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zoe96 01-11-2009 08:05 AM

adenocarcinoma in situ -- cone biopsy
I've read a lot of posts here, but either didn't read enough or just missed the answer to these questions. History-wise, I am 39 and have always had a yearly PAP. I tested positive for HR-HPV for the first time this April, and my doctor at the time told me this was nothing to worry about and that they would just monitor me more closely, but she did nothing else. She also told me that by watching me, they would be able to catch any bad cells before they ever developed into cancer, and that in her 15 or so years of practice she'd only seen 2 or 3 cases, and they were people who did not have regular Paps.

Well, I ended up at a new practice this November because of a possible miscarriage (I wasn't even sure if I was pregnant, as I have a history of very irregular periods for my whole life). As a result of that exam my Pap showed HPV and also abnormal cells, so he did a colposcopy. I just learned Friday that I have adenomcarcinoma in situ and he wants to do a cone biopsy right away. I was scheduled to be out of the country for the next two weeks and he told me to cancel my trip. I at first scheduled it for the day I come back, but have changed my mind and am going to have the cone this week.

My first question is this: since he is doing this cone partly diagnostic to see how far it's advanced, am I correct that there's a real possibility that the only reason I have the "precancer" diagnosis is because he doesn't know the extent of this? I am also nervous by his insistence that I have the cone right away, and that waiting two weeks is not a good idea. From other people's posts, it seems as though scheduling the cone a month out is not unusual, so I'm wondering if the fact that he wants to move so quickly is a bad sign.

I'm also confused about exactly how good the chances are that this is "in situ" and nothing more, as opposed to "in situ" for now because they don't know until they do the cone, but that chances are it is already invasive (I guess what I'm asking is, is it common for it to remain or actually only be in situ, and not be invasive, or is this just the doctor's sugar coating way of easing you into the concept that you have invasive cancer). I've seen several posts from a senior member here whose lesion was just a matter of 1.2mm by 1mm, and that was enough to warrant a diagnosis of Stage 1A1 -- which scares the heck out of me. That's pretty small. I am 39 and do not yet have children -- we were actually just about to start trying -- so while the prognosis for 1A1 seems to be good, I do not want a hysterectomy. While doing my colposcopy my doctor had said what he saw looked good, so I'm thinking that meant he only saw a small spot....but now this diagnosis, and the fear that it's breached the cervical wall. I was too upset to ask many questions the other day, but have learned a lot in the past couple days. Another thing I can't find an answer to is exactly how much room is there between being "in situ" and breaching the cervical wall? Are we talking less than 1mm, or do you have maybe 3-4mm before you are in trouble?

I have a million more questions, and apologize for the length of this post. I was completely unprepared for this, since my first doctor had told me I would never be able to get to this point if I was monitored, and my second doctor had said he didn't think it was anything to worry about and there was only a 1 in 1000 chance of having a problem. Now not only do I have a problem, but I have the typically more aggressive of the two (glandular), and it's advanced to the point that they are worried it's already invasive. I cannot understand how this could have happened, but after reading posts here, it seems to be much more common than the doctors will admit.

Thanks so much for any input, and best of luck to everyone here.

Pickle Eyes 01-11-2009 08:48 AM

Re: adenocarcinoma in situ -- cone biopsy
Hi Zoe! I'm so sad to hear of your diagnosis. Every time I see Adenocarcinoma in a thread title a chill goes up my spine. You've probably been reading my posts, since I was diagnosed with adenocarcinoma Ia1 and have given the measurements of my 2 lesions.

Please know that my diagnosis with cancer was VERY rare. My regular doctor said she still looks at my file and shakes her head in disbelief that I had cancer. I vividly remember my appointment with her and her telling me all of the steps there were between my diagnosis of high risk HPV and it being cancer. Well, I skipped over most of the diagnostic steps and went from hrHPV to adenocarcinoma in situ to AdCAIa1. I am a very rare case. I know that, but I keep telling my story so women are aware of what the pap can and can't do for women and the importance of looking for answers until there is a solution or understanding.

It is possible that the cone biopsy will remove all of your lesions and that it will be sufficient treatment. My concern is that since glandular lesions grow differently than squamous cell lesions, the doctors will be more aggressive (understandably) in treatment options.

IF, after the cone biopsy the doctor says you need further treatment, and he/she suggests a hysterectomy, you might ask about a trachelectomy. It is the surgical removal of just the cervix. That surgery preserves the ability to conceive and carry a pregnancy. The baby is then usually delivered via C section. Make sure you let your doctor know you wish to maintain fertility.

Do you know what your biopsy/pathology report says from your colposcopy? Did your doctor also do an ECC? If this new doctor said everything looked good on the colpo, I'm wondering why he is going straight for the cone biopsy. I suspect he did an ECC.

Do you know if you are having a LEEP or a cold knife cone biopsy?

Doctors are usually more aggressive in dealing with adenocarcinoma (and insitu) because of the nature of adenocarcinoma (how it grows, the speed, the location, etc). This is probably why your doctor is insistant on not wasting time. I don't know that your doctors speed in dealing with this is a bad sign. I think it shows that he is consciencious (that spelling doesn't look right) and wants to take care of things as early as possible. That's how you want this handled.

I would say the chances of it being in situ are very good. It is rare (I've seen 1/1000 numbers before) when it has actually progressed to cancer. I've also been told that it is even rarer (1/10,000 or more) for a woman who has had regular and good paps to actually develop cancer.

I can't remember how thick the wall is between the outer layer of the cervix and the "base". It is considered cancer only when this base/floor is breached. I saw a diagram of the cellular involvement, but I can't remember where I saw it. I found it by doing an online search for cervical cancer. I think the image was part of a page, but it is possible I saw the diagram under an image search. I'm sorry I can't give you more directions in how to find images on the invasions of cervical cancer.

When it comes to how common adenocarcinoma is . . . something like 90% of cervical cancer diagnoses are for squamous cell cancer. That leaves on ly 10% as glandular cell. I commented to my gyn/onc about how rare AdCA was and she said, "it isn't really that rare, and it is usually found the same way yours is." Especially in earlier stages.

I'm sure you've read my story in other threads, so I'll assume you know some of this. I think one reason my regular doctor went ahead and sent me to the gyn for the colpo was because it was a little thought in the back of her head that it could be this. I also think the gyn did the ECC because the colpo looked good (no visible lesions) and AdCA was in the back of her mind. I don't know that either doctor had a conscious thought of it being this, but I think because of their education and training this was a possibility. Either that or it was the hand of God guiding their thoughts, words, and hands. Which ever it was (and if it a combination) I'm glad my doctors did things they way they did so the cancer could be caught so early!

It is time for me to post this. I started reading your post 5 minutes after you posted it, so I'd like to get some information to you. I'm sure I'll think of more later. I'm not doing a full proofreading on this, so I hope it makes sense. (EGADS this is long!!!) lol

(((((hugs))))) and good luck!

Ktspirit4 01-12-2009 03:34 AM

Re: adenocarcinoma in situ -- cone biopsy
I might suggest you not at all wait in getting a diagnosis and treatment plan + 2nd and 3rd opinions with a gyno/oncologist. My story is long and I will not trouble you with the details of it now. (Pickle Eyes on here is wonderful w/info ) By the way I'm back Pickle from the UK and will post an update on my niece soon.. G/luck and were here to support you along . Kt

zoe96 01-12-2009 03:43 AM

Re: adenocarcinoma in situ -- cone biopsy
Hi there -- thanks sooo much for responding to me. I was hoping you would see this thread, since I have read many of your posts and know your story from them. You sound very, very much like what's happening to me (except, no offense, I hope I get a less serious diagnosis than you did). I am still in disbelief over even my in situ diagnosis, since my previous doctor (who I'd been seeing for probably eight years or more, and who until now I trusted) had said that they would be able to catch any damaged cells long before I ever could get to the stage of developing cancer, yet here I am. I am terrified that this has already progressed beyond a Stage 0 and is no longer in situ. I am having a cold knife cone biopsy, hopefully in the next day or so.

Your post has calmed me down a bit, and thanks so much for all the info. I am hoping you are right, and that my new doctor's haste in scheduling this procedure shows that he is cautious and diligent, and not necessarily that he suspects something worse. He found this by doing the colposcopy and an ECC, and what frightens me is he said that there were bad cells right to the edge of the sample he took during those procedures, so no hint of a clear margin. He did try to reassure me with the "maybe I just missed the edge and it doesn't go much further," but after his whole "gee, everything looks good" during the colpo and there's very little risk of anything serious speech, only to be given this diagnosis, I'm not taking solace in anything he says. I don't understand how I seem to have completely skipped all the preliminary stages and ended up here. And had it not been for my problem in November, I would not have scheduled an OB/GYN appointment until my annual in April, and then who knows how bad off I would have been. So while I was super upset over what I thought was happening in November, I guess it was a blessing, since it led to an earlier discovery of this.

Through my research this weekend I did hear of the trachelectomy, and am definitely going to keep that in the back of my mind should I get more bad news and he says I need more surgery. Even though I'm now not sure on children (and I know I have to hurry up, at 39!!), I would like to leave myself that option. I also live near a hospital that practices cyber knife procedures, and am hopeful that maybe that would be an option as well, should this test yield a more advanced diagnosis. I know I should be thinking positive and that my margins on the cone will be clear, but I am afraid to be so optimistic, since up to now I treated this all as something that would work out fine, and like you, I can vividly remember sitting across from my doctor and hearing him say cancel your trip, and that he nearly fell off his chair when he say the pathology report from the colpo and ECC (granted it was three days ago, but you know what I mean).

I have not read my actual lab reports yet, and am going to ask for them today. I wasn't in the right frame of mind on Friday, but now want to get my hands on everything myself. Plus I am very lucky that a long time friend of mine works for a nearby cancer center, and she told me to get my records to her and one of her doctors will look them over and give me a call to add his two cents. I am wondering if it is prudent to seek out an oncologist even if (hopefully WHEN) I get clear margins on the cone. I just don't trust that something won't be missed, especially since I've read that the glandular cancers can "skip" and therefore yield a clean margin and leave bad cells just beyond. That concept has me terrified, as does recurrence...but I guess I'm getting ahead of myself.

I guess right now the only thing I can do is get myself in for the cone ASAP and see what my diagnosis is from that. I am just praying that it remains an in situ diagnosis, and that he can get everything with this procedure. I keep wavering between thinking this will all be okay, and crying my eyes out because I'm afraid it has become invasive.

Anyway, this turned out much too long, so my apologies....obviously I'm distraught and being rather redundant. Thank you so much for your input, and hopefully I will have some good news to report very soon.

zoe96 01-12-2009 10:24 AM

Re: adenocarcinoma in situ -- cone biopsy
Hi Kt -- I didn't see your post when I put up my last message. Thanks so much for your support! I have my surgery scheduled for Thursday and postponed my trip, despite my disappointment and having to disrupt the plans of others. I just want this taken care of and want some more answers!!

I actually got a copy of my colpo and pap reports, as well as the results of an ultrasound I just had, and actually feel much better. My doctor didn't do a very good job of explaining exactly what was going on with me, and I think I misunderstood something he said. He told me that I had diseased cells into the third layer of cells before the cervical wall and that he's doing the cone biopsy to see if the adenocarcinoma has breached the cervical wall. I assumed that the levels he was talking about were going upwards, towards the uterus, and that the ECC showed diseased cells. Turns out the ECC revealed nothing but benign cells (which I'm taking as a good sign), so now I'm wondering what exactly is this cervical wall. I'm thinking now he means outward?? Apparently I had two lesions, one at 1 o'clock that was under under 1mm by 1mm, and one at 4 o'clock that was about 1mm by 1mm (perhaps slightly smaller). So I'm wondering, just how much room is there mm wise?? And how thick is the cervical wall? My doctor is out today, and will hopefully be able to call me back first thing tomorrow morning. I know Pickle had said her lesion was just over a mm, so the fact that hers was considered invasive is scaring me (as is this whole thing!!).

Sorry for the multiple posts....I'm just terrified that this has become invasive and that I'm looking at more than just the cone. I desperately still want to be able to have children (and want to keep all my parts!!)

Thanks so much for your kind words and support.

Pickle Eyes 01-12-2009 06:03 PM

Re: adenocarcinoma in situ -- cone biopsy
I don't understand how I seem to have completely skipped all the preliminary stages and ended up here.

I TOTALLY know how you feel. I still feel floored that I had no problems, good paps, etc and yet I had cancer. :shaking head: I don't understand it. I *am* glad, however it was found, treated, and is gone.

I don't take any offense at you hoping your diagnosis is better than mine. I hope that for you, too!

*I* think, because we are talking adenocarcinoma in situ it is wise for you to seek a second opinion of a gyn/onc. Even if you like what your doctor says (regarding the results of the cone). The gyn/onc looks at this kind of stuff every day. Ob/gyns deal with babies and pregnancies every day. I advise you get an expert's (on gyecological cancers) opinion. That isn't any disrespect to your doctor. I think it is a prudent move.

When I was awaiting my results from my ECC, I had the sense that it was more than CINIII. When I knew it was adenocarcinoma in situ and I was awaiting the results from my cone, I had the sense that it was stage Ia and not as advanced as IIa. I was right. It ended up being Ia1. I am not usually good at guessing at stuff, but I was surprised at how close I was during my research.

A dime is 1 mm thick. The cervical wall is under the surface skin. Kind of like how you get a scrape that just takes off a little bit of skin, but doesn't actually bleed. That is going down into the thickness of the skin, in toward the "body". Does that makes sense. The outer cervix, which is seen and sampled during a pap is the exocervix. There is a transition zone between the exocervix and the endocervix. The endocervix is further up the canal, toward the uterus. The only non-surgical way to sample the tissue in the endocervical canal (also called the cervical os) is the ECC. I don't remember the distance between the outer skin (epithelial cells) and the cervical wall. I just searched online and can't find a diagram, much less typical measurements. It isn't very thick, though.

I'd better go. I've been interrupted several times while writing this. I highly suggest you take a written list of questions when you go to the doctor. Leave room to write your answers. It'll help you "remember". (Ok, *I* need help remembering, so I make the suggestion for that reason. ;) ).

Take care and write back! ((((hugs)))) You are in my thoughts and prayers!

zoe96 01-12-2009 10:31 PM

Re: adenocarcinoma in situ -- cone biopsy
Hi again, and much thanks, Pickle!!

Thanks for the explanation on the cervical wall, although (no offense) that all still has me confused. If you don't mind me asking, was your Ia1 diagnosis a result of the findings of your ECC? I have my pathology report from the colpo, and the ECC results from that are that they only found benign cells in that entire sample -- which I am taking as a good thing, and I would have thought it was also a sign that this has not breached some wall or become invasive. But obviously my doctor has this report as well, so that's what was making me wonder if he meant he was looking for invasivon going outwards, not upwards (since my upwards is clear). I'm hopefully speaking to him in the morning, and am hoping he can tell me exactly how close to the "wall" he was when he took my samples, since the report just says he took samples from 1 and 4 o' was he right up to the wall (he only took 1mm or less for each), or was he already a mm or two away when he took these samples??'s all so confusing, and unless you really do your homework and have the ability to digest a lot of medical jargon, you (generic you) can so easily become lost and at the mercy of someone else's interpretation.

Thanks for the suggestion on the list of questions, but I'm already there. I've got two pages of them ready to hurl at my doc tomorrow morning, foremost among them exactly what makes him suspect invasion (if he even does), or is he being prudent and cautious along with removing the diseased cells before they become a problem.

I have also read a lot about these glandular cells "skipping", so that has me worried that I can have clean margins, yet they still missed something.

After this procedure on Thursday I plan on contacting a gyn/oncologist to follow up, even with a diagnosis that will hopefully remain in situ only, with no invasion, because I want to make sure that that is an expert's opinion as well, as well as what I can do to carefully and closely monitor for recurrence and any other problems. I do have the good luck to have a good friend who is a radiologist at a cancer center (maybe I already posted this) and she took my pathology reports to one of her doctors there, who looked them over for me. When I spoke to him, he said at this point I don't need an oncologist, and hopefully I never will, but that he'd be happy to be over any and all lab/pathology reports that I have. He seemed pretty optimistic to me on the phone, although he admitted his speciality is not gyn cancers. But both he and another dr. at the center looked at my stuff, and agreed that I do not yet need an oncological referral.

And let's hope I never officially do, although I well one out anyway.

Pickle, thanks soooo much for keeping up with this thread and being so kind to me. I will keep you posted. All I want now is to have clean margins and no invasion.....

Pickle Eyes 01-13-2009 05:49 PM

Re: adenocarcinoma in situ -- cone biopsy
I'll back up and give (hopefully) an abbreviated version of my last 13 months. Prior to that I had 26 years of annual, good paps.

December (07), annual pap and doc offered HPV/DNA test. I said ok.
January (08) I got the results: good pap, but positive for high risk HPV.
January (still) 2 appointments with the doctor to discuss hrHPV. Originally she said we'd wait and retest in 3, 4 or 6 months (don't remember how many). After my 2nd appointment she said she would go ahead and send me for the colposcopy.
March (misunderstanding about if my 1st appt with the gyn was a consult or the colpo, I had to reschedule in March) colposcopy. While doing the colpo she didn't take any biopsies because there was nothing on the exocervix to biopsy. "Just to check" she did the ECC to check the cervical os/endocervical canal.
March 21 results from ECC was adenocarcinoma in situ
April 4 cold knife cone bipsy, another ECC, a D&C, and an endometrial biopsy
April 11 I called the doctor's office to get pathology report. Doctor called back. ECC, D&C, and endo biopsy were fine. CKC came back adenocarcinoma Ia1. The lesion was 1.2mm across and 1mm deep.
April 18th I was sitting in the gyn/oncologoist's office listening to my treatment/surgical options
June 18 another cold knife cone biopsy to determine if my hyst could be done as we hoped/plan/expected (looking to see if there were more lesions and how large/deep they were)
June 19 returned to the hospital for my LAVH to remove just my cervix and uterus
My CKC on June 18 removed one more lesion (about 1mm across and 1mm deep).
The cervix and uterus contained "no sign of residual tumor" - - - no more cancer.

I don't know why the ECC didn't detect the AdCA at stage Ia1. I don't know if it is because the tissue sample didn't have any lesions that had breached the cervical wall (however thick that is) or if it is because the ECC can't sample that deep.

Let me give you a little bit of simple cervix, uterus, vagina biology. This description is courtesy of my best friend who is a lamaze teacher.

Think of a pear sitting in a tall thin glass. The narrow end of the pear is in the glass, the large end is outside (and above) the glass. You have pulled the stem from the pear. The glass is your vagina. The pear is your cervix and uterus. The cervix is part of the uterus, it is just the narrower, bottom end. The cervical os is like the hole where the stem use to be.

Now. Let's talk just the cervix. This is how *I* imagine/picture the cervix. Think of a frosted donut (but you are holding it so the frosted end is facing down - don't let go or it'll get ruined! ;) LOL - sorry, I got distracted hahaha). The pap scrapes the exocervix - that's where the frosting is. The doctor usually aims to get cells from the TZ (transition zone) that is a little further into the donut hole, but they can't always get very far in there. The colposcopy is similar to the pap, in that the doctor can't see much beyond the TZ. The doctor looks at the exocervix under magnification (3 different powers, I think). Sometimes the doctor will take a pinch/punch biopsy of the exocervix (the frosting). If the doctor has reason to suspect there is a problem further in the cervical canal (that's the donut hole), then he/she can do an ECC to scrape the canal, way down in the donut hole where you can't really see. (At that point, my image goes to a bagle since a bagel has a smaller hole than a donut).

Ok, I'm silly and think of strange analogies, but it all makes a lot of sense to me.

Now, the cervical wall, I guess the best way to describe that is if you peel off that frosting from the donut, the donut underneath is the cervical wall. You know how a candy-sprinkle is on the frosting, but doesn't get down into the donut itself? Well, these lesions are usually caught while they are still part of the frosting. Since we are actually talking about lesions, they CAN grow down into the donut instead of just staying in the frosting, but they are seen in the frosting, but they just go deeper into the donut itself.

Does THAT makes sense? That's the first time I've tried explaining the cervical wall. So I hope it makes sense.

We could think of the cervical wall as being like the skin of that pear. A blemish on the pear might just be on the skin, but it could go deeper into the pear. Again, we’d be talking about a blemish in the little hole where the stem use to be. When the doctor does the ECC, he/she is scraping in that little hole. When the doctor does a LEEP or CKC, then he/she is cutting into the pear (or donut) and making the hole larger.

When it comes to the oncologist, I’ve read (and agree) that if a woman has severe dysplasia (CIN II) or higher (including insitu), then it is prudent to seek the advice of a gyn/onc. He/she might just verify what the gyn says, but I think it is best to check. ESPECIALLY since we are talking adenocarcinoma and its sneaky ways. Then, if additional surgery (beyond the first cone/leep) is needed, I strongly suggest the gyn/onc do it. He/she knows what to look for if things are not as good as hoped/expected. He/she is best trained in what to do to make sure a bad situation is handled so it causes the least problems later. (like if a lesion is larger/deeper than expected or if pelvic wash (during a hyst) contains cancer cells), etc.

I wish you the absolute best when you go to the doctor. I hope he answers all of your questions and makes you more comfortable in understanding your diagnosis. You are in my thoughts and prayers. Please write back and let us know how your appointment goes!

I’m sorry for talking your ear off! I hope this post isn’t too long to post in one post! Yikes! ;)

zoe96 01-14-2009 06:01 AM

Re: adenocarcinoma in situ -- cone biopsy
Dear Pickle --

THAT was one awesome explanation!!! Thank you so much. My doctor did not even come close to giving me an idea of exactly what we are talking about.

I was mildly more optimistic after talking to my doctor yesterday, but hey, he was optimistic after the colp and well, we see where that went. I was thinking that my ECC being clear was a good thing, but now am not so sure. I also don't have much faith in the CKC now, since your second one showed another lesion that they didn't get the first time. My doctor said he is going to take a little larger sample than he normally does, just to make sure, and that he's going to cauterize to hopefully get anything on the edge, just in case I'm unlucky enough not to have clean margins.

Pickle, thanks so much for sharing your history. I'm sure you've done it before, and it can't be a pleasant recitation, but it helped me understand immensely.

I guess maybe I'm more talking out loud than asking a question, but I don't understand how your CKC came back adenocarcinoma Ia1 if your ECC was clear. That is scaring the heck out of me, because in my case, it was the two punch biopsies on the surface that have come back AIS, but my ECC is clear. I was thinking that was a good sign. I've heard that this thing can jump, but I hadn't heard of having a clean surface (for lack of a better word), yet having AIS in the ECC. So now I'm worried that maybe my ECC was clear only because he took it from a good spot, and that that doesn't necessarily mean I'm clear everywhere.

I'm also concerned that your first CKC left behind a lesion, especially since it was your ECC that showed the original AIS diagnosis, so I would think that they would've gone pretty deep (and therefore not been able to leave a lesion behind). It's also scary because I'm sure your doctor through s/he got it all, yet this thing was lurking there still. So now I'm scared that even if he tells me all looks good, there'll be no way for him to find a lesion that may be higher up -- and as we know, the higher up they are, the worse it is.

Despite your awesome explanation, I am confused on one point. If I'm understanding correctly, then the tissue from the ECC is located ABOVE what they consider to be the cervical wall? If I'm correct on that point, then even having a clean ECC (which at this point I do) doesn't mean that my AIS hasn't already breached the cervical wall, and therefore by definition become invasive. This whole thing is incredibly scary.

One last question/comment. I am very concerned with preserving fertility, so obviously the thought of a hysterectomy is stressing me out. Is there some reason why after your second CKC they went right to a hysterectomy? I know you said it was done in preparation for your surgery, but if your pathology from what they took in the hyst showed no signs of cancer, doesn't that mean that essentially the second CKC got it all (and therefore you didn't absolutely need the hyst)? I don't mean to say that in a way that makes you feel bad or criticizes....I am just wondering whether if I get bad news, a second CKC may still be able to help me, even if I have a more grace diagnosis than AIS.

Thanks so much for letting me put all this out there, and like I said, I'm more thinking out loud. Thanks even more for sharing your story, and for being soooo supportive. I have my surgery tomorrow (1/15) at 1 p.m. Hopefully all will go well, and my doctor will be calling me with good news very soon. Unfortunately he takes the position that he will not call with bad news, he just sets up an appointment. So basically if he doesn't call me before my scheduled appointment, that means bad news. How he thinks that's better than just calling me in as soon as he receives the results, I don't know. For me, I'd rather know ASAP and not wait for a scheduled appointment, no matter what the result is.

I think next week I will consult with an gyn oncologist, and hope that it turns out that I don't need one. But, I don't trust anyone or anything with this, and want as many opinions as I can get. I also am going to push to get a PET scan after all of this, even if I have to pay for it myself.

I will keep you posted on what's going on. Thanks for all your good thoughts and prayers; I could use them right now. And Pickle, you are the best!!!

zoe96 01-14-2009 06:43 AM

Re: adenocarcinoma in situ -- cone biopsy
Sorry for the multiple posts, but I thought of one more thing I don't understand. If samples from the ECC are ABOVE the cervical wall, then I don't understand how that in itself is not considered invasive? Pickle, you had said that your original ECC diagnosed you as AIS. The explanation by my doctor was that in situ meant it was not invasive (and I understand that's a preliminary diagnosis until they actually go in there and do a more invasive biopsy), and that what they want to make sure is that it has not become invasive. So I guess I don't understand how you had *only* (and you know I don't mean to trivilize that diagnosis) AIS from the ECC, but were not already at that point diagnosed as adenocarcinoma Ia1. Or maybe I'm just not understanding all of this well, despite the awesome explanation. (Or maybe I'm just too stressed to be making any sense). It seems like every time I find something to take as a good sign that they caught this in time to treat me and rid me of these terrible cells, I find five more things that suggest my outcome will not be what I'm hoping for....

Drafly 01-14-2009 12:29 PM

Re: adenocarcinoma in situ -- cone biopsy

The top layer of skin is called the epidermis.This is what lines the "wall" of the cervix. Below the dermis is a layer called the basal layer. It is when the pre-cancerous cells breach or go down throug the basal layer by which the distinction is made as to in situ or invasive. Beneath the basal layer are all the access to blood vessels which can spread the disease thus considering it invasive. Thus is the difference between the wall or outer lining of the cervix which is composed of epidermis. I hope this helps.

Pickle Eyes 01-14-2009 07:23 PM

Re: adenocarcinoma in situ -- cone biopsy
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. <think-think-think> 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!

Pickle Eyes 01-14-2009 07:35 PM

Re: adenocarcinoma in situ -- cone biopsy
I'm going to try one more time on the cervical wall being different from further up in the cervical canal.

The outer layer (and dragonfly says) is epithelia or skin layers. That's like the skin of the pear. You can every so slightly poke the skin of the pear and it doesn't puncture the skin. That is like the AIS. It hasn't gone beyond the skin. The AIS hasn't gone beyond the cell wall. AdCA is when that poke (or blemish on the fruit) goes through the skin and into the fruit. It has passed the fruit's skin (or the cervical wall into the cervix). Does that help?

I don't understand how/why the ECC only diagnosed the AIS. I'm wondering how/why it took the cone. It could be location (further up in the canal) or if the ECC isn't able to detect the lesion that has gone that deep (beyond the cervical wall).

You know, you might be at the point of needing to take a break from reading stuff online. I didn't stop reading, but man did I become very picky about what I read. When I was going through diagnosis, I read about all kinds of gynecological cancers. Then I cut back to just cervical cancer. Because squamous cell cancer acts differently (in some ways) than adenocarcinoma, I stopped reading about carcinoma and read just about AdCA.

I think many/most women who are going through this diagnosis go through similar feelings and actions. We read everything we can get our hands on. We become overwhelmed. We second guess. We worry, fret, and make everything worst case scenario. Then, we decide to cut back on reading (or stop reading all together for a time period). It seems it is a fairly common progression on research. I certainly don't want you to go away. I am enjoying talking with you, but I also understand if all of this is just driving you bonkers. I totally understand!

Ok, I think that is all for tonight! ((((hugs and prayers to you)))) Take some deep breaths, think relaxing thoughts. Surround yourself with people and things you love (and who love you) if you can. And focus on healing. And . . . if/when you feel like it, come back and let us know how you are doing. ((((more hugs))))

zoe96 01-15-2009 05:21 AM

Re: adenocarcinoma in situ -- cone biopsy
You know, you might be at the point of needing to take a break from reading stuff online.

I think many/most women who are going through this diagnosis go through similar feelings and actions. We read everything we can get our hands on. We become overwhelmed. We second guess. We worry, fret, and make everything worst case scenario. Then, we decide to cut back on reading (or stop reading all together for a time period). It seems it is a fairly common progression on research.

Pickle -- once again, thanks for your awesome posts, and your amusing explanations, which make perfect sense!!! Thanks too, Dragonfly!!

I am so there regarding what you posted above. I have read and read, and while the initial info was very informative and exactly what I needed to know, aside from this board (and I'm even limiting that) I'm not reading much else. Everyone else's horror story, and the possibility of what if, what if, what if is/was driving me nuts. I had to take a step back and say wait, that's not me (yet), and hopefully never will be. I have AIS -- contained and treatable until told otherwise, and I have no reason to suspect otherwise. So as much as I don't like this diagnosis, hopefully that is the only one I will ever have (and after today, it will be past tense, as my doctor gets this all out of me with the cone).

I have a friend who practices Reiki (I don't know much about it, but apparently she's a master/super high level practitioner) and she worked on me last night, to calm me down for my surgery today and to give me some positive energy. I was very calm last night, and even got a good night's sleep. I was already feeling *cautiously* optimistic before I saw her, and she really helped me gain more confidence that I will be okay, and that this is just a bump in the road of my life. If I really admit it, although I wasn't terribly worried after the colpo, I do remember distinctly stopping when he said oh, don't worry, there's only a 1 in 1000 chance that there'll be a problem.....and I immediately had a bad feeling. Heck, I play the lottery and think I have a good chance of winning that; and those odds are way less than 1 in 1000. This time, however, I feel much more confident that this will resolve my problem, and hopefully two weeks from now -- or hopefully less!! -- I will be thinking back at how upset I got, when really I was okay.

I am definitely going to try to get my good news ASAP, and keep bugging my doctor's office about the report. If they get sick of me, so be it. It's a new practice for me, and if I have to switch to another one after this, then fine, although I'm sure I'm not the worst patient they've ever had. I also plan to visit with an oncologist, even *when* I get my clean margin/non invasion report, so I can make sure that this time I am followed up properly. I'm so lucky to live in an area with some really superior medical care, and even luckier to have friends connected to the medical field who are very willing to help me out. I only wish I'd sought their help sooner, instead of trying to deal with this on my own.

Pickel, I cannot thank you enough for all the explanations, kind words and support (and thanks to the other ladies that have contributed!!). I hope that in addition to helping me, your great info helps some other ladies either understand their situation, or know to keep a close eye on themselves and their doctors. I hope to report soon -- very soon, some good news on my condition. I will not just disappear!! I've seen a lot of posts here where there is no follow up, good or bad....and I think it's important to give an end to the story so people can be reassured. So, Pickle, I hope to be able to write my happy ending (to this scary chapter of my life) very soon, and then I intend to stick around this board so maybe one day I can help someone, like you have helped me and so many others. Although obviously I am hoping for a cleaner bill of health than you received after your cone, I would like to come back and report that I got clean margins and am cancer free....

And please, don't even apologize for the length of your posts....have you noticed the length of mine? I'm an English major....we just can't help ourselves in the wordy department!!!

Thanks again....

Pickle Eyes 01-15-2009 05:39 PM

Re: adenocarcinoma in situ -- cone biopsy
I hope you are recovering well! (I don't expect to see you for a day or two until you are feeling better and are up and about). Take good care of yourself and let yourself be pampered! Your body gets one chance to heal!

I have tried various forms of alternative medicine, for various reasons. I think, at a minimum, if it helps us stay focused and think positively, then it is good. If the alt med serves more purpose than that, then that is a bonus. All of that being said, there are several forms of alt med that I believe strongly in. Others, are just ok. I've had someone do Reiki (or was it some other very light touch/no touch form of energy medicine?) once. It was ok.

I just wanted to say that I read somewhere that the chances of having cervical cancer was 1/1000, but having adenocarcinoma was more like 1/10,000, so that makes your statistics even better! LOL

I *did* tell my doctor's office, starting on day 3 post-procedure, "I plan on calling once a day until I get news, ok?" Maybe I didn't say "OK", maybe I just said, "Just so you know." They never complained. But I felt it was polite to give them the heads-up on how frequently I planned to call.

I hope you do hang around. It is good to see online friends posting! :)

[QUOTE=zoe96;3850084] I have AIS -- contained and treatable until told otherwise, and I have no reason to suspect otherwise. So as much as I don't like this diagnosis, hopefully that is the only one I will ever have (and after today, it will be past tense, as my doctor gets this all out of me with the cone). [/quote]

AMEN! I know a lady online who has always said, "never waste a good worry." And a good worry doesn't start until the doctor tells you to worry!

I'm going to eat dinner now. Hubby cooked! Yay!!
(((((hugs))))) to you!

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