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  • Having cold knife cone CIN III ECC and cervix

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    Old 09-15-2004, 05:59 AM   #1
    wtg4grl
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    Having cold knife cone CIN III ECC and cervix

    I hope there is someone who has gone through this mess. To make a long story short. I have been having negative pap smears for over 16 years and this year the pap smear showed hgsil (high grade dysplasia) and agusc.

    Follow-up colpospsy showed on biopsy on cervix extensive CIN III with no carcinoma present. ECC was done and showed CIN III in the endocervical canal. This showed only squamous features. Well I though endocervical canal only had glandular. So i am thinking that they missed some adenocarcinama. What to do you think?

    Now the doctor wants to do a cold cone knife cause he says the leep does not reach higher up in the canal. I thought they do the leep even when its up in the canal. I am getting real worried cause the doctor might not be telling me everything. I want to have children so this is really getting me upset and nervous. I am to the point of severe depression.

    If any of you had a cone please tell me how it went and for what reasons why the doctor decided to do a cone.

    I feel like I am a worst case scenario cause I am the unfortunate one to get a cold knife cone instead of a leep. Has anyone have CIN III on biposy and ecc and then showed to have cancer on the cone.

    My goodness I am so scared, please help with any info you might have. I will truly appreciate it.

    bonnie

     
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    Old 09-15-2004, 03:10 PM   #2
    jammer71
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    Re: Having cold knife cone CIN III ECC and cervix

    WTG4GRL,
    I had a cone biopsy on August 10th, I was put to sleep and woke up with some mild cramping, I guess the worst part for me was the test results and the bleeding for 5weeks afterwards. If you have any other questions let me know. I think you should talk to your doctor and make sure he tells you exactly whats going on and if I were you I would ask for a copy of all records, you would be suprised as to what is in them that they do not tell you. Hope this helps, take care.
    Jeanette

     
    Old 09-15-2004, 03:55 PM   #3
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    Re: Having cold knife cone CIN III ECC and cervix

    Quote:
    Originally Posted by wtg4grl
    I hope there is someone who has gone through this mess. To make a long story short. I have been having negative pap smears for over 16 years and this year the pap smear showed hgsil (high grade dysplasia) and agusc.

    Follow-up colpospsy showed on biopsy on cervix extensive CIN III with no carcinoma present. ECC was done and showed CIN III in the endocervical canal. This showed only squamous features. Well I though endocervical canal only had glandular. So i am thinking that they missed some adenocarcinama. What to do you think?

    Now the doctor wants to do a cold cone knife cause he says the leep does not reach higher up in the canal. I thought they do the leep even when its up in the canal. I am getting real worried cause the doctor might not be telling me everything. I want to have children so this is really getting me upset and nervous. I am to the point of severe depression.

    If any of you had a cone please tell me how it went and for what reasons why the doctor decided to do a cone.

    I feel like I am a worst case scenario cause I am the unfortunate one to get a cold knife cone instead of a leep. Has anyone have CIN III on biposy and ecc and then showed to have cancer on the cone.

    My goodness I am so scared, please help with any info you might have. I will truly appreciate it.

    bonnie
    Sorry to doge your questions on everything but what is a ECC? I've been hearing a lot about that.

     
    Old 09-15-2004, 06:44 PM   #4
    jammer71
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    Re: Having cold knife cone CIN III ECC and cervix

    I believe the ECC is for Endocervical scraping.

     
    Old 09-15-2004, 06:56 PM   #5
    wtg4grl
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    Re: Having cold knife cone CIN III ECC and cervix

    Quote:
    Originally Posted by jammer71
    I believe the ECC is for Endocervical scraping.
    Jammer,

    I have your experience and sorry of what you are going through. You are in my thoughts! From what you said your healing process was not that great after the cone. I hope you are doing ok now. How long did the reports come back to you after you had the cone?

    bonnie

     
    Old 09-15-2004, 07:04 PM   #6
    Soulcatcher
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    Re: Having cold knife cone CIN III ECC and cervix

    I had a cold knife and so did one of my friends. I had the best sleep I ever had and feel fine. NO cramping, no bleeding and if there was it was too minor to notice. As far as children I already have a 4,3,3 year old but my friend had two previous to the surgery and has had two babies after with no trouble. You can ALWAYS get a second opinion. I do have questions to why you still had cells left behind. But I guess that's why they have re paps. I understand your worry about children. That was a concern of mine even though I had three, I may want another. Also just to reasure you, you will still have your overies and can still have a child even if you are not the one that carries it. I would ask him to draw a map of your area and have him show you exactly how much he is planning on taking out. I do agree that a second opinion may be a good option if you are unsure. Better safe than sorry and don't worry about hurting your doctors feelings. Its your body. Good luck.

     
    Old 09-15-2004, 10:35 PM   #7
    skf33
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    Re: Having cold knife cone CIN III ECC and cervix

    Hi.

    I had a cold knife cone done august 25th.
    My pap came back HSIL.
    My colp came back HSIL. Severe dysplasia.
    My endocervical scraping came back benign.
    I had my cone done.....I went to the hospital for general anesthesia, the whole process took about an hour.....I went home about noon. I did not react well with anesthsia so I was sickly for awhile. Procedure caused discomfort for about a week or so....moderate bleeding.....mild discharge black, and nearer the two week end, foul odor....which cleared up in a few days...
    I was told the cone was more effective than the leep. They could see further up into the canal, and take more areas off the cervix and take margins of good tissues also....

    I also worried very much about if the cone would show cancer...
    My cone came back with CIN 2 and CIN 3 (precancerous not cancerous insitu) and the cervical canal was negative....

    So, the cone completely corresponded with the initil pap and colp.

    I say dont worry, you'll do fine....I'm a big baby, if I can do it I know you can!

    All I do know is repeat paps in 6 monthes, but I opted to go back in 3 or 4 just to make sure.

    I'm 43.

    Good luck, you'll do fine.....

     
    Old 09-16-2004, 05:00 AM   #8
    wtg4grl
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    Re: Having cold knife cone CIN III ECC and cervix

    skf33,
    If you don't mind me asking, why did yur md decide to do cold knife if your endocervical canal was benign. I thought they only do a cone if the canal was involved.
    bonnie

    ]Hi.

    I had a cold knife cone done august 25th.
    My pap came back HSIL.
    My colp came back HSIL. Severe dysplasia.
    My endocervical scraping came back benign.
    I had my cone done.....I went to the hospital for general anesthesia, the whole process took about an hour.....I went home about noon. I did not react well with anesthsia so I was sickly for awhile. Procedure caused discomfort for about a week or so....moderate bleeding.....mild discharge black, and nearer the two week end, foul odor....which cleared up in a few days...
    I was told the cone was more effective than the leep. They could see further up into the canal, and take more areas off the cervix and take margins of good tissues also....

    I also worried very much about if the cone would show cancer...
    My cone came back with CIN 2 and CIN 3 (precancerous not cancerous insitu) and the cervical canal was negative....

    So, the cone completely corresponded with the initil pap and colp.

    I say dont worry, you'll do fine....I'm a big baby, if I can do it I know you can!

    All I do know is repeat paps in 6 monthes, but I opted to go back in 3 or 4 just to make sure.

    I'm 43.

    Good luck, you'll do fine.....[/QUOTE]

     
    Old 09-16-2004, 06:17 AM   #9
    jammer71
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    Re: Having cold knife cone CIN III ECC and cervix

    bonnie,
    The reports did not come back for two weeks and then another week for a second opinion. Take care,
    Jeanette

     
    Old 09-16-2004, 12:40 PM   #10
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    Re: Having cold knife cone CIN III ECC and cervix

    Quote:
    Originally Posted by wtg4grl
    I hope there is someone who has gone through this mess. To make a long story short. I have been having negative pap smears for over 16 years and this year the pap smear showed hgsil (high grade dysplasia) and agusc.

    Follow-up colpospsy showed on biopsy on cervix extensive CIN III with no carcinoma present. ECC was done and showed CIN III in the endocervical canal. This showed only squamous features. Well I though endocervical canal only had glandular. So i am thinking that they missed some adenocarcinama. What to do you think?

    Now the doctor wants to do a cold cone knife cause he says the leep does not reach higher up in the canal. I thought they do the leep even when its up in the canal. I am getting real worried cause the doctor might not be telling me everything. I want to have children so this is really getting me upset and nervous. I am to the point of severe depression.

    If any of you had a cone please tell me how it went and for what reasons why the doctor decided to do a cone.

    I feel like I am a worst case scenario cause I am the unfortunate one to get a cold knife cone instead of a leep. Has anyone have CIN III on biposy and ecc and then showed to have cancer on the cone.

    My goodness I am so scared, please help with any info you might have. I will truly appreciate it.

    bonnie
    Dear Bonnie,

    I also had CIN 3 but i had a LEEP because my ECC was negative. But I asked my doc quite a bit about cone because for a while we thought my dysplasia had returned, and the next thing she would have wanted to do was a cone. There can be many reasons why doctors chose to do cones instead of LEEPs. The cone is a more invasive and therefore more aggressive procedure, so sometimes docs chose it if they want to be more aggressive. It is true that doctors generally chose cone over leep when the endocervical canal is involved, because it is indeed harder to reach up there with the LEEP. But you are right, sometimes LEEP can be done when the canal is involved, but its really determined on a case to case basis. The doc probably chose to do cone because she determined your dysplasia in the canal was too hard to reach by leep --maybe too high up there or in a difficult place to reach with cone. Ask her why she wants to do the cone instead of LEEP, but my guess is what i wrote above is probably what she will explain to you. But dont be too scared about the whole cone vs. LEEP thing, its not a bad thing that you are having the cone done instead, the doc is simply chosing the procedure she deems best to remove your personal case of dysplasia.

    As far as finding cancer when they go in for the cone, i too would say its pretty unlikely. The colp is a more precise diagnostic tool than the pap, and since it showed the same thing as your pap, it is most likely that you wont have any big surprises when they go for the cone. Of course unfortunately there are always exceptions, but i think it would be pretty unlikely.

    As far as children, cone is more aggressive, so technically it has the potential to pose more fertility problems than LEEP. However, my doctor told me that in general, it should still be very possible to have children after a cone. She seemed of the opinion that it is really when you need several procedures to take care of the dysplasia that fertility starts to become a problem. Also, know that there are many things docs can do to promote fertility after these proceedures --for instance there is a procedure where they put a stich in your cervix to make it stronger, i fogot what its called, so ask your doc about this too. So in conclusion, according to my doc, you shouldnt have too much to worry about the fertility.

    But yes, if you feel you need a second opinion, definitely get one! you should always feel comfortable with your doc, and remember, ask as many questions as you want!! i always pester my doc and come in with a written list of stuff i want to ask her!

    Good luck, all the best,
    Alex

     
    Old 09-17-2004, 04:58 AM   #11
    wtg4grl
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    Re: Having cold knife cone CIN III ECC and cervix

    Thanks for all your responses. It helped so much. I feel so much better. From all your posts I got reassurance that I am the one who is making my self nuts. Its just that my mind is spinning of what ifs. My dh husband read your posts and felt reassured also. He has been telling me not to worry, just get it cut out. Again thank you to you all.

    I am now starting a new life. Taking tons of vitamins and quit smoking. I quit smoking!!!!!!!! I am so happy that I quit but its a hard process.

    I feel like I want to start a whole national force on this. There should be more awareness on this. I felt like there should be more studies done.

    Bonnie

     
    Old 09-17-2004, 09:51 PM   #12
    skf33
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    Re: Having cold knife cone CIN III ECC and cervix

    Quote:
    Originally Posted by wtg4grl
    skf33,
    If you don't mind me asking, why did yur md decide to do cold knife if your endocervical canal was benign. I thought they only do a cone if the canal was involved.
    bonnie

    ~~ Hi bonnie. My md said he was doing what is his protocol when a patient comes back with severe dysplasia, HSIL, CIN 2/3.....he prefers a cone over a leep because it offers more chance to check more tissues, and more chance to get more tissues (including good ones) for pathology...
    He also stressed that cold cone is not just for diagnosis, its used for treatment....in most cases he removes the abnormal cells, and if the path comes back okay (which mine did) he follows up with smears or colps, until a number is satisfactory. To leave your cervix covered with high grade pre cancerous cells is only asking for the inevitable to happen.....progression...
    Removal of the cells (cone) is his treatment of choice when a hysterectomy is NOT warranted. Besides, most insurances will NOT pay for a hysterectomy unless its completed warranted and they prefer you follow the md's plan.
    I for one, was glad to have the cone....
    I just wanted the cells off....take them out, get them out....
    IF, they come back I believe we will opt for a hysterectomy...

    Thanks.






    I had a cold knife cone done august 25th.
    My pap came back HSIL.
    My colp came back HSIL. Severe dysplasia.
    My endocervical scraping came back benign.
    I had my cone done.....I went to the hospital for general anesthesia, the whole process took about an hour.....I went home about noon. I did not react well with anesthsia so I was sickly for awhile. Procedure caused discomfort for about a week or so....moderate bleeding.....mild discharge black, and nearer the two week end, foul odor....which cleared up in a few days...
    I was told the cone was more effective than the leep. They could see further up into the canal, and take more areas off the cervix and take margins of good tissues also....

    I also worried very much about if the cone would show cancer...
    My cone came back with CIN 2 and CIN 3 (precancerous not cancerous insitu) and the cervical canal was negative....

    So, the cone completely corresponded with the initil pap and colp.

    I say dont worry, you'll do fine....I'm a big baby, if I can do it I know you can!

    All I do know is repeat paps in 6 monthes, but I opted to go back in 3 or 4 just to make sure.

    I'm 43.

    Good luck, you'll do fine.....
    [/QUOTE]

     
    Old 09-22-2004, 05:02 PM   #13
    jammer71
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    Re: Having cold knife cone CIN III ECC and cervix

    Bonnie,
    I had to wait only 4 days for the reports and then two weeks, because they wanted a gyn/oco. to review them and he was out of the office for a week and then had to find time to read it. I go in for a radical hyst. on October 5th.
    Take care
    Jeanette

     
    Old 09-22-2004, 05:08 PM   #14
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    Re: Having cold knife cone CIN III ECC and cervix

    Quote:
    Originally Posted by jammer71
    Bonnie,
    I had to wait only 4 days for the reports and then two weeks, because they wanted a gyn/oco. to review them and he was out of the office for a week and then had to find time to read it. I go in for a radical hyst. on October 5th.
    Take care
    Jeanette

    Good for you on stop smoking! Smoking can be a BIG factor on causing dysplasia when first diagnosed with it.

    Take your vitamins girl!

     
    Old 09-29-2004, 01:16 PM   #15
    edwardthefirst
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    Re: Having cold knife cone CIN III ECC and cervix

    Just got the biopsy/colp and she said 90% she is going to suggest a cone, b/c the two areas of high grade-suggestive are near the canal liek someone above said. She said its much better to have one cone rather than multiple of the more minor procedures, once you go again and again it starts to pose more risks. Im really scared about the cone but I just want it all gone, rather than having to do a ton of little procedures. And my RX was 90 percent low grade, 10 percent high grade . She also said if its spread out rather than in one little '***' then the freezing and leep wont get it all

    She said 85 percent of pregnancies are ok, and the other 15 have either problems doing a vaginal birth, OR misscariages! EEEEKKK

    I know you cant post sites here ,but does anyone know of a general place to look for info on the cone procedure ?

     
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