Support needed. Atypical Glandular Cells diagnosis. (Possible TMI for girly stuff.)

After finally being brave enough to go to an OB-GYN for the first time in 51 years (I know, I know, I suck and it’s my fault… significant shame issues kept me away), I left feeling pretty good because I’d conquered a terror I’d had for years.

Well apparently I was right to have been scared. The pap test was returned w/“Atypical Glandular Cells of Unknown Significance.” My gyn. has me scheduled for a colposcopy and a biopsy for the 19th, as well as an ultrasound.

At first a bunch of other women told me “Oh it’s very common to have atypical pap smears, don’t worry,” but after reading every single frickin’ link on the first six pages of Google results it’s patently clear that my situation is rare and quite different from the ‘usual’ finding of Atypical Squamous Cells.

I know I don’t have STDs or HPV. Given my age and being overweight, the bigger concern (vs. cervical cancer) seems to be endometrial cancer. I have no symptoms–not that it matters, this stuff is often symptomless. I’ve always had irregular periods that ranged from nothing to pretty heavy (though the heavy portions only lasted for a half-day at the peak of my period).

Now I’m pretty firmly in perimenopause zooming fast in on menopause–I haven’t had a period since September. Although maybe that’s just a big tumor blocking my uterus, I dunno.

I’m now terrified and certain I’m doomed. The research seems to be all over the place and I can’t fully understand the findings related to what my odds are. The odds of malignancy are supposedly much higher with AGC. I’m seeing crazy ranges, though; the malignancy rates given range from 5.2% to 48%. How the hell can it vary so widely?! Come on, docs, get it together!

Because of the rarity of this finding (it’s like 3 out of 1000 tests) the sample sizes of these research findings have been very small, like, 55 people. One researcher used 3000 AGC+ subjects.

I’m not an expert on reading medical research papers but I can certainly understand things are bad when a paper says that a finding of AGC is “ominous.”

Does anyone understand AGC and can decipher just how petrified I can be? I already feel like I have a death sentence and can hardly get out of bed. Worse, I hate myself for waiting so long to get to a gynecologist. Serves me right for being an irresponsible coward.

Can’t contribute any knowledge–just support and sympathy. Hang in there.

I don’t know about AGC, but I know what it’s like to have a very rare cancer and not be able to find information. It’s pretty isolating. I did find a group on Facebook and that’s where I found the best information.

I’m sorry you have to deal with this! Please keep us updated unless you’re not comfortable doing so, for whatever reason. Hugs.

As a cytopathologist familiar with this diagnosis:

AGUS (Atypical glandular cells of undetermined significance) is a less common diagnosis than ASCUS (atypical squamous cells of undetermined significance), but in my experience is not highly correlated with malignancy (as noted, there’s a wide range in the literature for frequency of significant lesions detected on followup).

There are lots of benign conditions that can result in an AGUS diagnosis, including inflammatory changes, sampling high in the endocervical canal, tubal metaplasia (again, benign variant) etc.

My impression is that while clinicians take AGUS diagnoses more seriously than ASCUS and are quicker to go to colposcopy and biopsy per recommended guidelines, I would not regard a single Pap diagnosis of AGUS to be necessarily “ominous” unless other clinical findings supported that impression.

If I had a relative who was worried about this diagnosis, the first thing I’d suggest is getting the Pap reviewed, at the least by another pathologist in the department where the specimen was sent, and maybe by an outside cytopathologist with a good reputation in the field depending on circumstances.

In any event, best wishes to the OP and I hope this turns out to be a false alarm.

The breadth and depth of expertise on this board never ceases to amaze me.

To choie–suggest you suspend googling for now. You don’t have enough info to keep yourself from going nuts. Hang in there and keep us posted. {{{Hugs}}}

Stay off Dr. Google until you know more, and maybe not even then. The stories will only frighten you.

You won’t have to ask me how I know this, because I’m going to tell you.

http://boards.straightdope.com/sdmb/showthread.php?t=836996

Thanks so much, Emiliana and Helena330. I really appreciate your kind thoughts.

Jackmannii, you have no idea how much your info helped give me more insight and hope. I literally started to cry after reading it–that’s how on-edge, emotional and defeatist I’ve been.

(It hasn’t helped that when I’ve read other patients’ experiences with AGC/AGUS, it’s almost always been on cancer support or hysterectomy support communities. That tends to skew the info in one direction.)

I know you’re not my cytopathologist (if one can say that one ever has “their” cytopathologist!) but just hearing from someone who knows WTF he’s talking about, and using plain but knowledgeable English to add an experienced perspective… well, it’s given me room to breathe again. It will help me get through the next few weeks. And I’ll follow your advice & see if I can get any recs on a second reading.

Thank you very very much for responding. You may think I’m nuts but I’m going to print out your answer and put it where I can read it when I get too fearful.

(Potential bad diagnosis coupled with already existing panic disorder do not make a good mix.)

Ooh… ThelmaLou and nearwildheaven sneaked in while I was composing my last post!

I remember that thread very well, nearwildheaven… that was my previous stop on the “oh my God I definitely have a fatal illness” tour. And you’re both right. Honestly, I can’t imagine there are any AGUS pages left that I haven’t read!

Take it easy on yourself, and a good way to do that is to stop playing internet doctor. You will drive yourself crazy and scare yourself to death. My husband and I were just talking about that very thing this morning. I wish you the best and I’m sending you hugs!

Good luck, girl! Don’t panic, yet. Get thru the scans and biopsy. Hope it all goes well!

Belated thanks to Patx2 and Beckdawrek for your good wishes. And happy new year, everyone.

I was asked for an update, so here goes!

I got through the ultrasounds (abdominal & transvaginal, oy) a couple of weeks ago, and the good news is that the ovaries & cervix were normal, with no lesions or fibroids or anything remarkable.

The (possibly) bad news is that my endometrial lining is thicker than it should be, at 18mm, with “mildly heterogeneous echotexture” and no increased vascularity.

So this could be hyperplasia or, of course, cancer. Or it could be normal for someone who is apparently still perimenopausal, not in menopause. Spoiler for TMI–although let’s face it, this whole thread is already in TMI territory, isn’t it?

[spoiler](I hadn’t had my period in 5 months, so I thought that I’d crossed the line from perimenopause to menopause–I know the “official” rule is twelve months w/o a period, but I thought I’d already started that countdown–but yesterday… surprise!

Maybe the long delay is why the lining was thick? I dunno. I’m a little worried that the bleeding is a bad thing–abnormal uterine bleeding is a symptom of cancer.)[/spoiler]

So the next step is the colposcopy, ECC (endocervical curettage) and endometrial biopsy, which is scheduled for next Monday (Jan 8). I’m scared both for the results and for the pain, which for a lot of people seems to be pretty frickin’ bad, especially as they don’t use even local anesthesia.

My Gyn gave me the option of having sedation (twilight, like during a colonoscopy), but this would make this a surgical procedure rather than going through their regular “colposcopy clinic,” and would mean a longer wait. Since I’m uncomfortable with the idea of being knocked out, and don’t like the lack of control, and I don’t want to wait any longer, I’m choosing the more painful option. Yay. All I can do is take a couple of Tylenols beforehand, which seems to be the universal recommendation.

Of course if my period continues I may have to postpone the colposcopy anyway!

Anyway. That’s the update. I was happy right after the ultrasound, because honestly I was more afraid that they’d find something in my ovaries, but as time goes by, my anxiety has increased over the thickened endometrium. :frowning:

But I’ll continue to wait and hope for the next few weeks. Thanks again for the support, everyone!

I’ve had endometrial biopsies. It’s more of a pinch and you may feel a bit achy afterward.

Look at you, facing your fears! Way to go!

I’ve had an endometrial biopsy, too. No biggie. On a scale of 1 to 10, maybe a 4-6, but the biopsy part lasts for about 30 seconds. The longest and most painful part is lying there in that backless, paper dress waiting for the doctor to arrive. THAT can go on for quite some time.

:slight_smile: Thank you, ivylass! I think it’s supposed to be the ECC, where they stick a pipette into your upper cervix and scrape it around, that’s the more painful of the two. As it’s described, some women don’t mind the pain, others find it “moderate to severe.” :eek: Not super confidence-boosting, that! Since I had intense pain just with the pap smear (mostly from the speculum), I’m a wee bit pessimistic. Which of course will only make me tense up, and the process will be worse. Yay!

Did I mention that Xanax and/or Ativan will be on the menu in addition to the Tylenol? Because they totally will. :smiley:

Oops! Simulpost! See my response above.

My docs apparently hold an “endoscopy clinic” every two weeks, and supposedly it’s nothing but peeking into ladies’ business all day like a production line. (That’s how my gyno described it, humorously.) So I’m thinking there won’t be too much waiting half-naked. I hope.

Thank you very much for your support, ThelmaLou and ivylass.

Good luck. Geez! ask for a sure-enough pain pill.

Definitely stop reading all the horror stories online. It will only make you worry more.

I also had a “bad” pap smear, and had to have the dreaded colposcopy just last month. I tried not to dwell on the cancer possibility, until we knew for sure what was going on. I’ve had abnormal cells before, and had a colposcopy years ago, so maybe that helped my outlook this time. My gyno says that yes, finding abnormal cells does happen, and most of those cells turn out to be nothing. The colposcopy is just to make sure the cells are harmless.

Yes, it was painful, but not unbearable. I’d equate the pain factor as similar to a pap smear, but it took longer, so I got to experience the discomfort longer. My doctor told me I was allowed to curse during the procedure (he knows I grew up in New Jersey), and even gave me a local anesthetic, which definitely helped.

Thankfully, the biopsy showed no signs of cancer.

Sending hugs your way…and please keep us posted on how it goes.

This needs to be said more - you don’t suck, choie. Good on you for conquering your fear of gynos.

Put me down in the column for having had an abnormal pap and it turning out to be nothing. I suspect most women do, at some point. There’s just so much possible variation involved, and they don’t have a baseline for your personal brand of “normal”.

Chin up!

If this procedure has the potential to be painful, shouldn’t a local anesthetic be automatically given? I’m asking because I know nothing about these procedures. I want to be informed in case I ever have to go in for one.

Thank you to all so far! I’m so lucky and grateful to have you guys to back me up and offer commiserations. And congrats Deanna D for having had a successful experience.

teela brown – So far I’ve read about 50/50 on the local. Some docs use a numbing spray or a needle, and others don’t do anything. My doc said that usually the local injection is just as painful as the biopsy, so it’s kind of a six-of-one, half-dozen-for-the-other scenario.

Well, I have an unexpected update. Just got a call from my clinic saying that the chief resident had cancelled the procedure, and was recommending just a regular gyno appointment in the next couple of weeks.

I am a bit… I dunno, concerned. I asked why the change, and the admin I was speaking to just said the doctor said I didn’t need it anymore. I guess after the sonogram, they didn’t see anything worrying except the thickened endo lining? That goes against what my own gyno said post-sonogram, ditto the radiologist; they weren’t concerned but did want the colposcopy etc. to check on the uterus.

I’ve asked for my gyno to call me back, so maybe I’ll get more advice from her. But I just feel uncertain leaving things on a wait-and-see basis. Especially given my risk factors for endometrial cancer (age and overweightness). Should I see if I can get the procedure anyway?

On the one hand I suppose I should consider it a good thing that he doesn’t think I need the colposcopy et al., but I also feel uneasy that maybe they’re not checking things out as thoroughly as they should.