I recently had a pap smear because I've been having issues with my period (basically severe bleeding, clotting, and a tilted uterus) since I was about 16 (I just turned 24) and have been trying to get answers.
Well, I really walked out of the office without a care because I'm not sexually active and I didn't think there could possibly be a problem..
Yesterday I got the scariest call I could imagine: Something was wrong with the pap. Atypical Glandular Cells, and they said they were referring me to get a colposcopy. They said it could be minor, or it could be really really bad. She even mentioned the "C" word.
The more I read up on AGC the more I freak myself out. I'm really scared.
I have an appt on the 31st to get the colposcopy done... but the waiting is killing me.
Any advice, stories, or anything would be appreciated at this point.
I don't know if this will be comforting or not, but here's my experience. I started getting regular check ups and paps at age 23 and didn't have any problems until I was 32, when I had the same news you just got--atypical glandular cells. I had a colcoscopy and biopsy and everything came back fine. I went for my follow-up paps and everything continued to be fine until this year (I'm now 36) when I had atypical glandular cells again. Again a colcoscopy didn't show anything. I went back for my follow-up pap and I had atypical glandular cells indicative of adenocarcinoma in situ, which is a pre-cancerous condition. I had a conization (which is a yucky mini-surgery, but not the end of the world by any means) and a biopsy showed that I did indeed have AIS but that all the abnormal cells had been removed. Now I'm being monitored (a bunch of gyn tests every 3 months) and I'm looking at a hysterectomy in my near future.
So that's what's happened to me. My doctor has said that because all of this was caught really early, I should be fine as long as I have the hysterectomy.
So I guess the bad news is that you MIGHT be facing something similar. The good news is that most likely you have also caught any problems super early, so any problems can be dealt with easily and effectively.
Hope that helps! Hugs and best wishes to you!!
Just thought I'd let you know I've gone through this too. I had AGUS 10 years ago (I was 28) that led to cone biopsy and AIS diagnosis. Thankfully the biopsy had clear margins. I had normal test results for 10 years after close monitoring and had 2 kids. Now AGUS is back and hysterectomy is recommended. I'm waiting for further results.
Sorry to hear you're going through this. It is scary to read about! If it comes to this for you, the cone biopsy wasn't too bad, and even though a large portion of my cervix was taken out, I was still able to carry 2 kids with a cerclage in place (they stitch your cervix closed - this isn't as bad as it sounds!). I'm trying to remember if I had a colposcopy or not... I think I may have only had an endocervical curettage (ECC) prior to cone biopsy. If I was you I would ask my gyn about this. From what I've read, colposcopy might not be the best tool for assessing AGUS (might miss something), or should at least be backed up with ECC. I've had lots of ECCs, they're not too bad.
I don't know if any of this is helpful, but you're not alone! Hopefully you've caught your AGUS early and it will be easily dealt with. Thinking of you and wishing you speedy treatment.
Last edited by waterstrider; 08-25-2011 at 12:08 AM.
I am wondering how everyone that responed to this post is doing since it has been a couple of months since the original post? I have recently got the same results on my pap and I would like to hear from you.
Is this likely to turn into or be Cancer?
I have had normal pap test up until this year. I am 36 years old and have two daughters. I had my first high risk HPV test show positive last Aug 2010 but the pap was normal. After that visit I my periods stopped for 4 months and the Dr. gave me MedroxyPROGESTERone Acetate. He stated that it would start my periods again and it was just Dysfunctional Uterine Bleeding. So January 2011 my periods started again and were so heavy and painful I would be in bed for a couple days each month with it. I have large clots and most times go thru a tampon an hour. I started having bleeding after sex, just light and spotty. This has been going on for about 6 months. I have noticed a handful of time I was having pain on my right side during sex as well. I went for my annual pap this year in Nov and it took the lab 15 days to come back with my results. So I was a little worried...
When I got the results it stated HIGH RISK HPV and EPITHELIAL CELL ABNORMALITY, ATYPICAL GLANDULAR CELLS.
I read a bunch of stuff online before I had talked with the Dr. office. Which was really helpful but also scary. I ended up only getting to talk to the Medical Assistant over the phone and she was not helpful at all. She told me that they were just cells that shouldn't be there nothing to worry about. So when I told her that I had read otherwise online she then placed me on hold and said she was gonna ask the Doctor. I was ready to pull my hair out, I just want to talk to someone who knows what they are talking about. Ugh!
She came back and told me that they were scheduling me for a Colposcopy Biopsy & Endometrial Biopsy. They can't get me in for a month so my appt. is not till Dec. 12th. I am scared and this long waiting period is killing.
I appreciate anyone's feed back on my situation or to hear about yours.
Sorry to hear what you've been going through! It doesn't sound pleasant. What a drag to have to wait so long for the next set of tests too. I'm not a doctor, so I'm speaking only from my experience (I've had adenocarcinoma in situ (AIS) twice now) but from you pap results, I think the atypical glandular cells is the more worrisome result since it progresses to cancer more quickly. THat said, it took 5 weeks (in Canada) for my pap results to come back atypical glandular cells. My dr called me into his office to tell me the results and in the same visit did an ECC (endocervical curretage). The results from that took 2 weeks and came back atypical glandular cells of endocervical origin. Dr recommended hysterectomy since I'd already had AIS (successfully excised by cold knife cone biopsy) years ago. But he said if I preferred, he could do another cold knife cone biopsy and see if he could get it all out, but his thought was that I'd end up needing a hysterectomy anyways. It was awful making the decision, but I'm now 3 weeks post hysterectomy. I went for my follow up appointment and it turns out I made the right choice since the results of biopsy of the removed tissue was again AIS! So the total time from my pap which initially indicated atypical glandular cells to my hysterectomy which indicated AIS (the last pre-cancerious stage) was 4 months. I'm so glad to have all that behind me. My dr said that the likelihood of it coming back now that my cervix and uterus and fallopean tubes are gone, is very very low.
Sorry for the ramble, but I thought the timing of how it went down for me might be helpful. I know its important for atypical glandular cells to be dealt with promptly. Maybe you could ask your ob/gyn to do an ECC? It can be done in the office any time. From what I've read, it is the best way to detect abnormal glandular cells. Since they reside in the endocervical canal, they're not easily viewed during a colposcopy (I have no experience with endometrial biopsy, maybe it will detect abnormal glandular cells from the endocervix?)
I didn't have any of the symptoms you have had. I had no symptoms at all.
I hope you get everything sorted out quickly, so you don't have to spend much time worrying. If you do end up needing a hyst down the line, know that it wasn't nearly as bad as I was expecting. Really I was functioning almost normally and in no pain about 5 days post surgery (I had a laparoscopic assissted vaginal hysterectomy). So far, so good.
Thank you so much for telling me about what you went thru. The timeline is helpful to know. I am glad to hear that you are making a speedy recovery post hyst. I will let you know how things turn out after the two biopsies that I am scheduled for on Dec. 12th.
I am scheduled for a hysterectomy in a couple of weeks. I just made the decision a few days ago. The whole business began after a routine Pap smear came back abnormal in April '11-- a first for me, and I keep up with them as I should. I am 50, almost 51 years old and have had two children who are now in their early 20s. I am otherwise healthy and at a healthy weight.
I also have had uterine fibroids for probably 7-8 years now but they haven't given me much trouble at all. One however, outside the uterus on a stalk, has grown to 7cm in diameter which is rather impressive. I also have several small ones inside the uterus, whether inside the lining/walls or on the outside of the lining, I don't know. Fibroids are harmless in themselves and much more common than many women realize.
I was hoping menopause would come along b/c that tends to shrink the fibroids and that's what the docs were hoping too (my former gyno didn't get excited about them at all), but then this abnormal glandular cell pap result came in 8 months ago. My new gyno (I moved within the last two years and changed docs) did extra testing. First I had a colposcopy/scraping. It was negative. Then I had an ultrasound to look at the lining of my uterus. It looked thicker than normal, so next she did a hysteroscopy and I guess an endometrial biopsy b/c she thought one of the "fibroids" might be a lesion so that's where she tried to get the biopsy. This, too, was negative.
At this point she said I could have a hysterectomy or I could wait and do another Pap in six months. She said the initial abnormal results could be from a bunch of different causes which is why glandular abnormalities are more worrisome -- they could be an indication of cancer, but also could be from inflammation. I tend to be a "wait and see" person, esp. since I wasn't having any issues other than some bloating/pressure from the larger fibroid or from being perimenopausal. Also I think that I got it into my head that somehow this abnormal reading was caused by my fibroids -- but that was incorrect.
I came back in October, 6 months later, for another Pap smear. The doc said that if this came back abormal, she definitely recommended the hysterectomy. But it came back negative.
Even so, I decided to get a second opinion, and my former gyno agreed to see me again. She put the whole matter into a different light for me by saying that on a Worry scale of 1-10, abnormal glandular cells would be a 9 for her before the extra tests, but a 1 or a 2 now as long as I kept checking. And that fibroids have nothing to do with my pap smear results. That mildly freaked me out!
I decided then and there that 'two wrongs make a right' -- one weird Pap smear + my fibroids = one old, lumpy, grumpy and unpredictable, also unneeded, uterus = get 'er outta there!
So I'm doing it...gulp...but I feel at peace about it since I believe the risk of surgery is less than the risk of doing nothing at this point. Esp. as former doc knows new doc and recommends her highly. I'd appreciate any feedback or advice I can get although it seems most of you on this thread are younger/still in childbearing years so your situation is different from mine. Thanks for listening and hang in there everyone! We are not alone, are we?
Hi jewel, for me the hardest part was trying to make the decision to go for the hysterectomy! But now its all over with, and was really not that bad in the end, I'm really glad I did it. One of the major factors in deciding to go ahead with it was the knowledge that other tests can't really tell the extent of glandular cell abnormalities. Its something they don't know until they've tried to remove it.
I'm 5 weeks post op now after LAVH and recovery has been much easier than I ever would have imagined. I've had almost no pain since coming home from the hospital.
Good luck with your hysterectomy. I hope your recovery is as smooth as mine has been.
Last edited by moderator2; 12-03-2011 at 03:57 PM.
Thank you everyone for sharing your experiences.
I had my biopsies (ECC, Endometrial, & Colposcopy) done on the 12th of December and the doctor called me on Friday the 16th. When she did my biopsies she did tell me that she could see a tumor on my cervix and she held out her fingers to about an inch to show the size. So with that I was kind of prepared to hear that I was going to need maybe something else done, but was not expecting what came with the results. Not good news! She told me that all 5 samples came back with Invasive Adenocarcinoma of the Cervix. She stated that there is a chance that this has spread and I would need further testing.
She was requesting that we come to the office on that Friday after she told me the results over the phone, but I was in no shape to do that. I just needed a little time to collect myself and thoughts before I met with her again. My Husband and I went to meet with my OB/GYN Dr. in person on that following Monday. She told us that she had more concerns than what she told me over the phone. One of the samples was showing Cribriform and Papillary patterns, which means that itís further advanced and we should be worried about this. We asked how many cases like this do they see in their office. Her reply wasÖ she has never seen this advanced of a case in their office. With her eyes as watery as mine she stated that they usually catch this much earlier. She also stated that she had looked back in my records and that the HPV was detected back in 2007. (My prior Doctor neglected to tell me that at that time and told me to come back in 3 years to get my next Pap because they had changed the policy. If you have a normal pap & everything else is normal then you only get Pap every 3 years. They told me it was all normal and so my next Pap wasnít till Aug. 2010.) So with that the Dr. said she was very sorry that it was missed and if I had been under her care at that time she would have had me back in 2008 to do all these biopsies.
My Husband and I left that appointment scared out of our minds. Now thereís a good change that this could have been going on for 5 YEARS!!!! WTH!!!!
Everything we read and all the paper work that the Dr. gave to us states that they donít have a treatment for Adenocarcinoma; it is treated as though itís Squamous Cell Carcinoma.
She referred me to a GYN/Oncologist at the Women's Cancer Center. My appointment with them is January 3rd. Waiting sucks! They have told me that I will be getting a Chest X-ray, Blood work, CT scan, and PET scan. This will help decide the course of treatment. I will have to get a radical hysterectomy to remove everything, lymph node removal, and some surrounding tissue. I will also have to have Chemo & Radiation treatments as well. Itís going to be a long hard road but Iím ready to fight.
The following user gives a hug of support to breezybaby: waterstrider (01-01-2012)