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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

Hey all! I'm freaking out here and was wondering if anyone out there may have a similar experience or some advice, or even helpful kind words to make me feel better! Let me preface this story with the fact that I have a long history of HPV and had a LEEP procedure two and a half years ago and have had multiple normal paps since, going in every three months, then 6 after that.

About a month ago I started experiences painful pelvic cramping, abnormal bleeding, and intense low back pain. This started acutely. I basically woke up one morning feeling like crap and took myself to the ER. They ran a bunch of tests and I came up negative for everything-infection, tumors, etc. They did a pap and the results came back ASCUS so I was sent for a colpo (my third) and an ECC. These results also came back clean, which is reassuring. Now let me tell you the craziest part. My current doctor received my old records regarding my LEEP procedure, etc. Apparently, according to my records, I had adenocarcinoma in situ!!! And the doctors never told me!! Is this insane or what? My current doctor said this is absolutely unacceptable and they should have told me, obviously.

He says that my records show that they handled it properly (besides the whole not telling me part!!!) and the LEEP showed clear margins and they followed up with paps every three months. I am just reeling with this news that I had cervical cancer two years ago and never even knew it. I'm wondering if the doc just thought it wasn't that bad so she didn't need to tell me? But what about my follow up? Shouldn't I have seen an oncologist? If I had know at the time I would have insisted!! recurrence? I mean, these are things I needed to be aware of! Perhaps then when I started having discharge about two months ago I would have taken it much more seriously knowing about my past. All I was told two years ago was that I had abnormal cells and the removed them all.

So, my current doc does not seem to be too concerned that these current symptoms are related to that AIS due to my clean biopsies, but I am obviously still freaking out. All the tests we have done have come back negative but something is definitely wrong with my cervix! I mean, there are horror stories of women who have had this and it wasn't detected on biopsies because the samples were too small, etc. He's bringing me in for a laparoscopic procedure to look at my uterus in a couple weeks so that will make me feel better.

Anyone have any suggestions on other tests I should insist upon? Should I ask him to redo the biopsy to make sure we got a good sampling of the cervix and the canal? CT Scan? Chest xray? I mean, what if these cells have been multiplying somewhere for the last two years and are just now making their way down the cervical canal? I am so scared and really really angry that I wasn't made aware of this before. Is this common practice for doctors to remove what they believe to be AIS and not tell the patient? That just seems crazy to me.

Thanks folks for your help!!

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