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AIS. What now?! Please advise.

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Old 07-06-2006, 01:29 PM   #1
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Location: San Francisco, CA, United States
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ktbee HB User
AIS. What now?! Please advise.

Hello lovely ladies,

I'm frustrated. I've recently been handed over to a gyn/onc who has a new (thus, not very helpful) assistant/nurse. I called her for the second time yesterday (the first time, she didn't have access to my chart), desperately seeking any info she could give me about what to expect during my next visit. All she can tell me is that my onc will perform a biopsy...that's obvious to me, but this dr. told me (during my first visit with him) that this next biopsy is going to hurt a lot more than anything I've experienced so far

Quick background:

10/05: first abnormal pap
11/05: colposcopy, HGSIL diagnosis
12/05: cryotherapy, unsuccessful (turns out lesion extended into canal)
5/06: cold-knife cone
6/06: cone results: clear margins! BUT surprise adenocarcinoma in situ diagnosis. Referred to gyn/onc...attempted to perform biopsy, but cervix wasn't healed.

My cone follow-up with gyno revealed that I have cervical stenosis (not that big of a deal, right?) and when he examined me it hurt more than I can explain.

So, I go to see the oncologist next Saturday. What do you all think he's going to do?...d&c? How will my cervix dialate if it's scarred shut? Last visit, he said something about wanting to scrape my uterus? But again, how is he supposed to get up there? And why won't his nurse tell me what's going on?? Shouldn't she have SOME sort of info on my chart? Why won't she tell me ANYthing! I would simply like to mentally prepare myself. I understand she's new, and trust me - I normally have sympathy for those in her position, but I'm just really freaked out...and I'm growing more frustrated as it feels like I have no control over anything.

So, if any of you ladies could offer me some sort of IDEA of what I might be walking into, I would greatly appreciate it.

Thank you in advance!

Last edited by ktbee; 07-17-2006 at 04:24 PM.

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Old 07-06-2006, 04:08 PM   #2
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Timber HB UserTimber HB User
Re: AIS. What now?! Please advise.

Huh... that nurse sounds exceptionally unhelpful. Geez. Maybe you could get your doctor to call you back and ask him your questions.

As for the stenosis question, try this: Make a loose fist with your hand. You can easily insert a pencil through your curled fingers from one side of your fist to the other. Now make a tight fist. You could still stick a pencil in there, it would just take more effort. That's like stenosis. They can still dilate your cervix, they'll just have to work a little harder because scar tissue is tougher. In fact, if you have complete stenosis, that's exactly what they do, so that period blood can flow through it again. They just dilate the tissue open again.

They might freeze your cervix with lidocaine so that you won't feel much.

Old 07-08-2006, 08:00 PM   #3
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ktbee HB User
Re: AIS. What now?! Please advise.

Timber - thank you for your reply. Your explanation of stenosis makes sense. I was pretty worked up when I wrote my last post, but I'm feeling a lot more at ease. It's just difficult for me to deal with not knowing what's happening in my body...I'm sure you and anyone reading this can relate to that. I should have some answers soon enough, though, so I just need to sit tight!!

Take care

Old 07-17-2006, 04:49 PM   #4
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ktbee HB User
Re: AIS. What now?! Please advise.

Do any one happen to be in the San Francisco area?? I need to find myself a new gyn/onc.

Just when I thought my interactions with this nurse couldn't get any worse, she called the day before my appointment to confirm it. I thought I would give it a shot and ask her what I was coming in for (for the third time now) and she told me I would be having a colposcopy. I asked her if that was all, and she said that there was also something else that she couldn't read!? I asked her to try to spell it out...she read back "f,e...I don't know." I asked her if it might be ecc or d&c, and she said it could be either (she didn't know what either meant).

The next day, the morning of my appointment, I received a voicemail; a different nurse told me that they would have to reschedule my appointment because they didn't yet have authorization from my insurance, and I have good reason to believe that they didn't even begin attempting to seek authorization until the day before (when I explained that they would have to make a phone call and that it couldn't be done online). I called back to try to reschedule, left a message and I haven't yet heard back. That was 2 days ago. I made this appointment a month and a half ago and I've been counting the days, anxious to get it over with and get some answers!

At this point, I think I should seek out a different oncologist. I don't have the energy to go through this every 3 months from here on out. He's supposed to be the best in the area, but if he has assistants like this working for him, it really makes me question him for hiring them.

I'm really depressed. I feel like me hands are tied and it's making me crazy. I just want to know if there's anything else inside me. I want answers so I can begin to deal with it and take the next steps. Maybe AIS isn't that big of a deal? Am I overreacting?

Thanks for reading. If anyone has/had AIS, I would really appreciate it if you could share your experience or just tell me anything about it...what did your doctor tell you about it? How is it generally treated? Is hysterectomy surely in my future?


Old 07-17-2006, 06:01 PM   #5
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Teresa1974 HB User
Re: AIS. What now?! Please advise.

I'd say you need a new doc. I bugged my poor doctor no less than three times in one week and she patiently explained everything to me every time. Then she prescibed me Xanax to keep me mellow until the surgery that she bumped up a week earlier than originally planned. She called today with the results of the cone I had Thursday that had clear margins and the suspected AIS turned out to be only moderate on the inside when the lab checked it through...
You can find a good doc is the US (can't speak for anywhere else). When I have had problems with doctors in the past I have actually called my insurance company to complain - the problems were resolved quickly. I have a bad medical history so don't like to wait around for slow or inept medical care.
Get on the website for your insurance and find a few other docs in your group. Call around and explain the situation and see who is most sympathetic and responds quickly to your needs. AIS is not something I would take lightly.

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