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  • AIS or adenocarcinoma in situ

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    Old 01-06-2009, 12:01 PM   #1
    Redhead32
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    AIS or adenocarcinoma in situ

    Hi All,

    About two weeks ago I was diagnosed with AIS. I went directly to an ob/gyn oncologist and am having a cone/top hat/leep done on Friday. I am 32, newly engaged and would love to have one child soon (I have none thus far), so I am hoping to avoid the hysterectomy at this point. I have a couple of requests from other AIS patients:

    1. For those that got negative margins in their leep/cone procedure, did the doctor recommend trying to conceive earlier than later and then having a hysterectomy at the same time? This is an option I am considering.

    2. I would love to hear stories of other people having a leep/cold knife done for AIS. I am starting to freak out a bit and would appreciate support.

    3. Does it pay to have the HPV test to learn my strain? And if I only have one of the "cancer" strains - I am thinking of doing Gardasil...yes I am past the age studied by the FDA to take it, but there are ongoing studies looking at older patients taking the vaccine. Has anyone done this?

    Thanks in advance! And wish me luck!

    D

     
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    Old 01-06-2009, 05:42 PM   #2
    Pickle Eyes
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    Re: AIS or adenocarcinoma in situ

    Hi Redhead, I am sorry you have received this diagnosis, but am really glad you have gone to a gyn/onc! They are specially trained in taking care of severe dysplasia and cancer.

    I'm 45 and have gone for my paps every year since I was 19. They have always come back fine. Last December (08), my doctor did the HPV/dna test at the same time as my pap. The pap came back fine, but the HPV test came back positive for high risk HPV (it didn't tell what strains). My doctor sent me to a gyn for my colpo. The doctor saw no need to take a biopsy of my cervix because the colpo didn't show any problems. "Just to check" she did an ECC (endocervical curettage). It showed adenocarcinoma in situ. Two weeks later I had a cold knife cone biopsy. That came back adenocarcinoma Ia1. Two weeks later I was at a gyn/oncologist's office discussing my treatment (surgery) options. Two months later I had my hyst to remove just my cervix and uterus as my only needed treatment for my cancer. I am blessed that the cancer was detected so early. I thank God for the HPV/dna test and for the ECC (and both doctors, of course).

    ANYWAY, have you scheduled your LEEP yet? I've read that many doctors do the cold knife cone for AIS. It takes a larger, more indepth sample than the LEEP. It also preserves the edges of the tissue so the doctor can determine the margins better. The LEEP singes the edges of the biopsy/sample as well as the remaining cervix. That helps reduce bleeding, but it burns the edges of the sample. My doctor did (basically) an LEEP after the CKC to cauterize and reduce bleeding.

    Because of the nature of AIS (and adenocarcinoma) doctors usually treat it more agressively than they do carcinoma or CIS (squamous cells dysplasia/cancer). For that reason, I suggest you talk to your doctor about what happens if margins are good and if margins are not good with your LEEP (or CKC). IF (and I don't say this to scare you, but to help give you info to ask your doctor) ask if he/she says you will need a hyst, ask about a Trachelectomy which is the surgical removal of the cervix only. This allows the woman the chance to get preganant (and maintain a pregnancy). The baby is then usually delivered via C section. Anyway, just something for you to look into as an option.

    If you have any questions, please write back. There are many wonderful women on this board who will be very willing to help as best they can!

     
    Old 01-06-2009, 10:09 PM   #3
    Redhead32
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    Re: AIS or adenocarcinoma in situ

    Hi Pickle Eyes!
    Whew! So nice to hear someone's story and and talk to someone else who has had this. My procedure sheet for surgery says " leep, ECC, top hat, possible cone." My doctor said that he is taking a cylinder shape from my cervix to get the entire canal and the way he is doing it will allow for a second cone if needed. He is a gyn/onc and has done many of these before, is young (which I like) and is well published in cervical cancer. So, I feel good about him. I haven't talked to him much about step "2" in the case of a positive margin, but I do understand that a hysterectomy may be in my future. I will inquire about the trachelectomy as it would be great to preserve fertility.

    I am thinking about asking my gyn to give me Gardasil if I get negative margins. They have been studying it in older patients and even in ones already infected with HPV. In the ones already infected, incidents of AIS/CIN were reduced by 40 percent. Plus, I don't want any strains that I don't already have. What are you thoughts?

    Again, I so appreciate your feedback!! My surgery is Friday - wish me luck!!

     
    Old 01-07-2009, 05:43 PM   #4
    Pickle Eyes
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    Re: AIS or adenocarcinoma in situ

    Hi Redhead, I am so glad to hear you are going to a gyn/onc! It is also good to know he has explained about the LEEP (which is sometimes called a cone because the tissue removed is cone shaped, but sometimes a "cone" is just used for a cold knife cone biopsy - so it is good to get it clarified as to which "cone" the doctor is planning to do).

    I don't know about the Gardasil shot, especially for older women. I think it would be great if the shot (or another shot) could be found to help older (than 25ish) women. Personally, I am not considering getting the shot because I am 45 and because I am married (and we have been together for 16.5 years) and honestly (and maybe naively? I hope not) we'll be together until death-do-us-part so I don't anticipate being exposed to any more strans. BUT, then I've read a little about the vaccine helping (some women) with strains they have already been exposed to. I don't know what strain(s) I had, so I don't know if the vaccine would be helpful or not. I just don't know. So I'm talkin out my foot . . . I guess my last bit of 2cents about that would be, if it won't hurt to get the vaccine, then it might be a good idea. Discuss it with your doctor.

    Good luck on Friday! You are in my thoughts and prayers! Is your doctor doing your LEEP in the office or as an out-patient (general anesthesia) procedure?

    Talk with you later!

     
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