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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

Hi 7588 --

Sorry I didn't jump in sooner but I've been swamped at work lately.

First off, I agree with everything Pickle and Lily have said. Going to a gyn/onc, while it sounds serious and scary (and is), is the best thing for you, not only because of the glandular involvement but because of the DES. I *believe* that DES is actually linked to some of the rarest forms of cervical cancer, either clear cell or neuroendocrine (those are like 1-3% of all cc). The other two types are squamous cells and adenocarcinoma, to which AIS is a precursor. A lot of reports and physicians will say that adenos are "rare," and you'll see a lot of stats saying they compromise only 5-10% of all cc. According to my oncologist at Yale, adenos are on the rise percentage-wise in areas where there is good screening and healthcare, and the actual number is closer to 30% -- reason being that squamous problems are much easier to detect with regular and adequate screening, so those cases are getting picked up before they become invasive cancer.

In any event, AIS, while sometimes referred to as Stage 0 cancer, is not actually cancer -- so don't be so quick to label yourself as having been diagnosed with :) You are still a long way off. EDITED: (I meant to address this to ccfighter -- sorry!)

As for the fertility issues, even with early invasive cervical cancer you can usually have your fertility spared by having what's called a trachelectomy, either radical or simple. By definition, a trach is a cervix removal, although it's a bit of a misnomer as they don't actually remove the whole thing, and leave about 5-10mm. A simple trach takes just the cervical tissue, and is basically like a very large CKC (cold knife cone); people who have had multiple LEEPs/CKCs sometimes also end up with the functional equivalent of a simple trach. A radical trach takes the cervical tissue and the top 1cm or so of vagina, which is resected to the bottom of the uterus (it sounds much worse than it is). With either procedure, a permanent cerclage is also placed so as to sustain a pregnancy, although delivery would have to be by C-section. The important thing is that the uterus remains intact. There is an increased risk of miscarriage and second trimester loss, about 25%, and close monitoring is required. Bedrest may also be required. BUT, for invasive cancer or recurrent high grade dysplasia, a trach is an alternative to a hyst and will leave you with the ability to bear children. The recurrence rates for trachs and hysts are the same, so it is no less safe to have this procedure. Radical trachs are generally only offered to women who desire to retain fertility and who are Stage Ib1 or lower (simple trachs can be used when there is only micro invasive, Stage 1a1, sometimes early 1a2 or recurrent dysplasia). Depending on your stage, you may also have a lymph node dissection to rule out lymph node metastasis.

I was diagnosed this January with Stage 1a2/1b1 adenocarcinoma, at age 39 (no children YET), after 20+ years of normal paps. I was diagnosed with hr hpv in May 2008 and told to return in a year for follow up (my pap at that time was normal except for the hpv), and "luckily" I had a problem in Nov that led rather quickly to my diagnosis. I had a radical trach and minimal lymph node dissection 2/25/09. Thankfully I had no residual disease (my CKC of 1/15/09 actually had gotten everything, although they couldn't be sure because my margins were so close), and my lymph nodes were all clear. I had the procedure laparoscopically and vaginally, so I only had a few tiny cuts, and my recovery has been rather uneventful. I just had my first official follow up last week, and got the great news Monday that my pap is all clear. My onc told me to go try and get pregnant next month -- so that's the plan :) They normally like you to wait six months to a year, but given that I just turned 40 he told me to get moving, not because of the cancer, but because I'm getting up there age wise!

ccfighter, I had a couple of responses but I think you might have your own thread started? Plus this response has gotten way too long. I will add another response later if I can't find an appropriate place to direct my questions to you!

In any event, 7588, I hope I've made you feel a little better that at long last the US is catching up to other places and making great strides in retaining fertility in women with cc. And like Lily said, glandular problems suck. Keep us posted on what's going on!!!

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