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Need insight - I'm going crazy re CIS Cervix Need insight - I'm going crazy re CIS Cervix

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Unread 12-13-2002, 05:54 PM
Need insight - I'm going crazy re CIS Cervix

Hello everyone. I posted quite a while ago about my situation and I am asking again for all of your wonderful guidance and advice. Please, if anyone had some advice for me, I would really appreciate it!

To fill you in, way back in 2000, I had my very first abnormal pap. (I was 35 at the time). It came back CIS (pretty scary). I had a colposcopy and biopsy and surprisingly enough everything came back fine. I had no further treatment. (Although, at the time I was 1 month pregnant and therefore they did not do anything endocervical.) I had my baby and in March of this year went in for my routine pap (I had 3 normal ones since the first problem). This pap again comes back CIS. I have a colpo/biopsy and a LEEP. My LEEP path came back CIS, multiple quadrants, with unclear margins and endocervical gland involvement. My GYN seemed pretty calm about it and wanted to just follow up with a colpo. Well, I was not calm, I just could not be comfortable with the unclear margins. So to make a long story short, I saw a GYN/ONC who concurred with the GYN, and then I went to see a different GYN. All together, since my LEEP in May, I have had 3 paps, 2 colpos and 2 ECC's and they have all come back normal.

Here is my question. I am now at the point where I will only be getting pap smears every 3 months. I am extremely anxious about this. I just can't help worrying that there are bad cells left that are going to grow into an invasive cancer. Am I doing enough? Should I see another GYN/ONC? Should I be demanding a hysterectomy? I really need some guidance. I am driving myself crazy with worry. I just don't want to be sorry someday for not being more aggressive, but on the other hand, I have already seen 3 drs! I just can't figure out why I read on these boards that some drs suggest hysterectomy for my problem - but I have gone to 3 and they all tell me I only need follow up paps!

Thank you all for any advice - I would really appreciate it.
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Unread 12-13-2002, 11:16 PM
Need insight - I'm going crazy re CIS Cervix


Well, having 3 drs agree on the course of treatment seems like a good thing, but I do understand your anxiety. Did you find out the reasons they feel OK about "watching it" with frequent Paps even with the unclear margins?

The first time I was dx'd with dyplasia I just wanted it all out, but the cone did take care of it and I was OK for 10 yrs. I can't really give you any've got opinions from the experts but you have to be comfortable with your decision.

Unread 12-14-2002, 02:16 PM
Need insight - I'm going crazy re CIS Cervix

Worrying can really wear you down physically and emotionally. ? If going to another gyn/onc will give you peace of mind then why not go. Try not to worry too much. When I needed a hyster 3 doctors agreed that I needed it. You have 3 who say you don't.
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Unread 12-15-2002, 10:30 AM
Hi Mamic:

I know how you feel...I was just recently diagnosed with endocervical adenocarcinoma in situ. The cone biopsy did show clear margins but prior to that I also had several paps, colposcopy, additional tissue samples, then the cone...some came back normal, others, did not! My doc immediately suggested the historectomy (coming up Jan 8) because she know's that I will not be having kids (I'm 40) & due to my past history (HPV). So, I do find it interesting that so many docs differ on their final/ultimate treatment recommendations. I'm sure that your history plays a large part in their just start asking them questions so that it makes more sense to you! It can be so confusing but thru all my readings here so far, my list of questions/suggestions (thanx to all the ladies on this site) has grown quite a bit!

Using my own situation as an example, I have read some other stories (about ladies with the same dx), where the ladies had TAH's with cancer cells found in areas other than the cervix & this was with clear margin's on their cervical cones. My doc planned on doing a TVH (cervix & uterus vaginally only) & thats it! Now, I will ask her if she thinks it may be better to do it abdominally (with an oncologist present), so that all the organs can be checked & possibly removed if necessary! Regardless of this being a slow growing cancer, I also hate the thought of just walking around with a possibility that there's more cancer in there somewhere! If I can lessen the chances up front by having everything checked, removed if necessary, then why not?! This is all traumatic enough as it is...if I don't request these things be done & ultimately get them done (unless the doc comes up with some real good reasons) then, I will really feel like I'm living on the edge!

You need to keep checking, asking your doc's questions till YOU feel as comfortable as possible with everything they're has to all make sense to you! Best of luck to you and keep us posted. Hope this helps a little & sorry it's so long!

Unread 12-17-2002, 10:17 AM

You have done a great job of covering your bases. I wish I had been more persistent about 2nd and 3rd opinions but I was scared stupid, literally!

The first thing my OB/GYN asked me was whether or not I wished to have more children (I was 35 at the time), when I said no she said I should opt for the hyst. to pretty much eliminate further occurrences of CIN/CINIII. That is what I did. It was my choice and I feel good about my decision. I'm a happy woman today.

I wish there were something definitive to tell you but nothing is for sure. Three doctors telling you the same thing is pretty good reassurance to wait until your next pap in a couple of months but in the end the decision will really be yours. Doctors can suggest but they make no guarantees on diagnosis. Educate yourself and also if you are considering a hyst, ask lots of questions and read the posts found here, they are very helpful.

My aunt had CIS/CINIII over 35 years ago. She had a cold knife cone (which doesn't damage margins of biopsy for better pathology analysis) after that she had a baby and is still dysplasia free so you never really know. CIS/CINIII is one of those conditions that is hard to predict what the end outcome will be.

I can really empathize with your fear. It's a terrible place to be. You have done a great job of getting opinions and staying on top of things. I hope you can get a little peace of mind knowing there are Sisters who are praying for you and who have been there, done that and are willing to share.

Take care and I wish you the best,

TAH/BSO for CIS/CINIII, cone didn't have 100% clear margins and severe adhesions from a c-section.

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