I was diagnosed with high risk HPV back in 2005 and was seen regularly every 3-6 months for routine paps as some would come back normal and others would come back with low risk dysplasia. I had a few colposcopies done with biopsies and all would come back normal. At one point, my gyn did an ECC because of atypical endocervical glandular cells present on one of my pap results, but the ECC results showed "fragments of benign endocervix" .... that was about 2 years ago. My two paps this past year were normal, then the one in January 2009 came back "atypical endocervical dysplasia - favor neoplastic process" and since I am a full time student, the student health center was so upset about the result that they sent me to this gyn-oncologist, scaring me to death that I had cancer.
So.... I saw him twice now. He's ordered a bunch of tests, a pelvic/transvag US, an endometrial/uterine biopsy, another colposcopy and a few more biopsies... Just saw him on Tuesday and he tells me that the results definitely show adenocarcinoma in situ and that I need a cone biopsy. There were two methods he said he might use and wanted to wait till the results of the uterine biopsy came back to determine what method he'd use.
I don't even know what my questions are at this point.... but I think I just need a place to vent and I'm sorry that it's here, but I don't know where else to do it!
I am full of anger right now - that this crept upon me like it did. I hate that I thought I was finally free of getting abnormal results, thought my immune system was working against it, that it had "cleared up on its own" as it's sometimes known to do. Angry that I have the GLANDULAR cell abnormality, not the endocervical ones - easier to treat.... Angry toward men in general!!!! Feel like I've been punished for having sex, while they have no consequences like this to deal with at all - just go around infecting other unsuspecting women... I'm so tired of all these invasive procedures, scared that this will affect my ability to conceive one day and carry a child... Scared of having to explain all this to a prospective partner (I'm single right now...) and having him understand and not feel like I'm scarred (literally!) or damaged goods..
All that aside - is there anything I should ask this oncologist before I go ahead with this procedure? Can some of you tell me what the procedure is actually like? Will I need to stay off my feet for a few days? Have others had any trouble conceiving? Scar tissue issues?
To top all of this off, I'm starting a brand new job on June 8th and just had to tell my supervisor that I will need time to take off right away to have this procedure done... Nice first impression, right?
I'm sorry to hear about your diagnosis. I can really identify with all of your anger - I think those of us in this situation have all been there. I think one of the worst things about having HPV/abnormal cervical cells is that you feel like you can never be 100% sure of anything! My pap results come back every which way so how can you trust it when you finally get a "normal" result that you are actually normal? I don't know. I understand your frustration though. I think I will be on edge for the rest of my life in this regard, even after I finally get a few "normals" under my belt (hasn't happened yet).
There are a few ladies on this board dealing with atypical glandular cells that hopefully will be by to answer your questions specific to that. I just wanted to post a note to say hang in there!
I totally feel your pain! I seriously have anger issues with men and our sexist society in general. Seriously, my boyfriend and I were watching Harry Potter today, and I couldn't stop ranting about all the sexism in it!!! If there was something that was relatively harmless is women, but often caused PENIS CANCER in men, you'd be sure that all us women would be getting tested for it!
AIS completely sucks, but you've come to the right place. There are a bunch of us here with it. While you probably do need a cold knife cone, it is completely manageable.
I was supposed to start a new job on Jan. 5, but I had to have it pushed back to the 12th because I had a LEEP on the 5th. Then I was diagnosed with AIS on Jan 20 and had to ask for time off again!! Everyone was really understanding. So unbelievably accommodating. I think everyone has either been through health issues themselves, or had a family member go through them. Pretty much everyone just told me to worry about getting better and they even told me to let them know if they were giving me to much work.
The damaged feeling definitely sucks, too. I don't like getting pieces cut out of me!!! But for me I think of it as removing a little to save the rest and that helps. As far as having kids, chances are this will not affect your ability. And even if it looks like your cervix won't stay shut, they sew it shut, which is very simple and effective! And as for explaining the HPV issue, I look forward to it as an education!! Most men don't realize that *hello* they already have it.
You SHOULD see the gyn/onc. That was the right call for glandular cell changes. I hope you continue seeing the gyn/onc. It's not that you really need an oncologist, it's just that regular gynos generally know very little about glandular cell changes. My gyno scared the crap out of me, acting like AIS was the worst thing EVER. Then I saw the gyn/onc, and he almost made me feel like I was wasting him time because AIS is so not a big deal compared to what he usually treats.
I'm so glad you got this diagnosis . . . obviously not that this happened to you, but that now that you know you can get it treated and you will be okay. The surgery helps most women to fight off the HPV, so hopefully you can get this treated and then you will be fine for forever!! That's my plan!
Hi Jaylite, I saw your post a few days ago, and thought I replied to it. I see I didn't, so I will now.
I'm glad you kept up with your follow up paps and that your doctor did the ECC. I'm also glad the student health center sent you to the gyn/onc. The gyn/onc is specially trained to follow and care for the AIS. You have an expert on your side.
As far as what surgeries he might do, I would think it would either be a LEEP or a Cold Knife Cone (CKC). For the LEEP, he might choose to do a Top Hat LEEP, but I'd think he'd be more interested in getting deeper into the canal than a top hat would sample. Since you have AIS, I'd think the doctor would opt for the CKC. It seems most gyn/oncs choose it over the LEEP in cases of AIS or other types of glandular involvement. It preserves the edges of the sample for a better biopsy. The doctor can finish off the CKC with the tool that he/she uses for a LEEP to singe the edges of the cervix to reduce bleeding and increase healing. time.
Have you scheduled this next biopsy yet?
I know you are afraid, and that is understandable. There are several things that the doctor can do to maintain your fertility, at least for a time, to allow you to start your family. Just a few years ago the only option was a hysterectomy. I think doctors are not as quick to that option as they use to be.
The ladies here have already given you great advice, and the only thing I would add is that if given the choice, I'd choose the CKC rather than a LEEP, so they can get cleaner margins on you. The major difference, besides the manner of taking the sample and the resulting edges, is a LEEP you are awake for and a CKC you are under general anesthesia. I had a CKC in January '09, and really it was not bad at all.
As for the fertility stuff, Lily is right; the chances of problems with conception/carrying a pregnancy to term are rather small, I think something like 2-4%. Also, I know this is really scary stuff, but even if things are a bit more problematic there are fertility sparing treatments available. I was diagnosed with Stage 1A2/1B1 cervical cancer in January after a CKC, and had a radical trachelectomy (cervix removal only) rather than a hysterectomy, so I can still have children. I'm not saying this to scare you, but rather to let you know that even with my situation and surgery, my chances for successful pregnancy are pretty good. They say with my procedure there is about a 25% increase in the risk of preterm labor/second trimester loss, but that's much better than the 0% fertility I'd have had with a hyst.
If you have questions or concerns, you've definitely come to the right place, and we are all here to help you out and support you!! Please check back with us to let us know how you are doing. We are all usually pretty responsive and check in frequently
Last edited by zoe96; 06-10-2009 at 04:04 PM.
Thank you SO very much for all of your replies - they truly helped me feel better and put things back into perspective for me.... It's still kind of scary, but definitely manageable I suppose. I see my oncologist again next Tuesday the 9th to discuss the slides and determine how deep the abnormality goes and from there I guess he'll determine what type of surgery. It's definitely a CKC, but it seems like there are 2 types of CKC's...? Not really sure, he was talking very quickly but I'll find out and keep you all posted.
And yes, Lily - about the new job - my supervisor was very understanding when I told her I needed to have surgery.... so that's a weight off my back! :-) I'll post again next week when I know more.
2 types of CKC?
I'd be interested to know too.
Maybe they use different tools at times? Can't think how they can vary taking a cone shaped piece of a cervix.
Maybe they use different methods of cauterisation?
I'd be interested to know if you find out.
Oh, and keep us posted on here Jaylite. We're all in more or less the same boat and can offer you all the support we can. Just remember we're here for you.
My doctor just called me yesterday regarding the results of my last colposcopy and uterine/endometrial biopsy and he said that the abnormalities are not as bad as he thought, which is a very good thing! I still have to have the CKC but I will be getting the lesser of the two surgeries. He told me that if I were older, he would opt for taking a much larger specimen, but since I wanted to preserve my fertility as much as possible he will do the more conservative one and then take it from there - as in there might be a possibility that I will need another one down the line at some point... I see him on Tuesday to schedule the surgery and I will ask about the other CKC option... Talk soon!!
Hi everyone.... just had my other visit today with the doctor. So - it seems like the two procedures he was going back and forth with was the regular CKC and the trachelectomy. He's going with the CKC to see how invasive it is and then possibly more later after those results come back. Hopefully this will be enough. He seemed confident that risks were not that bad, but there were some nevertheless. I also had a lesion on my labia (totally unknown to me) that he biopsied and that came back abnormal as well so he said he would have to excise further to prevent further spreading....
He also told me that the CKC would involve cutting away the entire surface of the cervix, which I was shocked about. I thought it would be just a small area around the cervical os, going deeper into the canal - so this is alot more invasive than I thought... He said I'd be OK to go back to work in 2 days. I'm on my feet ALOT where I work - can anyone offer me any advice as to how they felt afterward? Is 2 days enough of a recuperation period?
I'm scheduled for surgery on June 29th. Thanks for all your support though this...
Jalite, I'm pleased and surprised your doctor was considering the trach. A lot of doctors are not yet offering that. I assume they haven't been trained in the procedure yet.
When it comes to recovery post CKC, let me tell you what I did.
I had my CKC on a Friday. I was there by 5:30 am and home by 11:30am. I slept most of that day, got up for dinner, surfed the web for about 30 minutes, then slept some more. I rested and watched movies and read on Saturday. Sunday, I went to the grocery store with hubby. He pushed the cart and carried groceries. I was a bit tired when I got home. On Monday I went to school (I teach middle school). I know I felt a little crampy, but not as bad as some periods (but I haven't had BAD cramps in years and years). I went to bed early that night and for the next few nights. I probably could have gone to work on Sunday, but alas, school isn't in session on Sundays! :grin:
If you are on your feet a lot, then you might see if you can get an extra day off for recovery before being up so much. Also, talk with your doctor's office for their recommendation. My doctor told me not to push anything heavy or lift anything heavy for several weeks (3-4?).
I know, after my CKC I had a discharge for about 7-10 days. It wasn't a lot. Just enough to need a light pad.
I'm really glad things seem to be going well! I had absolutely no problems with the CKC. I could have gone back to work the next day. I felt absolutely fine. Before leaving the hosptial, the nurse advised to keep taking my pain meds no matter whether I was in pain or not. She said once you're in pain, it can be hard to stop it. So I kept on the Percoset and ibuprofen every 4 hours.
I took off 2 days after my cone, so a total of 3 days. It wasn't necessary, but it was nice to rest. I told my work 2 days, but that I might need more. Things are different for different people. Is there any way that you can tell your work that you will definitely be out 2 days, and there is a chance you may need to call in sick for the 3rd or 4th?
I feel like I'm raining on your parade, but I feel like I have to write this: Reading your post, I am a bit concerned for you. Your doctor just seems to be treating things so radically! Don't get me wrong you probably should have a cold knife cone, and the trachelectomy is a great option, but it's usually reserved for invasive cancer. It's surprising to me he was even comtemplating it. Part of the point of doing the CKC is to determine if a trachelectomy is necessary. My gyno and I discussed trachelectomy as a fertility sparing option IF my CKC came back showing invasive cancer. What is you exact diagnosis again?
Yes, the CKC does remove the entire "tranformation zone" on the surface of the cervix, so I don't necessarily think he's being too radical about the CKC. But doctors do have discretion with how much they want to remove. Did he say how deep he would go and why he made that decision? That's definitely what I would be asking!
I'm generally annoyed by doctors now. Before my LEEP, my gyno told me how much cervix is removed is "physician's choice." It didn't occur to me until after surgery that I really should have called her out on that statement. The treatment is not "physician's choice," it should be the patient's! She should have explained the benefits and risks of be agressive or conservative and let ME choose. Anyway, I just really want to make sure that you are on the same page as your doctor as to what risks you want to take.
Still, any doctor that does a trachelectomy gets a little gold star from me! I'm not saying he's not the right person for you, I just think if I was in your position, I'd be asking some more questions.
I am with Lily on her last post all the way. I was also surprised that your doc talked to you about a trach until I looked at your location...I suspect perhaps you went to Sloan-Kettering? They have great docs, and were one of the first places in New England to start doing them -- but I find them to be super aggressive in their treatments, so if that's where you went, I'm not surprised they talked about the trach.
As for the CKC, I also had a very easy time with it. I was in and out of the hospital in a few hours, went home and rested, got a great night's sleep as a result of the anesthesia from earlier, and then took it easy the next day, which was a Friday. I went to the movies on Sunday and back to work on Tuesday (Monday was a holiday)....and that was it. I had yucky watery discharge for about a week and a half or so, but aside from that I was fine. I also had a D&C at the same time to check out what was going on.
As for how much they take during the procedures, Lily is right that there is a great variance in what is taken, and that it depends greatly on how aggressive your doctor wants/feels he/she needs to be. I had a CKC and only had 6mm removed; I know of others who have had LEEPs with 11mm removed.
Thanks again for your responses, everyone. I guess I'll be OK to return to work by Wednesday or so.... Lily and Zoe, thanks for your concern about my doctor being too aggressive. He is at NY Downtown, not Sloan Kettering and his practice is split between gynecologic oncology and dealing with infertility issues, so I trust that he knows what he's doing and has my best interest in mind since I want to preserve my fertility as much as possible. I think he mentioned the trach because he just seems very thorough and doesn't want to surprise me should that option be required. He told me about the trach right after I had the uterine biopsy (before we got the results back) so I guess he was preparing me in case there showed greater signs of abnormality than I actually have. STILL - I am aware that I won't know for sure until after i get the results of the cone biopsy, so hopefully everything will be OK. I forget how deep he said he was going to go, but I did question him about it, asking how he knew how far to cut, was it just an arbitrary point.... and he said something like he is best able to gauge from past cone biopsies he's performed what the appropriate amount to remove is. I still am kind of upset by the fact that the whole surface of the cervix will be removed, though... I thought it was only around the canal where the ACIS was located... but I do remember him saying that it was only a few millimeters that he was taking away from that surface.
My surgery is on the 29th so I will keep you posted as to how I made out. Thanks again for everything!