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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

Hi ladies --

I will try to answer the questions that I can. The one thing I do know is there definitely IS an alternative to hysterectomy, even for early cervical cancers (including invasive cancers caught early enough). It's called a trachelectomy, and is a cervix removal only. If you *only* has dysplasia or AIS, you are definitely a candidate for this! But, if you have AIS, a cone biopsy with clean margins is generally considered the only treatment you need. Definitely go to a gyn/onc!

Also, at one of my recent appointments with my third opinion gyn/onc, she told me that most times the surgery (she was talking about a cone) not only gets all the cancer/precancer, but also helps the body to build an immunity to the HPV that caused it in the first place. Now, she was discussing my case, which is adenocarcinoma, so I don't know if that also applies to squamous cell problems, but since the discussion here is AIS, I thought this was good to pass on.

I know exactly how you both feel....and then some, since unfortunately mine wasn't caught until it was invasive. Having a list of questions is definitely a good idea, but don't be disappointed if most of them go unanswered, most notably "how long did this take to develop"....I doubt anyone would be able to give you an answer, because they generally just don't know.

The ECC is a great diagnostic tool, and I don't want to scare anyone, but it's not infallible; my ECC w/my colpo was totally clean, and when I had my cone one month later, it showed 5mm of invasion. ECC is great, but they only take a very thin if you have a very small lesion, it's hit or miss whether they take a sample that actually hits that spot. I don't mean to scare anyone, but since you asked the question, I felt I needed to share.

I can't give you an exact statistic, but paps are not that reliable for picking up adenocarcinoma, since it starts higher up. I had clean paps for 20 years, then was told I had HR HPV in 5/08 (w/no abnormal cells), and in Jan '09 was diagnosed with minimally invasive adenocarcinoma. In May of last year my old gyn (I changed practices since) told me to return in a year. "Luckily" I had a different problem and ended up having a pap in November which caught this. My point is, I had a clean pap (aside from the HPV) in May, and from the level of invasion that I have, I already had this at that time, but the pap didn't catch it.

Now for some more upbeat news: if your pathology is showing AIS, and clean margins, then you would have to have a recurrence if you were to develop invasive cancer; the clean margin means they've already gotten everything. Adenocarcinomas are known for skip lesions, so you can have clear tissue yet a lesion lurking just beyond -- but if it's still "in situ," it is still considered precancer, so you don't actually have a lesion yet.

I believe that your doc will probably want you to have repeat paps every three months for a year, then every six months for a year or two, then back to annuals, assuming that you are still clear of abnormal cells, and probably clear of the HPV as well. HOWEVER, if you have no abnormal cells but still are testing positive for HR HPV, despite what your gyn says, I would insist on paps every three months. All three of the oncs I've seen have said yep, current protocols call for a pap every year with HR HPV (so that's what most gyn's do), BUT, as oncs, they would do it every three months instead.

Hope some of this helps!!!

((hugs)) to everyone. I know how much this all sucks, and how scary it all is.

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