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    Old 07-09-2010, 09:41 PM   #1
    Queencolleen
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    Had AIS two years ago and was never told!!

    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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    Old 07-10-2010, 07:48 AM   #2
    kosm
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    Re: Had AIS two years ago and was never told!!

    That is crazy. I just wrote a post yesterday that is somewhat related. It seems that with every test I get, they call me with the results, I order the path report and realize that what they told me over the phone and what was in the path report NEVER match up. It is now my policy to ALWAYS order the pathology report ASAP. I don't know why they didn't tell you. They may have thought you wouldn't know what AIS was and they removed it so why upset you, although that is no excuse. Anyways, it is good that they are doing the surgery. If I were you, I would ask for a Cone Biopsy. From what I have read, it is very very accurate (although invasive) and if you have cervical cancer the Cone will NOT miss it. I would say that this is the most important test you need done. Ask them for a Cold Knife Cone, not a LEEP. If you are still concerned, get a CT Scan or an MRI. If you have a tumor, it will show it. But get the Cone, for sure. I am so sorry to hear you are going through this!! Let us know what happens!

     
    Old 07-10-2010, 10:28 AM   #3
    Pickle Eyes
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    Re: Had AIS two years ago and was never told!!

    Adenocarcinoma in situ is not cancer. It is the highest level of precancer, but it is not cancer because it is not invasive beyond the cell wall.

    You still should have been told.

    If your doctor knew anything about glandular cell abnormalities (AIS), then he would have known that having clear margins for a lesion isn't a guarantee that there aren't other lesions elsewhere. Did he/she do another LEEP?

    Glandular cell abnormalities are not usually identified by a pap. The pap only samples some tissue from the outer cervix (squamous cells). The ECC is the only non-surgical way to sample the canal where the glandular cells are. The LEEP and/or CKC (cold knife cone - preferred procedure for AIS) are the surgical ways to biopsy the glandular canals to get a better idea of the glandular involvement.

    Have you had repeated colposcopies and ECCs after the AIS diagnosis? Did you have a second LEEP after you had the AIS diagnosis? If so, it is possible that the dysplasia was removed and you are fine.

    Have you had a uterine biopsy?

    You didn't say how old you are. A women younger than 30 is more likely to be able to recover/heal from HPV related dysplasia better than a woman over 30.

    Are you wanting to preserve your fertility?

    As far as other tests, right now, they need to be checking on the cervical canal with ECCs and/or CKCs (cold knife cones, not LEEP).

    I had a CT of my pelvis a few months before diagnosis with Adenocarcinoma Ia1* and did not show up on the scan. The lesion was too small. If it shows up on a CD or MRI, then then I'd assume it is quite invasive.

    Yes, you should have been sent to a gyn/onc with the AIS results.

    I hope this gives you a little more info.

    * I was diagnosed with Adenocarcinoma Ia1 2 years ago by way of a CKC. The gyn/onc did a total hyst (cervix and uterus only) and I didn't need chemo or radiation since the cancer was found so early. I was released from the gyn/onc at my 1 year anniversary. I am now 2 years cancer free. My reasons for saying this is because if adenocarcinoma is found early enough, treatment is relatively conservative (in my opinion - compared with many other cancers) and there are other options (repeated CKCs, a trachelectomy, etc).

     
    Old 07-10-2010, 11:21 AM   #4
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    Re: Had AIS two years ago and was never told!!

    Thanks so much for your posts! I'm still reeling and I don't understand why the doc two years ago wouldn't have sent me in for more follow up and my symptoms now are really starting to scare me. The doctor keeps reassuring me that all the tests are good, but that leaves me thinking that it must be something really bad then because all the minor things have been ruled out!

    I've had mixed reports on whether AIS is cancer or not. Seems some doctors believe it is the highest form of precancer and others see it as the lowest form of cancer...Apparently the old doc is of the former and this new doc is of the latter because he said if he was my doc two years ago he would have recommended a hysterectomy! And I asked him point blank and he said "yes, you had cervical cancer" which was freaky!! To make myself feel better though I'm going to go with precancer... And, although I am only 28, I don't really have a strong urge to birth children of my own and could probably have been convinced to do the hysterectomy, especially now looking back on it with all I've been dealing with in the last couple months I just want it all out!!

    As far as procedures I've only had the one LEEP two years ago, and just recently a follow up colpo and my first ECC because of my symptoms which all came back clean, but I'm worried that the biopsy didn't get all the cells especially because, as you said, the glandular carcinoma doesn't always show up on these things! Would an ECC miss some cells too, if it didn't sample the entire canal? So, you think I should insist on the cone biopsy even though my other results are clean? And no, I haven't had a uterine biopsy yet but he is getting me in for a laparoscopic procedure on the uterus so I will ask if he can do it then. Would it be a good idea for me to ask to be referred to a gyn/onc at this point to follow up on the stuff from two years ago? It really feels like they dropped the ball with follow up and if it turns out this is related I am going to get medieval on them. ;-)

    Thank you so much for all your information!! I'm keeping my fingers crossed that if this is a recurrence of the AIS that we have caught it early enough.

     
    Old 07-10-2010, 01:30 PM   #5
    Pickle Eyes
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    Re: Had AIS two years ago and was never told!!

    If this doctors believes you had cancer, then why hasn't he referred you to a gyn/onc?!

    Considering your age, and your test results (the LEEP which identified the AIS, a colpo and a clean ECC), they it might be safe to say that the original doc got all of the lesions.

    An ECC isn't perfect, just as a pap isn't, but I'd say an ECC is more likely to be accurate than a pap. The reason for a uterine biopsy (and maybe a D&C) is to identify if there is any glandular involvement of the uterus. If all of those (ECC, uterine biopsy and/or D&C) come back fine, then I wouldn't worry too much. Your age really plays an important part of this.

    I don't know whether you need another cone biopsy (preferably CKC, but a LEEP might be fine). I would think it would depend on the results of some sort of uterine biopsy/sample.

    If it were me, I'd go to a gyn/onc. He/she would be the best one to determine if you needed their services.

    My gyn was quite concerned with my AIS diagnosis (my GP was even more freaked out). The gyn/onc said she saw several cases of it every day and that it isn't as rare as some people believe. She also told me that if caught early, it is very treatable (though it may not preserve your fertility).

    IF, God forbid, you still have AIS (without uterine involvement), there are a few options that could preserve your fertility: repeated CKC or trachelectomy; as I mentioned earlier.

    I hope that helps.

     
    Old 07-21-2010, 10:35 PM   #6
    Queencolleen
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    Re: Had AIS two years ago and was never told!!

    Pickle eyes you are a wealth of information did you learn all this stuff doing research on your own?
    After reading your recent post about CKCs and LEEPs I'm starting to wonder if what I had was actually a CKC...
    I was told it was a LEEP but I also wasn't told all the facts obviously so I don't trust those doctors anymore.
    I was put under general anesthesia I had glandular involvement and the results showed clean margins... Is it possible for a
    LEEP to show clean margins if the lesion was small enough? I'm still waiting for all my old records to get here in the mail...
    I'm kicking myself now for not doing my research then. Grrr

     
    Old 07-22-2010, 02:11 PM   #7
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    Re: Had AIS two years ago and was never told!!

    Queen:
    I just read this thread and WOW I cannot believe they didn't tell you. If I were you, I'd make an appointment with the same doctor and ask him to explain himself. And definitely file a complaint with the state medical board. That is scary to me!! Not only is it your right to know, but as PickleEyes has explained, the recommended treatment and follow up are much different! Nothing makes us lose our faith in doctors more than them lying. I had one lie to me, and it was over a very small deal compared to this, and I was so angry even now I can't even stand to think of that woman! Grrr!

    As for LEEP, it's completely possible that they did a LEEP and got "clear margins" and if follow up tests aren't showing anything now, you probably don't strictly need more treatment. The ECC and the pap aren't perfect, but having repeated ECCs and paps is a very good way to detect something going on. I also highly suggest you ask for HPV testing. If you have a negative HPV test, the chances of AIS returning is very, very low. If it's positive then of course you have some deciding to do.

    About the cancer issue, I kinda don't like it when people say AIS (and even CIS) are "not cancer." Neither is aren't invasive, but that doesn't mean it's not cancer. Doctors generally call them precancer when they happen on the cervix, and that is really starting to bug me. If can have an in situ breast cancer or colon cancer, your doctor tell you that you have cancer and refers you to an oncologist. If you have the same thing but on your cervix, the doctor tell you that it is "precancer" and treat it in her office. The situation is just weird to me.

     
    Old 07-24-2010, 10:03 PM   #8
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    Re: Had AIS two years ago and was never told!!

    Queen, I knew nothing about HPV 2.5 years ago. I've learned so much since being diagnosed with high risk HPV and eventually cervical cancer (adenocarcinoma Ia1). So, yes, I have done many hours of research and asked MANY questions. I have to say that I stuck with reading most of my information from reliable sources (CDC, various cancer organizations, etc) and avoided most discussion boards (obviously I like this one) and sites that sell things, especially if they sell supplements that are to help "heal" dysplasia or cancer.

     
    Old 09-04-2010, 04:11 PM   #9
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    Re: Had AIS two years ago and was never told!!

    Quote:
    Originally Posted by Pickle Eyes View Post
    Adenocarcinoma in situ is not cancer. It is the highest level of precancer, but it is not cancer because it is not invasive beyond the cell wall.

    You still should have been told.

    If your doctor knew anything about glandular cell abnormalities (AIS), then he would have known that having clear margins for a lesion isn't a guarantee that there aren't other lesions elsewhere. Did he/she do another LEEP?

    Glandular cell abnormalities are not usually identified by a pap. The pap only samples some tissue from the outer cervix (squamous cells). The ECC is the only non-surgical way to sample the canal where the glandular cells are. The LEEP and/or CKC (cold knife cone - preferred procedure for AIS) are the surgical ways to biopsy the glandular canals to get a better idea of the glandular involvement.

    Have you had repeated colposcopies and ECCs after the AIS diagnosis? Did you have a second LEEP after you had the AIS diagnosis? If so, it is possible that the dysplasia was removed and you are fine.

    Have you had a uterine biopsy?

    You didn't say how old you are. A women younger than 30 is more likely to be able to recover/heal from HPV related dysplasia better than a woman over 30.

    Are you wanting to preserve your fertility?

    As far as other tests, right now, they need to be checking on the cervical canal with ECCs and/or CKCs (cold knife cones, not LEEP).

    I had a CT of my pelvis a few months before diagnosis with Adenocarcinoma Ia1* and did not show up on the scan. The lesion was too small. If it shows up on a CD or MRI, then then I'd assume it is quite invasive.

    Yes, you should have been sent to a gyn/onc with the AIS results.

    I hope this gives you a little more info.

    * I was diagnosed with Adenocarcinoma Ia1 2 years ago by way of a CKC. The gyn/onc did a total hyst (cervix and uterus only) and I didn't need chemo or radiation since the cancer was found so early. I was released from the gyn/onc at my 1 year anniversary. I am now 2 years cancer free. My reasons for saying this is because if adenocarcinoma is found early enough, treatment is relatively conservative (in my opinion - compared with many other cancers) and there are other options (repeated CKCs, a trachelectomy, etc).
    This questions is for Pickle Eyes...I think I've read every post you've ever written so far! I too have gotten an AIS result from a colposcopy and biopsy. You say in your post that glandular abnormalities aren't usually found by paps because only squamous cells are on the outer cervix. I have a spot - able to be seen through colposcopy - on my cervix that my regular OBGYN didn't think was alarming during colposcopy but biopsied it anyway. There is also a spot that he thought was precancer on my cervix (turned out to be CIN II), so he was right about that one. I've been referred to a gyn/onc, saw him yesterday and he chose to do a "deep leep" as he called it, and tool A LOT of my cervix. Now I'm supposed to go back in 2 weeks. Of course I am INSANE with worry because of the difficult and rarer nature of Adenocarcinoma. I'm scared out of my mind. My main question is, how did a spot of AIS show up on the outside of my cervix? My ECC was clean, it said benign cells. (The gyn/onc did another right after the LEEP yesterday). I would love some information from someone...is it terrible that a spot has shown up on the outside of my cervix?

     
    Old 09-23-2010, 09:19 PM   #10
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    Re: Had AIS two years ago and was never told!!

    I have just been diagnosed with Adenocarcinoma in situ after a very "deep LEEP" performed by a gyn/oncologist. All my ECC's have ALWAYS come back clean. That is what is scary to me and is guiding my decision to have a hysterectomy. The "check-up" tests that they do to test for recurrence just aren't reliable enough for me. My diagnosis was a complete shock to my regular gyn and he's been practicing for over 20 years. Not trying to scare anyone, just telling you what has happened to me.

     
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