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  • HGISL followed by repeat pap...Malpractice?

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    Old 12-11-2006, 01:06 PM   #1
    wendy674
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    HGISL followed by repeat pap...Malpractice?

    My story is a little long so I'll try to give a brief overview. Just wondering if any other physician followed up by just repeat pap after High Grade Intraepilhelial Squamous Cell Lesion (HGISL) was detected on yearly pap. Here is my history...

    Sept 2003- Pap showed HGISL
    (Never notified by GYN about abnormal result until I called the office in April to chang the Birth Control pill I was on due to side effects. A repeat pap was recomemded at that time).

    April 2004 - Repeat pap was done right away and came back fine, however was tested for HPV at that time and came back positive of High Risk HPV. I was only told by the office that my pap came back fine. I was never informed that I was HPV positive.

    Jan 2005 - Switch OB/GYN's due to my past experience and had ok pap...no HPV test at that time

    Jan 2006 - Pap was normal however was again tested for HPV due to new office practice and this time again showed high risk HPV (Still never notified of HPV status).

    Sept 2006 - went to GYN for pelvic pain and asked to be checked out for everything due to the amount of pain I was in. Turned out I had a functional hemorragic ovarian cyst which was causing the pain, but pap cam back with abnormal glandular cells . It was at this point that I was finally notified that I had HPV and only then because I requested my pathology report and it was there in writing.

    October 2006 - Colposcopy with biobsy could not rule out high grade cervical lesion however was not conclusive.

    November 2006- LEEP procedure done. Results were High grade glandular lesion (AIS-Adenocarcinoma in situ) with positive margins. Only good new is that the ECC came back with just some inflammation no dysplasia.

    Currently seeing multiple GYN onclolgists for best treatment option to perserve fertility. I think I'm in for a cone next. I'm 32, married for 3 1/2 years and just getting ready to try to start a family when all of this was discovered.

    Has anyone had a similiar experience???? Has anyone just been followed by paps after a HGISL was detected on Pap? Has anyone had a HGISL turn in to adenocarcinoma in situ or are the two not related (I know that most cases are HPV related but maybe one does not progress to the other).

    Sorry for the length of this but I find that I'm deperate for answers to these questions. I knew back in 2003 that it was wrong not to notify me of my abnormal pap, but I really think that the dr may have be negligent in my care as well by not referring me for a colposcopy back then. I get sick to my stomach everytime I think that this could have been diagnosed three years earlier if the OB/GYN had just done better follow up. Now it may cost me my fertility or even worse my life. Hopefully neither are the case but only time will tell. Thanks for reading and any insight would be welcome.

    Please make sure that each of you are very agressive with your care and what your pathology reports say. There is a lot of crap on the internet, but a lot of good information too. You should have the ultimate say in how you are cared for by the medical profession.

    Wendy

     
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    Old 12-11-2006, 05:18 PM   #2
    akinak
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    Re: HGISL followed by repeat pap...Malpractice?

    Ahhhh, Wendy. I looked at your other posting first. Now I have the whole scoop. I know that I had abnormal PAPs before and went to get checked again. I don't think Dr's knew how bad this stuff was. I got re-tested and everything came back fine. Couple years went by and it appeared again. If I remember correctly, there are two kinds of test. A PAP and a HPV. Dr's weren't doing the HPV b/c of $$$. You had to request it. I hadn't even heard of HPV in 2000, how would I know to ask for it? Now it is common and they are even talking about it on the TV. I just really think that the Dr's didn't know how bad this stuff is. I am surprised they wouldn't inform you that you did test positive though. I am not sure if any of this information is helpful. It has been a few years since I was in the middle of it all. The main reason why I decided to write on these threads is to inform women that second opinions are important. And that a hysterectomy is not your only option.

     
    Old 12-11-2006, 09:01 PM   #3
    wendy674
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    Re: HGISL followed by repeat pap...Malpractice?

    I would agree 110% Always get a second opinion especially in something as important as this. This could cost me my fertlity or possibly even worse (if that's even possible). I have my second opinion tomorrow and then my third after that. I want as much info as I can so that I am able to make an informed decision. New medical inovations come into play every day and if there is something better then the gold standard I want the ability to hear about it and then make a decision. To every woman on here....ask lots of questions and if your gut tells you that your physician is not right go with your gut and get a second opinion. Please, Please, Please don't ignore it and find the courage to be proactive in your treatment. Good luck to all of you who are in my situation.

     
    Old 12-13-2006, 10:26 AM   #4
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    Re: HGISL followed by repeat pap...Malpractice?

    Wendy,
    I can relate to your situation. I had my first abnormal pap this summer (HPV). I did the colposcopy/biopsy which should CIN II/HSIL. Had a Leep done in June. Got the results and the results came back CIN II-III. The first LEEP did not take care of the high grade dysplasia. After A LOT of thought, I went in for a second LEEP in October and got the results that were CIN III extended to the outer margin. I was so confused…and still am…why didn't two LEEPS take care of it? I got another opinion from a gynecologist/oncologist and she is now recommended a cone biopsy. I am so confused and scared. I am 24 and getting married in 7 months. I plan to start having children in the next 2 years. I just don’t quite understand why my gynecologist had me go through 2 LEEP procedures in 5 months, and it's still not over with. In the mean time, like you Wendy, I am considering a THIRD opinion before any more of my cervix is removed. Please keep us updated on how the third opinion goes and I wish you the best!!!

     
    Old 12-13-2006, 07:36 PM   #5
    wendy674
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    Re: HGISL followed by repeat pap...Malpractice?

    Well I have now received 3 opinions and two of the three GYN-oncologists have advised the same thing. Perserving my fertility is very important to me and we have decided to take the watch and wait approach. Both GYN-oncologists have said that just because the margins of the Leep biobsy were possible they think that they still may have gotten all the bad cells due to the fact that they cauterize (burn) the cervix after they take the sample to stop the bleeding. So in all actuality they say that they go a little deeper then the actual tissue biopsy. I'm hoping that they are right and will let god and fate tell the rest of the story.

    I will be followed every three months with a pap, colposcopy, and ECC to see if I get any additional abnormal paps. One GYN-oncologist told me to get pregnant right away and the other said wait 6 months. I think again I'm going to let a higher power decide what is best for me. Thanks to those of you who replied. Your support and words of wisdom are so helpful.

    I do agree that ALL women should be proactive with you GYN. Although it's not nice to find out you are HPV positive....knowledge is power and you can help to determine your fate and most importantly your treatment if you need it. As for the malpractice....I think I'm going to let that go. I don't think it's worth my energy and heartache. I want to be better and have a healthy baby. I think that is a better place to focus my energy. I do however want to let that physician know about her or her office poor practice standards and I just haven't figured out how I will go about doing that as of yet.

     
    Old 12-14-2006, 03:29 AM   #6
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    Re: HGISL followed by repeat pap...Malpractice?

    That sounds like a good plan. I had extensive carcinoma in situ, and had a LEEP. The margins were "unable to be guarenteed" so I had a cold knife. The cold knife biopsy came back negative for CIS! So, long story short, the LEEP had gotten everything... they just couldn't tell due to the cauterized edges. So.... you have a good plan!

     
    Old 12-16-2006, 08:11 PM   #7
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    Re: HGISL followed by repeat pap...Malpractice?

    Hi Wendy,

    My case was a bit different, my dr called me right away with abnormal pap results to schedule for a biopsy, a week after the biopsy I got a leep conization and confirmed HGISL. After that I had paps done evry 3 months, then every 6 months and then back to an annual pap. I was told that the conization can make more difficult to get pregnant but still can maintain fertility that was very important to me as well.

    I know is a different case but hope can help you.

    Laurie

     
    Old 12-16-2006, 08:12 PM   #8
    dreamer36
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    Re: HGISL followed by repeat pap...Malpractice?

    Hi Wendy,

    My case was a bit different, my dr called me right away with abnormal pap results to schedule for a biopsy, a week after the biopsy I got a leep conization and confirmed HGISL. After that I had paps done evry 3 months, then every 6 months and then back to an annual pap. I was told that the conization can make more difficult to get pregnant but still can maintain fertility that was very important to me as well.

    I know is a different case but hope can help you.

    Laurie

     
    Old 12-16-2006, 08:12 PM   #9
    dreamer36
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    Re: HGISL followed by repeat pap...Malpractice?

    Hi Wendy,

    My case was a bit different, my dr called me right away with abnormal pap results to schedule for a biopsy, a week after the biopsy I got a leep conization and confirmed HGISL. After that I had paps done evry 3 months, then every 6 months and then back to an annual pap. I was told that the conization can make more difficult to get pregnant but still can maintain fertility that was very important to me as well.

    I know is a different case but hope can help you.

    Laurie

     
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