Adenocarcinoma in situ (Cervical)

Hi MgReg,

My AIS diagnosis was a complete surprise also!! I had one abnormal pap smear in July 2007, followed by repeat Pap which came out normal but had a biopsy and HPV (human papilloma virus) test in October because I had abnormal vaginal bleeding. The HPV test came out positive for high risk strain and the biopsy revealed AIS. So I consider myself lucky to catch it in time.

When I found out, I was in shock. I'm 40, a single mom (divorced for 2 yrs) with two young children (6 and 4). My first reaction was to get it all out!!! All I could think of my two kids and wanted to be there for them. Given my situation, still single and my age, the decision was not a difficult one, but I can see how difficult it must be for younger women who don't have children or want more.

I had the hysterectomy on January 31st and am now feeling great (started jogging again yesterday). The pathology report revealed CIN2/3 lesions an AIS but nothing had evolved past that point.

I've read quite a bit about HPV and I think HPV testing will be done more routinely in the future to identify women who are at risk. Pap smears don't seem to be that effective at detecting AIS (in my case anyway!!). There is also a vaccine to protect against HPV on the market in Canada (not sure in the US) and another on the way. Hopefully cervical cancer will become a rare disease in the future...

Good luck.

I would absolutely agree that paps are not all that effective in detecting adenocarcinoma, since it generally occurs so high in the cervical canal and that area is generally not sampled during a pap. From what I have been reading it seems as though it is often missed during colposcopy's also. To me this is a very scary form of cancer mainly because it can be so difficult to detect, it seems that most of the time when detected it is by chance or luck. I was very lucky mine was detected early. I think when you test positive for high risk HPV Dr.'s should be more diligent in taking the extra steps and doing some of the not so routine tests and biopsies. I would think most women would rather do a couple extra biopsies, than find out of the blue they have an advanced stage of this cancer.

Hi,
You are correct I had to have a cold cone for my final diagnosis even after the pap and the colposcopy. The cold cone biopsy is what gave me the diagnosis of cancer. good luck all

Maybe I'm way late in the game on responding as I look at the date of the original post but: I had a series of "atypical" results on paps for years, then a regular one 16 months ago, then 4 months ago my gynocologist calls and says there was some severe dysplasia...long story short, after biopsy it showed Adenocarcinoma Invasive...either it wasn't caught in previous ones or this moves quickly. I saw a wonderful gynocologist oncolologist and within one week had had a radical hysterectomy. I didn't need radiation or chemo, as the cancer was contained to the cervix. He said he would absolutely not do a cone or anything but the hysterectomy as adenocarcinoma skips lesions (which my understanding is: it can develop in more than one location in your cervix at once) so the cone, etc. wouldn't be giving me good odds (96% odds with hysterectomy). I'm 29, single and no children. It was hard, but when you're faced with the decision of being around or not based on the chance you may have a family down the road, I don't doubt what I did.

Of course, now I have what they refer to as "cancerhead" which is basically me having severe anxiety over it recurring....

Hi,
The didn't do my cone for treatment it was for correct typing and staging they did a cold cone along with an endometrial biopsy to see it there was anything going on in the uterus, the cold cone came back with the cancer and I was staged at invasive cervical cancer stage 1A2 when I had my colposcopy I was given the result of adenocarcinoma in situ it wasn't until the cold cone that I was told I indeed had cancer and I already knew that it would mean a TAH/BSO. My doctor told me that depending on what the results of the cold cone were then this or that would be done and he drew me a scale with 1-5 results and 5 being the worse so I landed between a hight 3 and 4 after the cold cone so I knew from the scale as what would be my method of treatment per where I landed. I could have kept the ovaries but I am 43 and my doctor told me that menopause starts between 35-55 with the average age of 51, I had read so many post where the women did not have the ovaries taken and are now back on with problems or concerns related to the ovaries plus I had read that ovarian cancer is very hard to detect without a cervix. I am confident in all my decisions too hey we all get the cancerhead!! I am going for my first 3 month on the 17th of this month and I am getting nervous. We all have to make so many choices and I am sure that each and every one of us has it hard and it is a difficult time for all of us. This is a great place for comfort and answers. Good luck