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Cancer: Cervical & Ovarian Message Board


Cancer: Cervical & Ovarian Board Index


Ugh... I'm back again, ladies!

Just had my 2nd opinion at Sloan Kettering, the doctor was listed on NY Magazine's top docs for gynecologic oncology, specializing in cervical cancer. After examining me and reviewing my records, he recommended a repeat cone. He said it was a 50/50 chance that the abnormalities would be removed with a repeat cone instead of the trachelectomy. Even though it's 50/50, he still seemed more confident with that decision (the repeat cone).

Thing is - my initial cone was very large, I only have a small amount of cervix left (he said my surgeon did an excellent job, that it looked really good, healed nicely - which I was glad to hear!) but he said that there was enough of the cervix left to do a repeat cone.

Now I'm just really confused... my initial doc said hysterectomy is optimal but given my age, vaginal trachelectomy is recommended to preserve fertility. Now this guy thinks repeat cone might work. Any thoughts? I'm opting of course for the repeat cone, but wonder if I'll just have to go back for more.... but I only have ACIS - haven't reached any stages yet... wouldn't repeat cone be enough?

Thanks again for the support - hope you all are well!
Jaylite, in addition to what Pickle Eyes said, I'd also recommend getting a cervical length test because I seem to remember Zoe saying she picked the trach over a repeat cone because a repeat cone might cause complications with a future trach if it (the cone) didn't completely eradicate disease and more tx was required, but I'll let her advise you on that because I don't want to misquote her. (And I am curious, myself.) I believe the length test can be done via endovaginal ultrasound. They can measure the thickness of endometrial lining with an endovaginal ultrasound, so why not the length of a cervix? Ask your doc. I've read the cervix is an average of 2.5cm but it can be as long as 4cm (that seems very long to me) and after reading countless other anecdotal reports, it really is an individual thing how much cervix is left after multiple surgeries.

But before you dive into all this, Jaylite, have you asked for a repeat pap, ECC and hpv test? That would tell you whether repeat surgery is even indicated! I don't want to give false hope but there IS the possibility that although margins were unclear, the cone removed enough of the viral and disease burden to allow your body to clear the rest; read researchprincess's posts for more info. The first cone staged you at AIS with no microinvasive disease, right?

You have options right now, and the more info you have, the better! Good luck.
[QUOTE=brieaukirsch;4067814]Jaylite, in addition to what Pickle Eyes said, I'd also recommend getting a cervical length test because I seem to remember Zoe saying she picked the trach over a repeat cone because a repeat cone might cause complications with a future trach if it (the cone) didn't completely eradicate disease and more tx was required, but I'll let her advise you on that because I don't want to misquote her. (And I am curious, myself.) I believe the length test can be done via endovaginal ultrasound. They can measure the thickness of endometrial lining with an endovaginal ultrasound, so why not the length of a cervix? Ask your doc. I've read the cervix is an average of 2.5cm but it can be as long as 4cm (that seems very long to me) and after reading countless other anecdotal reports, it really is an individual thing how much cervix is left after multiple surgeries.[/QUOTE]

Hi there --

I don't know that a doc is going to do a cervical length test in your case, or that it's indicated. I choose a trach over a repeat cone for two major reasons: first, I had invasive cancer, and all the docs were telling me that the trach was my best option; secondly, there was a miscommunication/misinterpretation of my how much cervix was taken during my first cone. I was under the impression that they'd already taken 2 cm, and that my problem was within 1mm of the deep margin; in reality, my cone was only 6mm deep. But, that's water under the bridge, and ultimately I am not unhappy with my decision.

As for cervical length, stats generally say 2.5 - 4.0cm or more. My trach removed another 3.0cm of cervix (in addition to the 6mm that was already taken), and they estimate that I have anywhere from 5mm to 12mm left.

I think that given you are diagnosed with AIS, and not invasive cancer yet, a repeat cone is a wise option. The cerclage that Pickle is talking about is something that can be done if/when you become pregnant. I had one permanently placed at the time of my trach, but it is also something that can be done as it becomes necessary. Also, there are different types, so it may be prudent to wait until you need one, if it's determined that you'll need one at all :)

As for measuring cervical length, I've had two internal/transvaginal ultrasounds (not related to the adeno problem) since my surgery, and they are able to estimate the length of my cervix from that. But again, in your case they are looking to make sure there is no residual disease, which is way more important than trying to leave a few more millimeters of cervix.

As for having a repeat pap and ECC, given that you didn't have clean margins, I personally wouldn't feel comfortable with that, since the ECC only samples a portion of the canal, and if your problem is located on the other side, it is just too easy to miss something. It's not like they core out your cervix when doing an ECC....the repeat CKC will give you a much better idea. Technically my CKC got all of my cancer, and had I not had further surgery, I would have been fine. BUT, there was absolutely no way to know that without further surgery. So while Brie is right, that an unclean/close margin does not necessary mean there is residual disease, there is no foolproof way to know that short of surgery.

Might I ask, did you see Dr. A-R at Sloan? That's who I saw when I was there. If so, I'm glad to hear that he is leaning towards more conservative treatment, because when I went, he was all too eager to cut!

I think your decision for a repeat cone is a most prudent one! I'm glad the docs are offering it to you as an option :) Please keep us posted and let us know how you are doing.

Brie -- I owe you an email....I've been on vacation!
Hi again -- I was thinking of this post, and forgot to add one more thing! I think what Brie may be talking about as well regarding cervical length and it complicating a trach in regard to my case is this: when originally considering whether I wanted to do the repeat cone, I did ask the only doc that offered it to me if that would then complicate having a trach if it turned out that that's what I needed. She told me that yes, it could make things more difficult because of scar tissue or swelling (since my plan was to have each procedure as close to one another as possible, since I just wanted this addressed!). But, she never said it would make a trach impossible, just potentially more difficult, and perhaps make it so I'd have to have an abdominal rather than vaginal approach.

Hope this clarifies a little bit!
I would never have thought to mention asking for a repeat pap, ECC, and HPV test, but now that Brie mentions it, that's totally the way I would go if I were you.

I remember one of the posters here (srchprincess) had a LEEP with involved margins, and then she went to a new doctor who did a new colposcopy with pap, ECC, and HPV test. Since they were all fine, she said it would be okay to just to follow ups. Now this doctor happened to be Dr. Trimble, who is at Johns Hopkins and testing a theraputic HPV cure! I've now starting see her too, and she really is great. If she thinks it's okay, I think it's okay!

The ECC can be unreliable, but from what I understand, it's pretty darn reliable in detecting invasive cancer, and is when repeated every few months as part of standard follow up, it's good at catching abnormalities before they become invasive.

Of course, it does open up a pretty large number of "what if" scenarios. Like what if the pap and the ECC are fine, but HPV is still postive? Would you still get treatment? What if the ECC is negative, but you have CIN 1 and positive HPV?

Even if everything was negative, you might opt for a repeat cone for peace of mind, but I personally would want another colposcopy before getting a repeat cone.
Not to be argumentative or repeat myself, but I want to share this info to explain my reasoning for not thinking a repeat pap, ECC and hpv test is a safe option -- although I agree in theory it sounds like it should be safe.

My pap in Nov '08 came back as abnormal but did not indicate glandular involvement, and even at my colpo my doctor suspected I had CIN I/II. My hpv test came back as positive but noted a low viral load, so my doc also thought that was a good sign, since I appeared to be clearing the infection.

I had my colpo and ECC in 12/08, which included 2 ectocervical biopsies. It was those two biopsies that came back as AIS (which turned out to be invasive cancer, but the samples were too small to tell the extent at that time), but my ECC came back completely clean. Post my CKC which discovered the early stage yet still invasive cancer, I asked how the heck could I have had a clean ECC....and the answer was the sample simply wasn't from a spot that was infected. So, while I did have invasion to a depth of 5mm, my ECC (which took a 1cm deep sample) did not pick up any of that disease.

Like I said, I'm not saying any of this to be argumentative or to scare anyone, but that is the fact of what happened to me. I was extremely lucky that my doctor took those two biopsies and that they showed what they did. Also, I'm starting to realize that my doc was very conservative with my CKC, as he only took 6mm, and from what most of the other ladies on here have posted, it sounds like many LEEPs and most CKCs are much deeper, so I totally understand the concern about wanting to preserve as much tissue in case there are further problems down the road. I am just more concerned about something residual being missed, and find it very scary that what I had went undetected, and was nearly missed if not for two 1mm biopsies.





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