Atypical Glandular Cells of Undetermined Significance
March 11, 2011 9:49 AM Subscribe
My wife's PAP just came back showing "atypical glandular cells of undetermined significance". We are both concerned, and I'm having a hard time finding any useful information about what this is likely to mean in terms of prognosis, treatment, etc... So far, everything I've found has been either too superficial to be helpful or too dense to understand. Can anyone point us to some fairly in-depth information that won't overwhelm us with medical-speak? At this point, we're both scared, and any information at all would be very much appreciated. Thanks.
From what I've just read in a brief perusal of links just now -- and based on my own experience with wonky PAP's -- you're pretty much going to be okay.
A brief "cervical health 101" -- the PAP just takes a sample of the cells on the cervix and looks at them. What's important to know is -- there is a huge range between "totally normal, you're fine" and "whoa shit this is officially now cancer", and if you're at step 1 on the "this is starting to look abnormal" scale, it would take years to get to the "whoa shit cancer" end of the scale.
What happened to me when I got my abnormal PAP smear is -- I had to go get a slightly more intensive scan, the colposcopy, which involves putting vinegar and/or iodine on the cervix. Any abnormal cells react to that, which lets your doctor see where the abnormal spots are. I've had to get a couple of these -- I'm due for another one, in fact -- but each time I've gotten one, the doctor reviewing things says "oh, that's tiny, that should be nothing. I'll take a biopsy just in case, but that should go away on its own." Both times, they did a biopsy and found that it wasn't worth worrying about -- all it meant was I had to go back in for another pap test in a year's time, rather than waiting three years.
if they HAD found anything, they can treat it sort of like how they freeze off warts -- freeze-drying the affected area and shaving it off. Everything I've heard about this indicates that it's not the most fun day, but it's not wildly painful or debilitating.
Now -- the thing about "atypical glandular cells" that I've read sounds like it's a bit more trickier to figure out what's going on; because the cells they've picked up that aren't normal are from further inside the cervix, rather than being right on the outside where they can easily see what's going on. But from what I'm seeing (on my admittedly brief persual of some links) is that you're still looking at a "colposcopy with maybe an extra biopsy" to get a closer look at things.
Good luck. It sounds scary, but you are actually in a fairly okay place.
posted by EmpressCallipygos at 10:07 AM on March 11, 2011 [1 favorite]
A brief "cervical health 101" -- the PAP just takes a sample of the cells on the cervix and looks at them. What's important to know is -- there is a huge range between "totally normal, you're fine" and "whoa shit this is officially now cancer", and if you're at step 1 on the "this is starting to look abnormal" scale, it would take years to get to the "whoa shit cancer" end of the scale.
What happened to me when I got my abnormal PAP smear is -- I had to go get a slightly more intensive scan, the colposcopy, which involves putting vinegar and/or iodine on the cervix. Any abnormal cells react to that, which lets your doctor see where the abnormal spots are. I've had to get a couple of these -- I'm due for another one, in fact -- but each time I've gotten one, the doctor reviewing things says "oh, that's tiny, that should be nothing. I'll take a biopsy just in case, but that should go away on its own." Both times, they did a biopsy and found that it wasn't worth worrying about -- all it meant was I had to go back in for another pap test in a year's time, rather than waiting three years.
if they HAD found anything, they can treat it sort of like how they freeze off warts -- freeze-drying the affected area and shaving it off. Everything I've heard about this indicates that it's not the most fun day, but it's not wildly painful or debilitating.
Now -- the thing about "atypical glandular cells" that I've read sounds like it's a bit more trickier to figure out what's going on; because the cells they've picked up that aren't normal are from further inside the cervix, rather than being right on the outside where they can easily see what's going on. But from what I'm seeing (on my admittedly brief persual of some links) is that you're still looking at a "colposcopy with maybe an extra biopsy" to get a closer look at things.
Good luck. It sounds scary, but you are actually in a fairly okay place.
posted by EmpressCallipygos at 10:07 AM on March 11, 2011 [1 favorite]
I would call the American Cancer Society (note: this does NOT mean she has cancer, they just have tons of info related to screening, and pre-cancer information, too) because they have non-medical people who have a grasp of this information and will explain it to you in layman's terms. 800-227-2345. You can also find information on their website here.
IANAD, but often with an abnormal pap, the next step is a colposcopy (where they look at the cervix with this special viewer thing, and sometimes put a solution wash on the cervix to make the abnormal areas easier to see/biopsy. I've had a colposcopy and cervical biopsy, not from an abnormal pap, but for something else. If she ends up needing that and has any questions, feel free to memail me.
posted by elpea at 10:08 AM on March 11, 2011
IANAD, but often with an abnormal pap, the next step is a colposcopy (where they look at the cervix with this special viewer thing, and sometimes put a solution wash on the cervix to make the abnormal areas easier to see/biopsy. I've had a colposcopy and cervical biopsy, not from an abnormal pap, but for something else. If she ends up needing that and has any questions, feel free to memail me.
posted by elpea at 10:08 AM on March 11, 2011
My experience with atypical glandular cells of undetermined significance led to a diagnosis of ovarian cancer. Your wife's doctor should send her for a transvaginal ultrasound, a CA-125 blood test (tumor marker for ovarian cancer), plan for a colposcopy, and potentially an endometrial biopsy. (These are all the tests that were planned for me; I didn't have a colposcopy or endometrial biopsy because the ultrasound showed complex ovarian cysts which led to a CT scan and referral to a gyn/onc.)
Do push for follow-up. You may be told that ovarian cancer can't be found through a pap test (and it can't) but myself and several other women I know were guided to our diagnosis with an AGUS pap result. Memail me or email me at alicia dot merchant at gmail dot com if you want to speak further.
posted by Felicity Rilke at 10:08 AM on March 11, 2011 [1 favorite]
Do push for follow-up. You may be told that ovarian cancer can't be found through a pap test (and it can't) but myself and several other women I know were guided to our diagnosis with an AGUS pap result. Memail me or email me at alicia dot merchant at gmail dot com if you want to speak further.
posted by Felicity Rilke at 10:08 AM on March 11, 2011 [1 favorite]
IANAD, but IA a woman who has had nothing BUT irregular Paps for a decade:
Here's the rub: in some other countries, where women do not get regular Paps, cervical cancer has a reputation as a horrible, scary death sentence. In the U.S., cervical cancer - while serious! - does NOT have that reputation. Why? Because of two things: 1. Cervical cancer is GENERALLY very, very slow-progressing. 2. Our current guidelines (yearly Paps for all, follow-ups on any weird findings) mean that the overwhelming majority of women who get regular Paps will have any incipient cancer detected long before it becomes cancer - before it even THINKS about becoming cancer, in fact.
Your wife's diagnosis - and again, IANAD - sounds similar to one that I have received ("atypical squamous cells of undetermined significance"). As it was explained to me, this meant exactly what it said: that some of the squamous cells in my Pap hadn't looked typical, and that further tests were needed to determine what this meant. It didn't mean "cancer", it didn't mean "no cancer" - it just meant that they needed to check stuff out a little further.
The first step for a LOT of abnormal Paps is a colposcopy, which is like a cross between a super-Pap, a mini-biopsy and being on JumboTron. A doc extracts teeny little tissue samples from any suspicious-looking areas on the cervix while examining it with a big ol' viewing device (they let me watch, too!). While uncomfortable, the procedure is NOT horrible (although the recovery period can get icky).
The next steps vary depending on the results of the colposcopy. Often, they'll just want you to come back for another Pap in six months to make sure things are holding steady. Sometimes, if they detect deeper levels of cellular change, they'll recommend that a cone of tissue be extracted from the cervix (usually via a LEEP procedure). This is slightly more serious surgery than the colposcopy, but it's nonetheless still generally a safe, minor procedure without a grueling recovery period. After any further surgery, they will, of course, recommend follow-up visits on a pretty regular basis until the Paps start coming back normal.
I hope this may have helped soothe your fears a bit... really? Honestly? IF your wife has been getting regular Paps, it's very very very VERY unlikely to be a big deal, and even if it IS a big deal, it's a MUCH smaller big deal - in terms of risk, pain, etc. - than "we saw a mass on your x-ray" or similar things.
posted by julthumbscrew at 10:09 AM on March 11, 2011 [1 favorite]
Here's the rub: in some other countries, where women do not get regular Paps, cervical cancer has a reputation as a horrible, scary death sentence. In the U.S., cervical cancer - while serious! - does NOT have that reputation. Why? Because of two things: 1. Cervical cancer is GENERALLY very, very slow-progressing. 2. Our current guidelines (yearly Paps for all, follow-ups on any weird findings) mean that the overwhelming majority of women who get regular Paps will have any incipient cancer detected long before it becomes cancer - before it even THINKS about becoming cancer, in fact.
Your wife's diagnosis - and again, IANAD - sounds similar to one that I have received ("atypical squamous cells of undetermined significance"). As it was explained to me, this meant exactly what it said: that some of the squamous cells in my Pap hadn't looked typical, and that further tests were needed to determine what this meant. It didn't mean "cancer", it didn't mean "no cancer" - it just meant that they needed to check stuff out a little further.
The first step for a LOT of abnormal Paps is a colposcopy, which is like a cross between a super-Pap, a mini-biopsy and being on JumboTron. A doc extracts teeny little tissue samples from any suspicious-looking areas on the cervix while examining it with a big ol' viewing device (they let me watch, too!). While uncomfortable, the procedure is NOT horrible (although the recovery period can get icky).
The next steps vary depending on the results of the colposcopy. Often, they'll just want you to come back for another Pap in six months to make sure things are holding steady. Sometimes, if they detect deeper levels of cellular change, they'll recommend that a cone of tissue be extracted from the cervix (usually via a LEEP procedure). This is slightly more serious surgery than the colposcopy, but it's nonetheless still generally a safe, minor procedure without a grueling recovery period. After any further surgery, they will, of course, recommend follow-up visits on a pretty regular basis until the Paps start coming back normal.
I hope this may have helped soothe your fears a bit... really? Honestly? IF your wife has been getting regular Paps, it's very very very VERY unlikely to be a big deal, and even if it IS a big deal, it's a MUCH smaller big deal - in terms of risk, pain, etc. - than "we saw a mass on your x-ray" or similar things.
posted by julthumbscrew at 10:09 AM on March 11, 2011 [1 favorite]
Sorry, I missed the part about glandular and not squamous cells. That may make a difference. I would especially recommend calling ACS and having someone who is trained in sharing this information talk to you about it in more detail (please note, though, they are not medical professionals).
posted by elpea at 10:11 AM on March 11, 2011
posted by elpea at 10:11 AM on March 11, 2011
IANAD. There are a number of different kinds of abnormal Pap results, with different implications.
First, take a deep breath. I know firsthand that it is scary to get an abnormal Pap result back, it's happened to me more than once. It's not possible to predict what will happen in your wife's case, but I can share my experience. The first time I had an abnormal pap result, I went back in for a Colposcopy. The second time my OB had me come back in for another pelvic exam, re-did the Pap, and got a normal result the second time.
I know it is stressful, and I do not mean to dismiss your feelings, but I want to emphasize that the really important thing here is that your wife is getting medical care, and if there is actually anything to be concerned about (and it is too early to know that) it won't go unrecognized and untreated.
On preview, I see I have a lot of company in the "abnormal pap" department. I hope that gives you a little comfort.
posted by ambrosia at 10:11 AM on March 11, 2011
First, take a deep breath. I know firsthand that it is scary to get an abnormal Pap result back, it's happened to me more than once. It's not possible to predict what will happen in your wife's case, but I can share my experience. The first time I had an abnormal pap result, I went back in for a Colposcopy. The second time my OB had me come back in for another pelvic exam, re-did the Pap, and got a normal result the second time.
I know it is stressful, and I do not mean to dismiss your feelings, but I want to emphasize that the really important thing here is that your wife is getting medical care, and if there is actually anything to be concerned about (and it is too early to know that) it won't go unrecognized and untreated.
On preview, I see I have a lot of company in the "abnormal pap" department. I hope that gives you a little comfort.
posted by ambrosia at 10:11 AM on March 11, 2011
I'm far from a medical expert, but I've come to really like Lab Tests Online. The site seems good about explaining both tests and results.
Here is the PAP results page.
posted by sardonyx at 10:13 AM on March 11, 2011
Here is the PAP results page.
posted by sardonyx at 10:13 AM on March 11, 2011
I just want to strongly reiterate that AGUS needs to be followed up with screening for ovarian cancer. Yes, there is a small chance that this is ovarian or endometrial cancer, but they are very real possibilities. I don't think now is the time to not worry -- use this moment of fear and concern to push for answers, and push to get them quickly.
posted by Felicity Rilke at 10:13 AM on March 11, 2011
posted by Felicity Rilke at 10:13 AM on March 11, 2011
On preview: oof! That is excellent info, Felicity Rilke - I was totally unaware of the potential ovarian cancer/AGCUS result link. It's up to your doc to decide how to proceed, of course, but as someone who has to get CA-125s and transvag U/Ss ALL THE DAMN TIME (for something else), they are both super-fast, relatively-cheap procedures, so if you have insurance, it won't be a big deal to get those tests ASAP.
posted by julthumbscrew at 10:14 AM on March 11, 2011
posted by julthumbscrew at 10:14 AM on March 11, 2011
Most people aren't aware of the connection because women are always told that ovarian cancer can't be detected through a pap test. But I and at least five other women I know wouldn't have found out about our ovarian cancers when we did if it wasn't for pap smears with atypical glandular cells of unknown significance, and doctors who knew to screen for ovarian cancer with those results. And for what it's worth (I don't know the age of the poster's wife), everyone I know who had AGUS+ovarian cancer was under 50 (not menopausal).
posted by Felicity Rilke at 10:19 AM on March 11, 2011 [1 favorite]
posted by Felicity Rilke at 10:19 AM on March 11, 2011 [1 favorite]
This really is something that your doctor should talk to you about.
When you have a smear you have a brush-full of cells to look at. The cells are on their own, so you don't have a way to find out exactly where they come from, you can't tell the size of the area affected by the problem. A smear with an abnormal result is a "Hey! Look at me! I need investigating!" - until you have that investigation, that's all you really have.
A very low percentage of women with abnormal smears turn out to have cancer - in the UK it's around 2%. You want to get it investigated, definitely, as there are other things that it can be flagging up, but the odds are in your favour.
posted by Coobeastie at 10:26 AM on March 11, 2011
When you have a smear you have a brush-full of cells to look at. The cells are on their own, so you don't have a way to find out exactly where they come from, you can't tell the size of the area affected by the problem. A smear with an abnormal result is a "Hey! Look at me! I need investigating!" - until you have that investigation, that's all you really have.
A very low percentage of women with abnormal smears turn out to have cancer - in the UK it's around 2%. You want to get it investigated, definitely, as there are other things that it can be flagging up, but the odds are in your favour.
posted by Coobeastie at 10:26 AM on March 11, 2011
This study (which is fairly medically dense, but not the worst) states that an AGC result should be followed up more aggressively than ASC (atypical squamous cell) as there is an increased risk of high-grade neoplasm.
Here is an older abstract which also states that AGC on a cervical smear test is a marker for significant gynecologic neoplasia.
And finally, this article which says more of the same: "The high risk of neoplasia associated with the diagnosis of AGC, favor neoplasia demands aggressive management..."
From what I understand, AGC pap tests only account for about 1% of all abnormal pap tests, so take advice from others who have had abnormal paps with a grain of salt. Most women will not have had an AGUS pap result.
I hope this helps (though I wish I was able to find you something more layman-like to read).
posted by Felicity Rilke at 10:57 AM on March 11, 2011
Here is an older abstract which also states that AGC on a cervical smear test is a marker for significant gynecologic neoplasia.
And finally, this article which says more of the same: "The high risk of neoplasia associated with the diagnosis of AGC, favor neoplasia demands aggressive management..."
From what I understand, AGC pap tests only account for about 1% of all abnormal pap tests, so take advice from others who have had abnormal paps with a grain of salt. Most women will not have had an AGUS pap result.
I hope this helps (though I wish I was able to find you something more layman-like to read).
posted by Felicity Rilke at 10:57 AM on March 11, 2011
Understanding Abnormal Pap Test Results from the American College of Obstetricians and Gynecologists seems like a pretty good layman's level rundown of what different Pap results mean, and yes, the AGC sounds more serious than the average abnormal smear.
Please make sure you guys follow up on this with her doctor! I recently heard that 30% of women do not respond to requests for follow-up on an abnormal smear. But good things will come of following up; either she'll get the treatment she needs, or your minds will be put at ease.
Good luck!
posted by mskyle at 1:03 PM on March 11, 2011 [1 favorite]
Please make sure you guys follow up on this with her doctor! I recently heard that 30% of women do not respond to requests for follow-up on an abnormal smear. But good things will come of following up; either she'll get the treatment she needs, or your minds will be put at ease.
Good luck!
posted by mskyle at 1:03 PM on March 11, 2011 [1 favorite]
Empress has it right.
My experience, in hopes that adding to the chorus will help you guys feel better --
I've had a couple of abnormal pap smears. The typical next step is to do a colposcopy and/or cervical biopsy (in other words, if they see anything relevant in the colposcopy, they will biopsy it right then and there rather than have her come back for a separate visit).
The first time I had an abnormal pap, my doctor didn't see anything worth biopsying in the colposcopy. Yay! This was especially great since it was the first time that I'd had any bad health news in this way, so I got all that OMG IT HAS TO BE CANCER I AM GOING TO DIE stuff out of my system and yet there were no really scary health outcomes.
A couple years later I had another abnormal pap. This time there were cells to biopsy. A cervical biopsy hurts, and there is usually some spotting for a day or so afterwards. They will give her a tremendous phone book of a pad to wear. Thankfully, however, my biopsy came back negative - the cells were not cancerous.
There is a very good chance that these abnormal results are ultimately meaningless for your wife, and that even if there is anything for you guys to be concerned about, it wouldn't be for years and years down the road. At this point, the name of the game is following her doctor's advice and generally keeping up with her reproductive health so that anything that eventually becomes cancerous* can be caught very early on.
*From what I understand from my doctor, too, abnormal cells do not always equal cancer. This is important to realize to avoid going down some slippery mental slope where one abnormal pap means that eventually you're going to end up with cervical cancer. It doesn't really work that way.
posted by Sara C. at 1:58 PM on March 11, 2011
My experience, in hopes that adding to the chorus will help you guys feel better --
I've had a couple of abnormal pap smears. The typical next step is to do a colposcopy and/or cervical biopsy (in other words, if they see anything relevant in the colposcopy, they will biopsy it right then and there rather than have her come back for a separate visit).
The first time I had an abnormal pap, my doctor didn't see anything worth biopsying in the colposcopy. Yay! This was especially great since it was the first time that I'd had any bad health news in this way, so I got all that OMG IT HAS TO BE CANCER I AM GOING TO DIE stuff out of my system and yet there were no really scary health outcomes.
A couple years later I had another abnormal pap. This time there were cells to biopsy. A cervical biopsy hurts, and there is usually some spotting for a day or so afterwards. They will give her a tremendous phone book of a pad to wear. Thankfully, however, my biopsy came back negative - the cells were not cancerous.
There is a very good chance that these abnormal results are ultimately meaningless for your wife, and that even if there is anything for you guys to be concerned about, it wouldn't be for years and years down the road. At this point, the name of the game is following her doctor's advice and generally keeping up with her reproductive health so that anything that eventually becomes cancerous* can be caught very early on.
*From what I understand from my doctor, too, abnormal cells do not always equal cancer. This is important to realize to avoid going down some slippery mental slope where one abnormal pap means that eventually you're going to end up with cervical cancer. It doesn't really work that way.
posted by Sara C. at 1:58 PM on March 11, 2011
I don't think it's possible to overemphasize the importance of the phrase "undetermined significance" yet. What that means is that the exam was inconclusive. This is cause for getting more tests done, but it is not immediate cause for alarm. It could be a sign of something terrible, but it could also be a sign of something completely benign or even just a glitch in the testing process.
Continue to work with your doctor on this and don't freak out until he/she actually has something to tell you.
posted by valkyryn at 4:28 PM on March 11, 2011
Continue to work with your doctor on this and don't freak out until he/she actually has something to tell you.
posted by valkyryn at 4:28 PM on March 11, 2011
As everyone else said, follow up, but don't worry until you're sure there's something to worry about. I've had a number of abnormal pap smears, and though it was squamous rather than glandular, it's not come to anything yet. Don't ignore the fact that it could, of course-- that's why we have these screenings. But odds are that even if something is amiss, you will have caught it soon enough to make it much less life-threatening than it otherwise would have been.
posted by Because at 4:32 AM on March 12, 2011
posted by Because at 4:32 AM on March 12, 2011
This thread is closed to new comments.
posted by December at 9:58 AM on March 11, 2011 [5 favorites]