is that correct?[/QUOTE]

I believe the answer is yes, you can have cellular damage caused by hpv yet test negative for hpv, meaning you have since cleared or suppressed the infection, but unfortunately not before it was able to wreak a little havoc with your cervix :( Being negative for the virus is a good sign though that your body's defenses are kicking in! Now let's hope your colpo and ECC reveal nothing but healthy tissue!!


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