Newly diagnosed - AIS - pre-cold knife & pre-op questions

I am 49 years old, no kids (had the Essure procedure 3 years ago), still having regular periods with no menopausal symptoms, and have had a history of normal paps (I have always gotten paps every 1 to 3 years my whole life). I don't have any irregular or abnormal bleeding, etc.

In January this year (2009), my routine pap showed atypical glandular cells (undetermined significance) - my first abnormal pap. My gyn did an ECC and that came back normal (fragments of benigh endocervical mucosa. no evidence of dysplasia is noted).

So, we decided to do a follow up pap in 6 months in July. That pap also came back with the same AGUS results. This time he did HPV, transvaginal ultrasound, endometrial biopsy, and ECC. My HPV test was negative for high and low risk. He also did a pelvic ultrasound and transvaginal ultrasound, both which did not show any issues. The ultrasound showed no issues and average uterus/endo thickness. HPV was negative low and high risk. Endometrium biopsy suggested benighn polyps, wth no evidence of hyperplasia or malignancy. But this time, the ECC show atypical gladular epithelium, cannot exclude endocervical glandual dysplasia.

So to be safe, he did a LEEP last week on 17 Aug, and that came back as adenocarcinma in situ (AIS). The margin was clear on the endocervic xample, but on the ectocervix sample, it extended to the cauterized margin.

Because I'm 49, my gyn recommended a hysterectomy, but referred me immediately to a gyn onc. I was able to see her quickly this week. She said she agrees on the hyst, but wants to do a cold knife cone first to determine best type of hyst to perform - total or radical (she will also do ECC and colposcopy at same time). So she has schedule the cold knife for next Fri, 4 Sep, and then a counseling session on 17 Sep (after cone results) to determine next steps. She said the hyst would be done about 5 to 6 weeks after the cone.

So I got adjusted to the AIS, but I keep reading, and now I'm scared of what if more is found during the cone. The internet is wonderful, but at the same time, it can drive you crazy with all the what ifs, especially when you don't have everything (the full situation) in hand.

So I've started reading on hysts, surgical menopause, etc. She did say that even if she did a simple/total hyst, she would recommend removing ovaries because there is so much unknown about AIS.

Right now, I just want to get it all out (I have no emotional attachment).

Sorry for making this so long . .. sometimes, I think I am still in shock (even my gyn was).

Any advice on what to do pre-cold knife in the next week and during the 5-6 week period before the hyst? After my session on the 17th, I'll share more info regarding final diagnosis to get any ideas/feedback on how best to prepare, recover, etc. I just joined this site in the past few days and have been reading a lot. It's really wonderful.

Thanks for listening!

I'm trying to figure out how to edit my post

Hey hon, you only have about 10 minutes after posting to go back and edit, otherwise you have to post a response to exaplain things.

Yes, the internet is a wonderful source of information. At the same time I can't help but wonder how many people its sent "over the deep end".

I went into surgical (or treatment enduced) menopause. The effects drove me a bit batty, but my doc put me on HRT and its worked very well so far.

Scene -



For your pre-op questions you can go to the Hysterectomy Checkpoints link at the top left of the page. It has information on questions to ask the doctors and how to prepare for the surgery. Also you can go to the pre-op page and it has resources and articles as well.

Good luck as you research and gather information.



G.

The cold knife cone procedure is typically not a big deal. I was terrified beforehand, and then afterward I wondered what all the fuss was about (referring to physical pain, not stress, ha ha)

For preop, there was really no recommendation given to me, other than nothing to eat or drink past midnight. I did have some preop bloodwork drawn in the office prior to surgery. I arrived at the hospital early in the morning. Very early. They placed an IV in my arm to give me medications, took my vital signs, confirmed I had signed my consent forms. They put some "happy medicine" in my IV before taking me back for surgery and I remember NOTHING until I woke up in the recovery room. I was not in any pain. I was told the surgery took 20 or 30 minutes.

They released me a couple of hours after surgery, and I was given a prescription for pain medication, as well as 800mg Ibuprofen. The ibuprofen was all I needed for pain. The little bit of pain I had, felt like menstrual cramps. I was warned that there might be a lot of bleeding, but I had ZERO bleeding until I got my period 10 days or so later. There was a little bit of weird discharge/ tiny bits of the absorbable stitches coming out a few weeks later....part of the normal healing process. The complications I was warned about were heavy bleeding and infection, and thankfully I had neither.

I had restrictions after the surgery....no tampons and no sex for 4 weeks....no heavy lifting for a few days. I returned to work (medium intensity job on my feet all day) a few days later. I received the results several days after surgery.

So, that is it for the cold knife cone. I realize you have the hyst looming after that, but hopefully this helps alleviate nerves about the smaller procedure.

Karen

	Quote:
Originally Posted by scene I am 49 years old, no kids (had the Essure procedure 3 years ago), still having regular periods with no menopausal symptoms, and have had a history of normal paps (I have always gotten paps every 1 to 3 years my whole life). I don't have any irregular or abnormal bleeding, etc. In January this year (2009), my routine pap showed atypical glandular cells (undetermined significance) - my first abnormal pap. My gyn did an ECC and that came back normal (fragments of benigh endocervical mucosa. no evidence of dysplasia is noted). So, we decided to do a follow up pap in 6 months in July. That pap also came back with the same AGUS results. This time he did HPV, transvaginal ultrasound, endometrial biopsy, and ECC. My HPV test was negative for high and low risk. He also did a pelvic ultrasound and transvaginal ultrasound, both which did not show any issues. The ultrasound showed no issues and average uterus/endo thickness. HPV was negative low and high risk. Endometrium biopsy suggested benighn polyps, wth no evidence of hyperplasia or malignancy. But this time, the ECC show atypical gladular epithelium, cannot exclude endocervical glandual dysplasia. So to be safe, he did a LEEP last week on 17 Aug, and that came back as adenocarcinma in situ (AIS). The margin was clear on the endocervic xample, but on the ectocervix sample, it extended to the cauterized margin. Because I'm 49, my gyn recommended a hysterectomy, but referred me immediately to a gyn onc. I was able to see her quickly this week. She said she agrees on the hyst, but wants to do a cold knife cone first to determine best type of hyst to perform - total or radical (she will also do ECC and colposcopy at same time). So she has schedule the cold knife for next Fri, 4 Sep, and then a counseling session on 17 Sep (after cone results) to determine next steps. She said the hyst would be done about 5 to 6 weeks after the cone. So I got adjusted to the AIS, but I keep reading, and now I'm scared of what if more is found during the cone. The internet is wonderful, but at the same time, it can drive you crazy with all the what ifs, especially when you don't have everything (the full situation) in hand. So I've started reading on hysts, surgical menopause, etc. She did say that even if she did a simple/total hyst, she would recommend removing ovaries because there is so much unknown about AIS. Right now, I just want to get it all out (I have no emotional attachment). Sorry for making this so long . .. sometimes, I think I am still in shock (even my gyn was). Any advice on what to do pre-cold knife in the next week and during the 5-6 week period before the hyst? After my session on the 17th, I'll share more info regarding final diagnosis to get any ideas/feedback on how best to prepare, recover, etc. I just joined this site in the past few days and have been reading a lot. It's really wonderful. Thanks for listening!

I'm 54 and had a modified radical hysterectomy for cervical cancer two days ago. We are waiting for pathology reports, but everything indicates all is normal thank God. I did keep my ovaries!!

Thanks! I did have the cold knife yesterday, and you're right, it wasn't bad. I feel fine this morning (just a little abdominal bloating/tenderness and scratchy throat), but will make sure I rest so as not to bust a switch or cause any bleeding, as well as to allow my body to focus on healing itself as the gyn onc said she removed a lot of tissue.

Anesthesia today is amazing. I think I was most scared of that. As soon as I was in the operating room, I was out. And I woke up in recovery wide awake, ready to go.

So now it is waiting time .. . . hoping the margins are all clear so that will be a total hyst instead of radical. My consult session is set for the 17th for results, plan for next steps.

So I'll be working on getting all my hyst questions together.

To close this one out, I did get my results back on Thursday, 17 Sep. And they were the best I could hope for at this point. First, the pathology results for the cold knife cone (and ECC and colposcopy that were done again at that time) were all benign. No residual AIS was found in any of the tissue samples. So this really was caught early. It means the LEEP got the AIS. Thank goodness my regular gyn decided to do the LEEP "to be safe" rather than telling me to come back in 6 months for another pap.

My gyn onc has scheduled a Davinci hysterectomy on Wed morning, 7 Oct. So it's time to get ready for that!

That's very good news. That's basically the news I got after my mod radical hysterectomy. I just want to let you know that the Davinci is wonderful and recovery fast. My pain was minimal and mostly gone after a week other than being sore to touch. At two weeks I am pretty much back to my regular activities and have my strength back. Best of all, my swelling has all gone down and all of my clothes fit! I wish you the best with your Davinci too and I'm happy they also caught yours early.

Thanks! I'm glad your news was good too! And thanks for the feedback on the Davinci. That is helpful!