I am a 26 year old who has just been diagnosed with atypical glandular cells. I am scheduled for colposcopy, ultrasound and endometrial biopsy over the next few weeks and I am scared to death. My Dr. seems to believe that because of my age everything will be fine but everything I read online says I have a very high chance of having invasive cancer. Does anyone have a similar experience that turned out okay?? My husband and I were planning on trying for a baby soon and now I feel like everything has been turned upside down.
I am sorry to hear about this result, FLgrl12. I am glad to know that your doctor is doing a biopsy very soon. When he/she does the colpo, please ask for an ECC. It is the only non-surgical way the doctor can determine what is going on in the cervical canal. I would expect the doctor to do that, but ask for it by name.
Also, take a written list of questions to your appointment. Leave some room for writing answers. This will help you get the most important questions answered.
Having atypical glandular cells doesn't mean you have invasive cancer. All it means (depending on what the pathology report actually said) is that you have some atypica cells in your cervical canal (and/or uterus, I think). The doctor needs to take a closer look. That's why you are getting the colpo (plus hopefully an ECC) and the endometrial biopsy. Doctors investigate and treat atypical glandular results more agressively than they do atypical squamous cells. There are many reasons for that. The two main reasons are that squamous cells are easily seen, sampled, and biopsied. Glandular cells can only be sampled by an ECC (or LEEP or Cold Knife Cone - both of those are surgery, though). The second main reason is that glandular cell lesions can grow quite irratically. There could be a lesion here, then over there, then way over there. Atypical squamous cells tend to grow outward.
Even if the glandular cells are coming from something like adenocarcinoma in situ, there are some procedures/surgeries that you could have done that could spare your fertility (given your body, your doctor, etc).
I know a few others with AIS and/or AdCA will join in and give you some words of information and hope.
I'm sorry you had to find us, under these circumstances. I am confident that you will get a wealth of information and much more understanding and compassion than you could ever expect!
Pickle has already given you great advice, so I don't have much to add. I had invasive adenocarcinoma (cancer of the glandular tissue), but luckily mine was caught early enough that I was eligible for fertility saving treatment instead of a hysterectomy. I had what is called a trachelectomy, which is a cervix removal only (although they actually leave about 5-10mm of cervix). The doctor also placed a permanent cerclage so I can sustain a pregnancy. There is increased risk of preterm birth and second trimester loss (about 25%), but my doctors are confident that I should be okay if and when I get pregnant. Careful monitoring and probably bedrest would be the course of action, but at least I still have a good chance of successful pregnancy(s).
However, you are a long way from that! Do make sure to get the ECC as well. The chances of having invasive cancer are very small, but the key is to catch it early. As bad as I felt my situation was, my treatment was very manageable and I am recovering well -- and best of all, I can still have children. I did not need anything other than the surgery -- no radiation, no chemo -- so while having cancer is something you never want to go through, there are some great options out there for treatment.
Please check back with us and let us know how you are doing!!!
Thanks so much for the posts. I feel better just knowing I am not in this boat alone. My colpo is scheduled for Monday and I will make sure to ask for an ECC. I will be sure to let everyone know how things progress.
I'm 26 and was diagnosed with adenocarcinoma in situ! While this whole this SUCKS, Ithe chance of you having invasive cancer is low. After I was diagnosed with AIS, I had a cold knife cone to remove it. My doctor told me the chance of discovering invasive cancer was not high at all! It's only 2%!! I confirmed this by looking it up on the website for the American College of Obstetrics and Gynecology! Actually, they say it's 1.99%. (And you don't even know if you have AIS. You could have less-advance glandular abnormalities.)
Also the average age of diagnosis of AIS I think is 38, and invasive adenocarcinoma is like 50. Taking your age into account, I think your doctor is right not to be worried. Don't get me wrong , you still should get ALL the tests to make sure. But chances are you will totally be FINE.
AIS is totally managable. It requires minor surgery and a TON of follow up, but it's not so bad. But you don't even know if your have that! You need the ECC to tell you for sure.
Are you sure your doctor is doing an endometrial biopsy? Not that I think that's a bad idea, but usually I think they don't do that unless you're a bit older. Just your age and diagnosis makes me think that your doctor might have meant endocervical biopsy (which is an ECC). Anyway, I bet your doctor is planning an ECC, but you should definitely double check.
What do you mean by a ton of follow up? I had that at age 41 (along with the other at the same time). I had a hysterectomy, but now I wonder if I should be seeing a gyn. oncologist. I only have paps every year, although this type isn't discovered by a pap. How did they find yours?
A ton of follow up is an alternative to having a hysterectomy. Since FLgrl12 said she was trying for a baby, I just assumed that's the route she'd go. As a gynecologic oncologist explained to me, hysterecomy is usually recommend for women done with childbearing because it the easiest way to treat AIS. The chance of AIS coming back after a hyst is extremely low. If you don't have a hyst, they are always concerned that it might return (though the the actual rate of recurrence is unknown).
What he basically said is that if your done with having kids, hyst is the way to go. You have surgery and then that's pretty much it. But if you are not done with kids, having a cone biopsy and a ton of follow up is a safe way to go as well. I have to go in every 3 months for a colposcopy and ECC for at least the next 2 years. (Well, until I'm done with my uterus.)
Last edited by Mod-S4; 05-28-2009 at 08:27 PM.
Reason: Off topic portion removed (please try to stay on topic to the original poster). Thanks.
Many doctors will do an endometrial biopsy when there are atypical glandular cells (or AIS or AdCA). The cells that are in the uterus are also glandular as well as the ones in the cervical canal. It is a prudent action for the doctor to test the uterus as well as the canal. My doctor did an endometrial biopsy when I had my CKC.
I think when/if you get a diagnosis of carcinoma in situ or adenocarcinoma in situ (CIS or AIS), then it is extremely important to get to a gyn/onc. In my experience, gyn/oncs only take patients with CIN III (severe dysplasia) or higher. Regular gyns do not have a lot of experience with atypical glandular cells. I strongly encourage you look into where there are some located so that if you need one, then you know who to call.
LilyL21-Thanks for your response-That makes me feel a lot better..I have to be honest when the Dr. started talking about all of the different test I was having my mind started to shut down so I could have the endometrial biopsy mixed up with an ECC or I could be getting both. I am going to get that part all straightened out on Monday when I go for the colpo. Everything you read online is so scary. Even though my doc told me I can't really go by those statistics because of my age, my mind can't help but go to worst case scenario. I guess I am just confused that my Dr. is literally telling me that he thinks it's going to be nothing but I don't see any literature anywhere that says I can have atypical glandular cells for no reason. I guess I will find out soon enough.
...although this type isn't discovered by a pap. How did they find yours?
My problem was discovered by a pap, which prompted a colpo that diagnosed *at least* AIS, so I had a CKC that diagnosed me as early invasive adenocarcinoma....so this can definitely be discovered by a pap in the sense that that's what gives the first indication that something is wrong.
I just got my results from all the biopsies taken after my pap showed atypical glandular cells - and all 3 biopsies were benign thank goodness. I had ascus first and a colpo and leep done in Jan 08, the agus came back on my 4th pap after that leep. I had another colpo before my 2nd leep about two weeks ago. I did go see a gyn/oncologist after the pap of agus and he is the dr who performed the biopsies which were endometrium, ectocervix, and cone biopsy. I am very glad that I went to the onc/gyn as he had alot more experience with this than my regular ob/gyn who said my pap was normal and not scheduled me for any follow up with her.
Good luck to you on your results once performed. I wish you all the best.
I am back from my colposcopy and ECC. So far so good the Dr. did not see anything that looked bad and actually found me to have a cervical eversion which means my glandular cells extend out onto my cervix. He said this could be the reason for the atypical cells being picked up on a pap as they are exposed to an acidic environment which they are not accustomed to. He took 4 biopsies ( all of which he said appeared as normal tissue, but better safe than sorry) and the ECC which are being sent off to pathology and I still have an ultrasound and a endometrial biopsy scheduled so I am not out of the woods yet but feeling a little better.