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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

My first ECC showed AIS. My first cone diagnosed AdCA Ia1.
I don't know what my second ECC showed, but my second cone found a 2nd lesion. I don't know if it was deeper into the cervix (donut, or pear) or if it was just higher up toward the uterus. I hope that helps you regain some confidence in your ECC. I am very thankful for mine. I personally think (and it is just a gut instinct) that the ECC is more accurate in detecting abnormal cells than a PAP is. I think of it is that way because more of the cells in the canal are scraped (percentage wise) than are scraped during a pap. I think of the tool used for the ECC to be like a chimney sweep's broom going up the flue. I think of the tool for the pap being like a really stiff pain brush that has been smushed out so it isn't soft and pointy, but hard and sticks out a bit. Another silly expalanation of mine.

A ob/gyn did my cone. I don't know how deep she thinks she did the cone. I don't know if she just had in mind that it would be more AIS, not AdCA. I kind of suspect she thought it would be more AIS. I suspect that gyn/onc, doing the same first cone might have cut more and/or deeper. I have no reason to think that other than that is what my gut says.

Let me see how I can explain what the ECC scrapes, what the cold knife cone (or LEEP) cuts. Ok. Picture the bagel. The outside is a bit tough and "crusty" while the inside is doughy and softer. The ECC is a tiny brush/broom/bristly thing that gets pushed up into the tiny bagel hole. The cells that are scraped are biopsied. Those cells are just the crusty outer edge. The Cone (CKC or LEEP) cuts into the bagel and enlarges the hole. The piece they are cutting out is cone shaped (like a pointy ice cream cone or a orange street cone). The hole is larger at the bottom than at the top. This hole removes the crusty layer from that area and cuts into the softer inner-bagel. Over the next 2-6 weeks, the bagel forms a new outer layer (unlike a bagel). A doctor can cut a cone that is very wide at the bottom and very pointy at the top. The doctor can make the cone taller/deeper than other cones.

I don't know what my cone was (for the first or the second one - tall and thin? short and fat? tall and fat?). I have a lot of faith in the cone. It is the AIS/ AdCA that I don't have a lot of faith in. That being said, I have a lot of faith that your doctors are catching this very early. Remember, that the cone can be diagnostic AND treatment (what I hope for you) or it can just be diagnostic (like it was for me).

It took me forever to understand why I even needed the second cone since the first one diagnosed the cancer. When I went to my gyn/onc she gave me 3 major catagories for treatment option. Four or more options when you consider the if/then situations. Basically I had these options:
1) Radical hyst within the next couple of months (removing all organs plus the fatty tissue that surrounds them (part of the pelvis - can't remember its name omen? foramina? I don't remember.)
2) Within the next couple of months have a cold knife cone one day. If the cone showed anything from no cancer/lesions up to a lesion that was smaller than a couple of MM across and less than 1mm deep, then I would just have the total hyst (cervix and uterus only) the next day.
3) Within the next couple of months have a cold knife cone one day. If the cone showed a larger lesion, then I'd have to have a radical hyst the next day. (the hyst had to occur within 72 hours of the cone or there would be too much swelling and then we'd have to wait 6+ weeks to do the hyst)
4) Wait 3 or 4 months. Have another ECC. If the ECC was ok, then I'd have the total hyst. If the ECC showed AIS (or worse) then I'd have to have another cold knife cone (and follow those steps that I said in #2 and #3).

I chose option 2 or 3 because it allowed for me to have the hyst (which I was going to have one way or the other) at the beginning of my summer vacation (I teach) and have the summer to recover. Option 4, which is what my doc said she would have picked if it had been her, would have put me at having the ECC and possible cone/hyst in Aug or Sept, then being out for 4-6 weeks for recovery. I didn't choose option 1 because I wanted to keep all of the organs I could. I didn't choose 4 because I wanted to take care of the surgery over the summer.

Long story short (too late, I know! ;) ), I finally realized that the second cone just helped determine the extend of the surgery.

I was kind of ok with having the hyst. I was 44, never had kids and wasn't looking to start (yikes!). I had had a procedure in Dec 07 to get rid of fibroids in my uterus (and it was only minimally successful), but was trying to avoid the hyst. I wasn't (and am not) menopausal, but I was thinking no periods would be a nice thing! So I resigned myself to the hyst (one way or the other - radical or total) as a gonna-happen thing and just said OK.

Yes, my second CKC got all of the cancer, but we only know that because of the biopsy on the cervix and uterus after the hyst. Because we are talking AdCA, it is possible that there were other lesions (even though all tests pointed to no). AdCA is evil-sneaky!

When it comes to you, you have the option of the trachel . . . (forgot how to spell it). I think that is something that definately needs to be discussed with your doctor.

You know, I never gave my doctor (or her nurse) time to call me after my colpo/ECC or after the cone. I called them. I gave them 3-4 working days afterwards and called to ask if the pathology report came in. The nurse told me about the AIS (but then she didn't repeat herself - good thing I was writing it down as she talked) and I scheduled an appointment for a day or two later. After the cone, I called again. They called me and just said to call them back. I had a feeling then. I ended up talking with the doctor (on her cell phone, during her lunch - she did that for me! I'm impressed) about the cancer diagnosis. But I had already pretty much figured it was AdCA stage 1. I teared up a little, but didn't sob or weep. Heck, I don't think I did that until I talked with my husband or parents.

Why did I call and not wait? I wanted to talk to their office when I was ready and prepared. I called during my conference period so I knew I had some time to talk, cry (if need be), do some research, and call my hubby. I didn't want them calling me back during class and being ambushed with the info. I wanted to set the time when I'd find out - so that's why I called.
When it comes to me retelling, it doesn't bother me. It is kind of like a list of details (without emotion attached). I still don't understand how I ended up with cancer. I kind of feel like one day, when I'm explaining it I will understand. That understanding may never come, though. I've about resigned myself to that.

(I hope you know I write, reread a little, and then post without any real proofreading, so I hope and pray this stuff makes sense! ;) LOL)

I have so much faith in you and in you coming through this ok. It is a difficult journey. No one would choose to have to go down it. You are educating yourself (and God bless you for reading my r-e-a-l-l-y long posts! you poor dear!). And I assume that you are researching elsewhere also. I certainly hope you don't take what I say as absolute. What I have to say is just absolutely my view/understanding/opinion/perception on things. I hope you are verifying information.

Anyway, you are in my thoughts and prayers as you go into surgery tomorrow. When I went in for my colpo and ECC I asked God to give my doctor "clear eyes, sure hands, and find whatever she needed to find." I'm a bit afraid to pray that prayer again because of what she *did* find, but I thank God it was found now (at this early of a stage) rather than in a year or two! He DID answer my prayers!!!

Hugs to you!

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