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Cancer: Cervical & Ovarian Message Board


Cancer: Cervical & Ovarian Board Index


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
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.
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 pissed 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.
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!
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!
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!
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!
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!
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!
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!
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 :)
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?
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!
[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!!
[QUOTE=Pickle Eyes;4229864]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.[/QUOTE]

I'm not sure if this what you are referring to, but the Qiagen/Digene "Hybrid Capture 2" is the test that uses the pap smear sample, and the strain specific uses the "PCR" method, though I really have no idea what the different methods entail, but they actually both have limitations. The PCR testing is more sensitive, but it seems like most doctors seem to prefer the Qiagen because it has a better predictive value for who needs follow up.

The Qiagen requires 5,000 copies present to be postive. They do that purposefully so that minor, unimportant infections do not cause a positive result.

PCR testing is much more sensitive, but apparently that testing method does not pick up HPV DNA that has integrated with the cellular DNA. So PCR testing has the downside of possibly producing negative results in women who has advanced cancer, and possibly missing precancers as well.

So for angel, I would definitely recommend asking your doctor what type of HPV test you had.

As for thoughts on why is was negative...well aparently AGUS paps can be caused by things like cysts or polyps. Also, endometrial glandualar cell changes are not caused by HPV, so deinifelty you will want the endometrial biopsy, but I think non-cancer endometrial abnormalities like endometriosis can cause AGUS paps.
Hi there,
I am going through the exact same thing as you. I got a pap that said AGUS nos, I got an ECC and Endo biopsy, plus colposcopy. The pain is determined by the method your doc uses. I asked for the Cytobrush for the ECC...much less painful, but still campy. I just had the ECC 2 days ago. The first one came with CIN 1, my endo was normal. Then my pap came back again with AGUS, Favor Neoplastic. Not good. the last ECC I had on Tuesday hurt a bit more. It is nothing to be scared about though. Take some Ibuprofen. Now, the Endo biopsy is a little more painful. Again it is helpful to know what method is being used. My doc used the Tao Brush. The worst part was when they put the tube into the cervix. The biopsy itself was a bit crampy. My cervix wouldn't open, so they were going to use forceps. I was like "No thanks, just keep trying please!". When it went it it did hurt, for 3 seconds, then he put the brush in and scraped the uterus, which honestly didn't hurt much at all.
I am scared to death. I cannot concentrate on work at all. I am terrfied. I have ovarian cysts that are causing me problems as well. Arrgh! I want the results back so bad.
Thanks to everyone for sharing your knowledge about HPV testing and non-cancerous causes of AGUS pap results. I really appreciate it!

I received a copy of the lab report, and it says this:

[I]HPV High Risk DNA test. SurePath liquid based specimen

Findings: Negative for High-Risk HPV Types 16, 18, 31, 33, 35, 39, 45, 51, 52, 56, 58, 59, 66, 68

Note: Analyte-specific reagents (ASRs) are used in certain laboratory tests necessary for standard medical care and generally do not require FDA approval. This test was developed and its performance determined by Regional Medical Laboratory. It has not been cleared or approved by the U.S. Food and Drug Administration.[/I]

Does this type of testing mean anything to anyone?

Also, the lab report says, [I]"Fungal organisms morphologically consistent with Candida spp."[/I] The nurse did not tell me about this on the phone for some unknown reason, but it is not surprising to me because I have a chronic yeast problem due to a medication I take for other health problems. I take acidophilus supplements and use acidophilus creams to keep it in check, but it's not likely to go away.

Does anyone know whether a chronic yeast infection (over the course of years) could cause reactive changes in the glandular cells of the cervix that might show up as "atypical glandular cells" on a pap test? Obviously, I'm still planning to get thorough testing for cancerous causes, but I'm curious whether the candida could be playing a part in this. Your thoughts?

KOSM: I'm sorry to hear what you're going through. I appreciate you sharing about your experiences with the ECC and endo biopsy. The OB/GYN's office said they use a "new method" for the endo biopsy, so I'm hoping it's the Tao brush. With the cytobrush for ECC, do most OB/GYN offices keep this in stock so I can ask for it when I get there?

Thanks again, everyone!
Hello!
I have heard that Yeast Infections can mess with pap results, I don't remember where I heard it though and don't know if the info was true. They are trying to diagnose me as well with those gladular changes. I will let you know my bio results this week. As far as the Tao Brush, it comes togther with the Cytobrush. It comes in a kit called the TruTest kit. So, if they use the Tao brush, they will likely use the Cytobrush as well. I hear the Cytobrush is more accurate than the currette for an ECC because it gets cells from all areas of the cervix, whereas the currette only gets one spot. The cytobrush honestly is not that bad at all as far as pain goes. When I found out I needed it done again, I wasn't the least bit nervous because it honestly was no big deal. Definitley caused cramps! The company who makes the TruTest kit is called Gynecore. I called them before my test and asked if they supplied my doctor, they said yes. They were so helpful!

By the way, your result said AGUS, undetermined significance, correct? That is less worrisome than the words "Favor Neoplastic". Your results could be the result of a reactive process, which is benign. That doesn't mean to relax, because AGUS is till associated with a higher risk of premalignancies or malignancy, but not as bad as what my results were, which says "Favor Neoplastic". Favor Neoplastic means more than likely a malignant process. :(

My results went from being AGUS Unknown signifiance to favor neoplastic within 8 months, so don't mess around. Get the tests done and you will feel lots better. Goodluck, I will say a prayer for you! Let us know how things go!
Well, I finally got my tests done on Thursday. It wasn't easy, but I'm thrilled to have it over with.

As expected given my AGUS pap result, I had a colposcopy with 2 biopsies, an ECC, and an endometrial biopsy. I didn't feel much pain at all with the first two procedures (thank goodness!) and the doctor didn't have any trouble moving the instruments through the cervical canal, but the endometrial biopsy itself was quite painful. The pain was far more than "bad cramps" as I've heard it described. Unfortunately, I think they used the pipelle method rather than the Tao brush, so perhaps that's the reason for the high level of pain. The doctor started the biopsy and said "I'll need to do this for about 30 seconds." And I said, "OH OH OH (in pain)...30 seconds, really? Please hurry, hurry, hurry!" I think she stopped after 15 seconds, thank goodness, because I'm not sure how much more I could have taken. Hopefully the sample was large enough, because I definitely don't want to have that done again!

Unfortunately, the doctor said she saw two white spots on the outer cervix/transformation zone during the colposcopy. She said they weren't "overly concerning" and that "they might be something or might be nothing." She biopsied both sites, so we'll see. I'm pretty bummed about that, but I guess I'll be thankful if they can find the problem quickly so this doesn't turn into a never-ending "treasure" hunt.

It's still possible that the spots she saw were yeast patches, given that my pap results showed Candida. After my last post, I actually contacted the pathologist to ask if Candida could cause the AGUS pap results. He was extremely helpful and said it was definitely possible, and that Candida could affect squamous cells too. I'm still hopeful that yeast could be the culprit, but my gut says this probably isn't the case. I hope the test results come back quickly next week so I don't have to wait much longer to find out.

In answer to a previous question, my PAP results showed "atypical glandular cells" only, with no mention of "favor neoplastic." That's somewhat reassuring, but I know an AGUS pap of any type is pretty concerning. My OB/GYN is taking it very seriously and plans to continue an aggressive workup if needed, so I think I'm in good hands. Depending on what comes back from the recent biopsies, I may still consult with a gyn oncologist for a second opinion before going any further.

Thanks again for all your help and support!
Glad that you got all of that done and over with. Sorry it was so painful. I definitley think the method has a lot to do with it. If it was the Tao Brush, you would have seen a brush that looks similiar to a really big mascara brush, but white. The Pipelle, I believe, uses a suction method of taking cells. The Tao brush is simply a scraping that takes all of about 10 seconds. But for me, that tube that guides the brush in is what caused me the most pain for the whole thing. Feels good to get these things over with.
Not having that "Favor neoplastic " qualifier is a good thing. I had a friend who had AGUS like you, had the biopsies and it was truly nothing at all. Then again, it could be something so you do need to get checked, which you have, and soon you will have more information. To reassure you, my ECC results came back with CIN 1, cannot rule out High grade lesion. The endometrial biopsy came back normal. I started taking Pro-biotics because I heard the same thing you did, that yeast can cause this result. So, I took the pro-biotics and my last ECC came back no CIN, just rare atypical cells. However, another pap showed favor neoplastic, which is bad. I also had an ultrasound done. Ttally painless, and if you have a massive tumor, it will show it.
If they cannot diagnose the cause of your glandular abnormalities, your next step may be a cone biopsy. I gotta have one of those in June. Not looking forward to it.:(
Hi ladies,

Last week I got my biopsy results, and given the previous AGUS pap test, I think it's the best result I could've hoped for!

I don't have a copy of the pathology report yet, but here's what the nurse told me:

[LIST]
[*]Cervical biopsies: atypical squamous metaplasia
[*]ECC: focal reactive atypia
[*]Endometrial biopsy: negative!
[*]Note: Benign cellular changes
[/LIST]

From what I understand, the metaplasia noted in the cervical biopsies has nothing to do with dysplasia, and only represents an area of the cervix where the cells change over from squamous to glandular.

When I talked to the nurse, she said the doctor was planning to talk with the pathologist to ensure that these results match up with the AGUS pap result, given that there was nothing mentioned about glandular cells in the pathology report. It's been almost a week since they got the results and I haven't heard back yet, so I think this is probably a good sign. If I haven't heard back from the doctor by later this week, I'm planning to give her a call to find out what the game plan is. I'm assuming I'll still need to be followed closely by repeat pap tests, but we'll see.

After my previous conversation with the pathologist, I feel pretty confident that the benign atypical cells (both glandular and squamous) could have been caused by my 4-year bout with chronic yeast infections. The 2 "suspicious" cervical biopsies were taken from the transformation zone, so both glandular and squamous cells could be affected in this area. Also, if there were atypical cells found on the ECC, I assume those must have been glandular since I'm under the impression that the cervical canal is made up of glandular cells. (Don't quote me on this though!)

If you ladies have any concerns or comments about the above, I'd welcome your feedback! I definitely want to make sure I have all my bases covered.

Thanks again for your support during this extremely stressful time. I feel so relieved and fortunate that things are looking up!

Angel
I really cant comment about the ECC however, I found out yesturday I have to have one June 8th. My doctor said it is like having a the procedure colposcopy (sp??) which I have had at LEAST four times. My experience with that was fine. A little cramping and spotting after. It felt like cramps! I take ibuprofen 800mg before I go. So if the ECC is anything like getting pieces of your cervix snipped...you can do this!!! If I can anyone can (I am a big baby!). I will say a prayer for us both.
Angel, I've read your posts with great interest as I has atypical glandular cells with a Pap in Jan. Following this, Ive had a colposcopy, d & c, LEEp, cone, and ultimately a hysterectomy on May 28. I am wondering about those glandular cells and although everyone, including my gyn-onc was convinced the hys would end my troubles, I have been diagnosed with a rare gynecological cancer known as adnoma malignum or minimally deviant adenocarcinoma. I hope all has gone well for you and if you get a chance, tell me of your hopeful progress. I was anxious about the glandular cells from ther beginning asnd I suppose, my fears have been confirmed.
Hi Ladies,
I have been reading your posts since my last pap in Feb showed AGUS favor neoplastic. I have had a colonsocopy, biopsies, an ultrasound, and a cold knife which were all normal. I don't go back to the gyn for 6 months to have another pap, ECC, and colonoscopy. Is there anyone else who has had AGUS and the cause was not found? I have read a lot and know that the cells may come from outside the reproductive tract. I also had a pap which showed AGUS six years ago.
Donna
I have the exact same thing...well, kind of...mine said atypical endocervical glandular cells, favor neoplastic. They cannot find the cause. My endometrial biopsy was normal. ECC showed CIN 1, which later regressed and said reactive. I had an MRI because of pain which showed I have Adenomyosis. Adenomyosis is endometriosis taht is inside the muscle of the uterus (myometrium). It causes excess gland cells to show up but still my doc doesn't think it caused the pap result. I am pretty scared as well. I have heard that in rare cases this can result from someone going on with other organs, such as the colon. I would request a pelvic/abdominal MRI with contrast. That should rule out any malignancies. Maybe a few blood tests (CA-125). Was the cone surgery real bad? What is there next step with you? I feel for ya! Will keep you in my prayers!
Thanks for your reply. My CA125 is slightly elevated. I have asked for an abdominal ultrasound but my gyn won't order one since my cone biopsy was normal. She said that the abdomen isn't her area and she wouldn't know what to do with the results anyway. I do have endometriosis but haven't been told if this could be the cause of the agus favor neoplastic.....so far I have no idea where the abnormal cells are originating from. The cone wasn't nearly as bad as I thought it would be. I thought the bleeding would be quite heavy but it wasn't. I had a brown discharge for about 4 weeks. I didn't need any pain medication. I have been having trouble with acid reflux for months now. I had a gastroscopy done and see my dr on Fri for results. I don't go for further testing until Nov which will be more than a year since my original diagnosis. Then she will do a repeat pap. ECC and colposcopy. I had a colonscopy a year ago since colon cancer runs in my family. Are you having a cone? ...what is next for you? Thanks again for responding to my post. It isn't easy to find someone else who has this diagnosis. I will keep you in my thoughts and prayers too.
I would take comfort in the fact that you had a normal Cone biopsy. They are very accurate!! I would have another endometrial biopsy and also an ultrasound to see if your endometrial stripe is normal. You could have hyperplasia. When I complained of pelvic pain, no one took me that seriously (and the pain was reallly bad), so finally I went to a gastroenterologist and he ordered the pelvic MRI for me. It was very helpful and I really think that would help you too. The MRI would show any tumor formation, or any other abnormalities as well. I would insist on one! My cone is supposed to be Wednesday, not looking forward to it. Not to mention my period is a week early and I am not sure I can have the procedure while on my period. Ugh!! I am so sick of this
Good luck with your cone. I hope you can get it overwith. I had a virus in my chest and the gyn postphoned mine for 3 weeks until I had a lung CT. I know how awful the waiting is. I am with you ....I am sick of this too. My Agus favor neoplastic pap was at the end of Feb. and I got the results the end of March. Life has been very uncertain since then. How long have you been dealing with this? Let me know how you make out. I'll be thinking of you.
Hi Donna,
I have been trying to keep sane by praying and leaving it with God, but it isn't easy. I Google too much info and end up getting myself worked up. I tried to Private Message you but it wouldn't work! Send me a private message if you want to talk. It is really hard to find someone else with this diagnosis. I got my results in January. :(
Another thing, I really think you should insist on an MRI. If she won't order one, another doctor will. It WILL give you answers and it is an easy procedure.
I have also tried to send you a private message and I can't get it to work either. My original pap with AGUS was in Oct. but it changed to neoplastic in Feb. In Canada there seems to be a wait and see what happens attitude. I went to see an oncologist/gyn and he said that I didn't need anymore testing done and to go back to my gyn in 3-4 months. However, she isn't seeing me for 6 months. If I still have the same results then she will look further. She told my dr. she doesn't think I have anything to worry about....easy for her to say. Good luck with your surgery tomorrow. I'll be thinking of you. Keep me posted.
Hi Donna,
I almost got a message to you but it said that you were not set up to receive private messages. Did you check your settings? I will look in the help area! Would like to talk to you! I got my AGUS in October and by January it turned to neoplastic
First of all my name is nahi. I unfortunately went through all these procedures without knowing, once you are at tht doctor's office he askks you if u feel any pain. I Had a colcoscopy done and biopsy also endovaginal ultrasound all of these procedures were painless. I did not care about the pain. What I do really care is waiting for the results. In these days I will be under a sedation for endometrium exam and vaginal biopsies. I had already have a cervical biopsy. Six pieces of tissue were taken from my cervix did not feel any pain. My doctor put some spray so as not to feel any pain and told me to relax the muscles close my eyes and think about something pleasant . Try to imagine yourself at the beach running without having to go under these procedures. I know it is hard but it helps think you will be done one day. I am working hard on thinking that nice things will happen

hugs
I am sorry for what you are going through. I have the same diagnosis. But I will tell you I had an endovaginal ultrasound it was not painful at all. Two biopsies taken from different places of the cervix like 6 samples no pain at all. I also had pap smears colposcopy and ECC no pain until now. My next step is another biopsy and possibly a cone biopsy. I hope not to have an hysteroctomy. Even if I am 45 and not plannning on kids.

best of luck to u and don't worry there is no other worse pain than waiting and waiting
that is the only pain I felt even though I have a great health insurance.
Mine came back AGCUS so..... Colposcopy, Endometrial Biopsy, Endocervical Biopsy and Cervical Biopsy.

Endometrial came back normal, Endocervical came back normal but the Cervical came back mild dysplasia. We are at the watchful waiting stage and I am a nervous wreck. I freak out over every burn, ache, itch or cramp. I am a total psycho :)

Thank you SO much for responding...... Seems like that there is never any good news here!

I go back in July for a follow up pap. Wish me luck and PLEASE keep me in your prayers. I will do the same.

God Bless - Teresa
I can understand why you're a nervous wreck. I would be too!

I'll be sure to keep you in my thoughts and prayers. Please let us know how things go in July.





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