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  • anxiously waiting for cone biopsy (long)

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    Old 12-26-2004, 06:39 PM   #1
    Julie02
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    anxiously waiting for cone biopsy (long)

    The result for my pap was given to me 12/10 and my gyn said i have to go in for a cone biopsy. They are referring me to a gyn-onc and the soonest i could get a consult is 12/30. Then after that i have to wait for the actual cone which they said they aren't booking until mid to late January. Is it normal to wait this long? I am diagnosed with adenocarcinoma in situ so this will definatly become invasive unless I have treatment. I'm so scared! Any thoughts? Thanks

    btw, i am very upset about this situation b/c i was diagnosed with HGSIL in 11/02 and my former gyn only did a colposcopy, not even a biopsy. Since he didn't see anything he had me do a follow up in 5/03 in which he did another colposcopy (normal) and pap(normal). But i know now from researching that it is so easy to get a false negative on paps and if the lesion is high up in the endocervix (or just tired eyes or rushing) then they won't see it on the colposcope. That with HGSIL it should always be treated. I however, was never treated since 11/02 and now I have AIS.

     
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    Old 12-26-2004, 07:22 PM   #2
    jammer71
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    Re: anxiously waiting for cone biopsy (long)

    I too had adenocarcinoma, went through the pap, which was abnormal, the year before normal. I went in for the colp. had a biopsy right there, and then that came back adeno and then I went in for the cone biopsy, this all took place from July through September. I don't mean to frighten you but be thankful that your doctor has caught this, I was told that the adenocarcinoma is harder to detect. I did have to have a radical hyst. with lymph node dissection, which all came back ok, the cancer did not spread anywhere. I did not have to go through radiation or chemo, which I was thankful for. It is a stressful time and the waiting sucks I know. Just be patient with your doctor and make sure you write down all of your questions, because when you are in the office your mind goes blank, at least mine did at the beginning until I got over the shock and then I started a journal with all the times I called the dr., what they said and times I needed to be at the office. Just take a deep breath and stay calm, it will be ok. It sounds like they caught it early enough.
    Take care
    Jeanette

     
    Old 12-27-2004, 01:03 PM   #3
    Julie02
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    Re: anxiously waiting for cone biopsy (long)

    I am glad to hear that everything came back normal after surgery. I know I need to bring someone with me, I haven't gotten over the initial shock and pain. It has been very hard for me, despite the support from friends and family my mind can't stop racing. You are fortunate you didn't get chemo or radiation. You must have been staged early. Thanks for your input and kind words

     
    Old 12-27-2004, 07:14 PM   #4
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    Re: anxiously waiting for cone biopsy (long)

    Julie - I'm going to send a couple of hugs your way because it sounds like you've been through alot in the last couple years, the last few weeks in particular. It is so hard not to focus on the what-ifs - I've been there. I was glad to see in your post that you are going to see a gyn-onc. I think (from what I've read) that this is the best because they are specifically focused on pre-cancerous and cancerous changes to the cervix. I personally only saw a gyn - and I wish I would have seen a gyn-onc. But again, that's a what-if Your timeline for examination and surgery is probably standard, I think it varies so much from doctor to doctor, state to state (or province to province). I will be thinking of you on the 30th and hoping your appointment goes as well as it can. Follow jammers advice and write down all your questions, and don't feel bad about asking them. You deserve the best information you can get.

    (((hugs)))

    Karen

     
    Old 12-28-2004, 11:39 AM   #5
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    Re: anxiously waiting for cone biopsy (long)

    julie and caren -

    What is a gyn-onc? what does onc stand for, and how can i find one in my area? Also, how do you pronounce the "onc" part?

    thanks, julia88
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    Old 12-28-2004, 12:12 PM   #6
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    Re: anxiously waiting for cone biopsy (long)

    Julia - onc stands for oncologist, so a gyn-oncologist would focus specifically on pre-cancerous and cancerous conditions of the female organs. In Canada you have to be referred, I believe that's probably how it works in the states too. Some other boards I belong too the women recommend seeing a gyn-onc even for pre-cancerous because that is their specialty.....hope that helps

    Karen

     
    Old 12-28-2004, 01:56 PM   #7
    lobo1977
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    Re: anxiously waiting for cone biopsy (long)

    Im in Miami on blue cross and my regular gyn had me call a gyn-onc because she says i would bea good laser / leep candidate. Usually the gyn-onc are the ones who do laser, because its a new/ expensive machine that not many people are trained in. They are usually more knowlegeable about these procedures so if you CAN get to one for any procedure its usually better, but many gyn's do them a lot too and are skilled. I just feel more comfortable having a procedure w/ a doctor who specializes in procedures, rather than a gyn who does 100 other things, and mayb enot as MANY procedures.

     
    Old 12-28-2004, 02:08 PM   #8
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    Re: anxiously waiting for cone biopsy (long)

    "I just feel more comfortable having a procedure w/ a doctor who specializes in procedures, rather than a gyn who does 100 other things, and maybe not as MANY procedures."

    I hear you on that! Everything seemed to happen so fast in my situation - colpo one week, LEEP the next that my head was spinning. I didn't find this board or other sites until well after I had the LEEP - like two months or so. Had I known, or had the information.... well, it's water under the bridge. Suffice it to say that if this nasty stuff re-appears, I WILL be requesting a referral to a gyn-oncologist.

    Karen

     
    Old 12-28-2004, 06:49 PM   #9
    lobo1977
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    Re: anxiously waiting for cone biopsy (long)

    do you mean you would have had something other than the leep? its also good you had everything quick (unless you were pressured into something) b/c many people wait and wait and it gets worse!

     
    Old 12-28-2004, 08:27 PM   #10
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    Re: anxiously waiting for cone biopsy (long)

    Yes, I would have done things differently. I would have gone for a cone biopsy at the very least. Yes, I was very lucky it happened so quickly - if I hadn't scheduled the LEEP right there and then after the colpo I would have had to wait for at least one or two months. The LEEP biopsy showed a microinvasion (meaning early invasive cancer). If the colpo had caught the evidence of microinvasion, I would have been given a cone biopsy at minimum. So...I guess I can look at it this way. It looks like the LEEP got everything, so I was "cured" with the least invasive treatment (when compared to cold knife cone or hysterectomy). However, that does not ease my concerns regarding future paps and screening. That is something I am working on

    Karen

     
    Old 12-29-2004, 02:56 PM   #11
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    Re: anxiously waiting for cone biopsy (long)

    gyn-onc refers to a gynecology oncologist - cancer specialist. a good move. my prayers are with you especially since i am facing a cold knife cone biopsy soon. just got the news today. what really annoys me is that it hasn't even been a year since my LEEP and now more surgery. the LEEP was supposed to "fix" the problem, but obviously did not. thank god we have qualified doctors that are helping us regardless of the inconvenience or anxiety involved. god bless you and make sure to post your experience for all us sisters still in the "waiting room."

     
    Old 12-29-2004, 03:35 PM   #12
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    Re: anxiously waiting for cone biopsy (long)

    LEEP goddess - did you get clear margins with your previous leep? Just curious.... Sorry to hear you have to have the cold knife cone on top of the LEEP - I wish that there was just a simple cure!

    Karen

     
    Old 12-29-2004, 05:51 PM   #13
    Julie02
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    Re: anxiously waiting for cone biopsy (long)

    LEEP Goddess:

    I also would like to know if you had clear margins on your leep. Also, what were you staged at? I'm wondering why they didn't do the cold knife cone biopsy in the first place. The advantage to this is that this is the easiest to read in terms of margins. But also the leep and laser cone biopsy you can still read the margins too. There are just so many factors. It is also very important they remove the tissue out in one piece so the lab can map it when they see a positive margin.

    My gyn-onc told me today it is very common for a second procedure. I am not trying to worry you but rest assured it is not an issue for them (or you health wise) if they go in again. Some people get cone then the freezing. Others get a couple of cones. There are so many ways to do it. Don't worry, i am also going to get the cold knife cone biopsy. My thoughts are with you!

     
    Old 12-29-2004, 10:58 PM   #14
    lobo1977
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    Re: anxiously waiting for cone biopsy (long)

    I too am between the leep/laser and cold knife cone. im trying to avoid a cone as im 26 and want to have kids in the next 5 yrs. but i m afraid a leep wont do it. I was cin1-2 with one dr, and cin 2 with some 3 cells at the other. WHO KNOWS anymore, drs cant even comes up with matching results!

    I wonder what the line is between having a leep/laser and cone, i know ECC is one factor, but i also have a large area that is affected , my gyno said laser can treat a large area as long as its not very advanced. maybe for the large/advanced that is a CKC?

    I am torn between these two. I have an appt on the 13th with a new gyn/onc who does the laser and i guess will give me her opinion.

    I think the key is to get someone who has done a LOT of these, and who isnt too agressive. Its horrible to put your vagina in someone elses hands lol!

     
    Old 12-30-2004, 08:11 AM   #15
    Julie02
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    Re: anxiously waiting for cone biopsy (long)

    Its very difficult when drs have differing opinions. I just spoke/consulted with the second gyn-onc today. I don't know if there is a standard line where they decide to do laser over CKC. The first gyn-onc said she'd do CKC and that there is very little difference healing and complication wise between CKC and laser. The second gyn-onc said he does both CKC and laser cone but he tends to lean towards laser cone. He said there isn't much post-op bleeding with the laser. It seemed to me he is just more comfortable using the laser. When I asked him which produces easier to read margins he said that the laser tends to burn, thus skew the margins a little bit (my understanding) but it is very negligable.

     
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