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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

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!
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! ;)
I've really got to stop posting my updates on multiple threads, so my apologies again. Below is an update on how my appointments at Sloan and Yale went today (I bracketed them off so you won't read it twice -- it's the same as the info in the other thread):

Here's my day: I went to Yale in the morning, and got the good news that my MRI and PET are definitely clean and all looks good. They were running *way* behind, and I had to catch the train to go to Sloan, so my visit was short, but the long and short of it was we discussed the nodes again, and the doc at Yale doesn't really believe in SLN mapping...but told me to go see what I learn from Sloan. I also think I might have misunderstood him the first time, and he takes about 8 or 10, but not all of the pelvic lymph nodes. Also, my guy at Yale does the procedure laproscopically, which is a big plus. Now for my experience at Sloan.

The SLN mapping still takes a few nodes, and like Yale, they scheduled the surgery, take the nodes, check them, then go on to the procedure. What they do that's different from Yale is they inject a blue dye, and then take the nodes that the dye drains to (this is the Sentinel lymph node mapping). The nice thing is that they sometimes will take less, and they dissect that first node that the dye goes to (the Sentinel node) in a different and more thorough way than they do the others. Apparently tradition node removal methods just cut them open and do a quick check, whereas with this they actually dissect it microscopically to really check it out. So, although it does sound better than Yale's method, it's not enough to sway me from what I consider worse than the LN "problem."

The doc at Sloan does this *abdominally* -- at least in my case. Which means he cuts through the abdominal muscle, and healing is much longer. You stay in the hospital three days (as opposed to overnight with Yale, although Yale said they would keep me longer if I wanted to), and you go home with a foley catheter for ten days....I am sticking with Yale, who is supposedly one of the best guys with the laproscope, and that is the procedure I want.

The doc at Sloan also mentioned something about if he didn't get a clean margin on the trach he would do a hysterectomy, although after much discussion that was still up for debate. He said the chances are 70% that I'm fine and there's no more involvement -- but of course that means there's a 30% chance that there is, which scares the heck out of me. This was the first time I heard anything about the possibility that even though my CT, MRI and PET show no tumors, there could still be micro involvement farther up the cervix. He said the edge of my margin from my cone wasn't clean, so that's why that's a possibility -- although I'm fairly certain that my top margin *was* clean, although just barely.

In any event, the doc is super, super nice, but I just got the feeling that since I was there for essentially a second opinion, he wasn't completely familiar with my case -- and I really think he is wrong on my margins from my cone. My doc at Yale is very thorough, and all he has ever mentioned is the nodes, and if he thought there was a chance the margin on the trach wouldn't be clear, I would think I'd have heard of that before today.

In any event, this day turned into another bout of panic and worry, and I feel worse, not better,after my meeting with Sloan. I'm not sure what I'm going to do, although I'm nearly positive I'm sticking with Yale. I had such high hopes for Sloan, but in my case, I felt a little like I was herded through there and was just a number and statistic (granted, they are huge, and there were a ton of people there). I will give them this though: they took me right in, and there was almost no waiting. At Yale you could grow roots waiting for your turn (both times I had to wait 1 1/2 hours), but in general I just felt better leaving Yale than I do now after having left Sloan.


So I am not winning on keeping the nodes, no matter what -- although it was clarified that they don't take them all, usually about eight to ten. And the doc at Sloan said the ones they take are not usually the ones that would cause lymph edema, so that was a good thing.

I am definitely not interested in having an abdominal surgery rather than a laproscopic one, so that's the biggie for me. So now I'm back to worrying that they'll find something wrong with the nodes when they remove them, AND worrying that there is some microscopic involvement farther up the cervical canal, despite having clean CT, MRI and PET scans....I just feel like I'm always going to be looking over my shoulder for something nasty to pop up. Although I guess at this point, it is all up to what they find in the surgery, and I've gotten all the reassurances from testing that I can.

So my plan now is to schedule surgery with Yale, hopefully for the end of February. I still want to clarify some things with my doctor there, but given all my options (or lack thereof), I think this is my best bet. Now I need to keep hoping for no node involvement, and no further evidence of cancerous cells anywhere in the cervix when they do the trachelectomy....

Will keep you all posted.

((hugs)) to all.
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!!


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 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 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!!

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