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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!
Hi everyone -- I just figured I'd give a quick update, and pass along some interesting info that I've recently learned. I apologize in advance, since this is probably going to be a long post! I'm going to put a break in it so you can just skip to the part about what they do in a trach, and not read about the other stuff :)

First of all, I went for another opinion at the Neag Cancer Center in Farmington, CT, which is part of the University of Connecticut. Dr. M. B. is a most fantastic lady!!! Aside from having a great background in cancer care and being one of the few docs around that does a trachelectomy, she is a very caring, patient and dedicated doctor. If I wasn't already treating with my doc at Yale (whom she highly recommends!) I would have no qualms about treating with her. So anyone in the New England area looking for a second opinion, do not rule out UConn!! I had a much better experience there than I did with Sloan, and although they're not one of the "big" names you hear, their credentials can rival the other guys.

She also gave me some interesting facts/stats about adenocarcinoma, which I had not come across before. First, she told me that most adenos are the result of HPV 18. I have been completely freaked out by reading all of the terrible things that HPV 16 can do (such as throat/oral cancers). So, I intend to have my pathology tested so I can find out exactly which strain(s) of HPV I have, and hopefully I won't also have 16!! (PS - docs don't seem to be much concerned with what strain you have, and consequently I've been told that insurance may not pay for this testing). Since learning about this adeno/HPV 18 connection, I cannot figure out why DNA testing to determine which strain isn't a normal part of the screening, precisely so that those of us with 18 can be checked more thoroughly for adeno, which tends to hide....but that's another lecture for another day.

I've also been told that adenocarcinoma tends to NOT spread to the lymph nodes as quickly as other cervical cancers, especially when caught early. Positive nodes could screw up my whole plan for trachelectomy and children, so this has been a big concern of mine.

There is also a theory out there that surgery (including a cone biopsy) actually helps the body fight off the HPV that caused the problem in the first place with adenos!! Obviously we are all afraid of recurrence, and especially since I'm going to lose most of my cervix with surgery, I am concerned about the HPV then attacking the vaginal wall, et cetera, and my seeming inability to fight off HPV is a concern. So, I am hoping that this theory is true!!

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So, at this point I am scheduled for trachelectomy surgery on 2/25. This is how the procedure has been described to me. Since Yale doesn't consider Sentinel node mapping standard of care right now, my doc is agreeing to use the dye and do the mapping to make sure he gets those nodes (since I do believe in it, and I specifically asked for it)...but then he's going to take a few more, as that's his way of doing it. In total he's going to take 15-20 (instead of the usual 40 or so), for a variety of reasons. They will test the nodes while I'm still under, and as long as they are clear, he will continue with the trachelectomy. For a variety of personal reasons, we have agreed that he will do the trach, and not test the margins on that while I'm under (generally they will send a frozen section to pathology to quickly check for a clean margin; if it's clean, they close you up; if not, they proceed to a hysterectomy). So, the downside is I will have to wait about a week after surgery to get the final pathology on my trach...which will be one tough week. But personally, I could not accept going under and not knowing what would happen. I asked why he couldn't still send a frozen section to path so that I'd have an answer when I come to, but he said that if the margin was close, the freezing process would damage the edge of the tissue so making a call on the margin might be compromised....so I will just have to wait, and hope that my margins are nice and clean and clear. Incidentally, I'd have to wait that long anyway, since they further dissect the nodes after surgery, so you are not really "all clear" until that final report anyway.

I was also told that the surgery should be about 2-2 1/2 hours (Sloan told me 4, but they do it abdominally). My doc is doing is laparoscopically, with a robot assist, so I'll have five scars -- two on each side of the pelvis, about two inches in from the hip bone, and then another between that area and the belly button, and then one inside the belly button (he usually does it about an inch and a half above the BB, but he looked at me and said he'd do it inside to hide it, and would even put it on the under side so my belly button ring would hide it!!). The scars will range from 8 to 15 mm, so they are really small!! It's truly amazing how they can do all this. I'm going in at 7:30 a.m., and should be going home the next day, although he said I'll be on a catheter anywhere from a few days to six weeks...which didn't thrill me. Depending on how I'm doing, I will either have to self cath until I don't need it anymore (which he said should get me off it sooner), or they'll send me home fully catheterized, and they'll recheck me at my two week check up post-op....so we'll have to see how that goes.

So now I need to stay calm, and stop imagining the worst. I'm so afraid they'll find something else and say I need more surgery, or radiation, or both....I feel like all of this has happened so fast, and things got bad very quickly. So now I'm just hoping that my bad news is over, and this is my road to full recovery -- with uterus and kids in my future!!

Sorry this is such a long post....

Hugs to all, and Happy Valentine's Day!!
That is such interesting information, Zoe. I figured certain strains of HPV caused adeno vs. squamous cancer, but had never heard one way or the other. And trust me, I've searched various times since last April. I look forward to reading more about it later on (as the word becomes more available).

I didn't realize you would have to have a catheter for so long after the trach. Why is that? With the lap/hyst you don't need it that long. Do you know what this needs it for a longer period? Just curious.

[QUOTE=zoe96;3885499]
So now I need to stay calm, and stop imagining the worst. I'm so afraid they'll find something else and say I need more surgery, or radiation, or both....I feel like all of this has happened so fast, and things got bad very quickly. So now I'm just hoping that my bad news is over, and this is my road to full recovery -- with uterus and kids in my future!!
[/QUOTE]


Spend the next week or so cleaning your house and getting your life situated so that you have an easy time of it when you come home. How long will you be off of work?

If you are going to have restrictions on bending, stooping, and lifting I strongly suggest you get one of the GopherIt/GrabIT thingies they sell for people who can't pick things up from the floor easily. I bought a great one at Walgreens after my hyst for about $10. I loooove it! I don't need it to pick up stuff from the floor but it sure comes in handy getting things that fall between the washer/dryer and the wall! ;)

(((hugs to you and the other ladies))))
Yikes, I went to put in a return and ended up posting my accident!

Thanks for all the tips on the cath....my cousin was a nursing student, and she told me much the same as Jess. She also said it's not that big a deal, and that I'll be fine. Since I have no choice, I'm sure I will be!!

Pickle -- yes, taking the parametrial fat and losing all that tissue is not thrilling me. All I can think of is what if heaven forbid there's a recurrence, where would it spread to if there's not a lot of surrounding tissue? Hopefully I'm worrying about that for nothing, because I don't want any recurrence in my future, that's for sure! I am going to talk to my doc about it though, and see if it's possible to have less taken....although I suspect I'll lose on that argument! But, you don't get if you don't ask, so I figure it's worth a shot :)

Boneysgirl, so sorry to hear you had so much trouble after the cone!! I was amazed that I really didn't bleed, at all....am I'm hoping that I have as relatively easy a recovery from this surgery as I did from the cone.

I plan to take it very easy, and keep in mind that just because there aren't scars on the outside doesn't mean my insides haven't been put through hell. And since I want them to heal nicely, I need to be nice to myself! I have a bunch of stuff on my DVR that I plan to watch, plus I have a library full of books that I haven't had time for...so I plan to catch up on my reading! I will also be mindful of the sitting, because now that Pickle mentions it, prolonged sitting has been a bit uncomfortable, and seeing as what they're going to do, it would make sense that that kind of pressure is not a good idea. So, laying down and relaxing is on my agenda post-op!!!

I really am grateful I've found such a supportive place with such great ladies to help keep me grounded!!!





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