AIS or adenocarcinoma in situ

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AIS or adenocarcinoma in situ

by redhead32 on Tue Jan 06, 2009 12:00 AM

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Hi All,

About two weeks ago I was diagnosed with AIS. I went directly to an ob/gyn oncologist and am having a cone/top hat/leep done on Friday. I am 32, newly engaged and would love to have one child soon (I have none thus far), so I am hoping to avoid the hysterectomy at this point. I have a couple of requests from other AIS patients:

1. For those that got negative margins in their leep/cone procedure, did the doctor recommend trying to conceive earlier than later and then having a hysterectomy at the same time? This is an option I am considering.

2. I would love to hear stories of other people having a leep/cold knife done for AIS. I am starting to freak out a bit and would appreciate support.

3. Does it pay to have the HPV test to learn my strain? And if I only have one of the "cancer" strains - I am thinking of doing Gardasil...yes I am past the age studied by the FDA to take it, but there are ongoing studies looking at older patients taking the vaccine. Has anyone done this?

Thanks in advance! And wish me luck!

RE: AIS or adenocarcinoma in situ

by herenow on Thu Jan 08, 2009 12:00 AM

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I'm glad you went directly to a GYN/ONC as soon as you were diagnosed with AIS. You're definitely being very proactive about your health, and I will put out good thoughts for you, for tomorrow. I am perplexed why the doctor didn't choose cold knife cone biopsy, as it's more accurate. Has he given the reasons to you?

If you want to conceive, please talk to the doctor about the best time to do it. If your cervix has not finished healing, the risk of miscarriage is higher. In addition, regardless of when you conceive, please tell the OB/GYN about the cone biopsy so that he or she can measure your cervix and monitor it more closely. The worst-case scenario is you'll require a cervical stitch and bedrest. But a caring OB/GYN wants you to go home with a live baby and will do everything possible to make that happen.

Insofar as hysterectomies are concerned there is something between cone biopsy and hysterectomy. It is the trachelectomy. It removed the cervix but leaves the uterus for fertility purposes. I just left somebody else links, and I'll give these to you, too.

http://www.medterms.com/script/main/art.asp?articlekey=12131

http://www.medscape.com/viewarticle/453234

http://www.medscape.com/viewarticle/558569

http://en.wikipedia.org/wiki/Trachelectomy

A hysterectomy is awfully extreme. But educating yourself by going over all of your lab reports and reading the material you can find online and at the library will help you decide what is best. Your doctor should answer any questions you have, and don't hesitate to bring a list of questions you have and to write down the answers if you're concerned you won't remember.

There are other women on the board who have definitely addressed AIS. Hopefully, they will answer you. If not, there are a couple of groups on Yahoo with women who would be happy to talk to you and to give you encouragement. One is gyn_gals. The other is cervical_dysplasia.

In regards to the HPV DNA test, I wholeheartedly recommend it. I have been singing the praises of Roche's AMPLICOR. It will tell you which strain(s) you have, which will help you so much in planning a strategy for protecting your health. I had it done, and it made all the difference in the world to me. Something to bear in mind is that insurance companies don't like to pay for it. So, your doctor may not have it. Or the doctor may have it but can't offer it unless you ask for it. Or you may have to go to a teaching hospital. Or you can check Quest Diagnostics or another lab to see which HPV DNA tests they offer and if you can order it and have it sent to your doctor. If your insurance won't pay for it, you can always discuss setting up a monthly payment installment plan with the financial department.

I'm wary of Gardasil, right now. One of my doctors went to an OB/GYN convention in 2007. He said he learned the vaccine may actually accelerate dysplasia in women who have HPV. I have been hunting for the information he got because I'd like to see the studies. Merck stands to gain a lot of money from this, so if the studies are not being released, this is no surprise. But so far, two women on this board got the vaccine and then developed dysplasia a month later. At the very least, it won't help you if you have already been exposed. However, I do respect your right to make your own choices. The important part is that they are informed.

I'll keep you in my thoughts, for tomorrow!

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