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Adenocarcinoma In Situ Adenocarcinoma In Situ

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Unread 10-29-2009, 05:14 PM
Adenocarcinoma In Situ

Hi all. I have been reading posts on various HysterSister forums for a while now and finally decided to join. I was diagnosed with AIS on September 21st and am waiting for my cone biopsy on November 12th. I am very anxious to get it done and get those results in my hand to find out what is next. I am seeing a gyn onc.

I've had cancer once before, thyroid cancer diagnosed in April 2003 and this November was to be 5 years cancer free (is there a temper tantrum emoticon?). This new diagnosis has come as quite a shock and I am still having a hard time swallowing it. I've never had an abnormal pap, including the one with the punch biopsy I had that diagnosed this. I had a punch biopsy because I've had normal looking polyps on my cervix for the last couple years and the gyn at this appointment didn't see them but wanted to do a biopsy "just in case"...I am glad he did, because this diagnosis could have been much worse.

My previous cancer was supposed to be "easy" to treat, but I had 3 surgeries in 18 months to get cancer free, 2 more to get suspicious lymph nodes (all okay tho), a reconstructive surgery, and 3 radioactive iodine treatments...not so easy to treat. Because of this I am a bit skeptical of being told AIS is highly treatable! Not to mention my gut is telling me otherwise...something that was never wrong with my first journey through cancer.

My gyn told me that I should have a hysterectomy once I am done bearing children. The gyn onc won't even talk about past the cone biopsy...which I get, but is frustrating because I want my hands on all the info I can get! I am curious of many AIS-ers out there have had a hysterectomy and when? Also and other info you want to share is welcome!

If you've made it through my saga, I appreciate it!
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Unread 10-29-2009, 10:10 PM
Re: Adenocarcinoma In Situ

Welcome, 2XSurvivor!

As we say, we're very sorry you're here but are glad you found us. You'll find tons of support and info that will help you along your journey.

Your story sounds eerily similar to most other adenocarcinoma dx. Meaning, most ladies didn't have a history of abnormal paps, and the dx comes totally unexpectedly. It's very good you were staying on top of things in that regard. It's also very good you're seeing a gyn/onc since they are the experts and you want the very best.

My adenocarcinoma was diagnosed a bit later than yours (even though I was religious with my paps), so I went straight from colpo/biopsy to the radical hysterectomy (at gyn/onc suggestion, we also took the ovaries). Since adeno- rises from glandular cells, it can more easily "hide" and be missed on routine paps. That's likely the reason your gyn suggested the hyst. Be honest with the gyn/onc about your concerns and don't hesitate to ask questions. (BTW, it's a good idea to take a note pad to write your questions and their answers.)

This is serious but very treatable, and you've caught things early which is great. Besides, you've kicked cancer before - you can do it again!!

P.S. I'm also a two-timer (check my sig).

Unread 11-10-2009, 07:21 PM
Re: Adenocarcinoma In Situ

I was dxed with AIS off of a cone biopsy. First I had my first ever abnormal pap- then cone, which showed the AIS. I was young at the time...26, so after much thought (and doctors visits) we chose to begin our family. I was originally diagnosed in May 2005 and had my hysterectomy in October 2008. Just had my year follow appointment and all was good! I won't lie- it was a stressful couple of years, with lots and lots of doctors appointments (for pregnancies and lots of paps...) but it worked out for me. I wish you luck!
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Unread 11-22-2009, 11:12 PM
Adenocarcinoma In Situ

Hi 2xSurvivor,

I too have AIS and have been dealing with it for the last 14 months.

I went in for my routine Pap Aug 08 and it showed AGUS; then a punch biopsy showed AIS; then a cone confirmed AIS yet again; three months later in Jan 09 I started seeing a gyn-onc and have been to see him every three months since. I had several more Pap/ECC's, a LEEP cone, and now I'm scheduled for a hysteroscopy and possible repeat cone on Dec 1st.

My doc is trying to be as conservative as possible without risking my health of course. So we are taking one step at a time. He wants to do the scope to be sure there isn't something inside the uterus, like a mass, that is causing all these abnormal tests. Depending on what it shows will decide what we do next.

I am 28 and am blessed to have a son (he was very preterm and has several disabilities) and would love the chance for another, but the #1 most important thing is my health, so if that means a hyster, so be it.

That being said, nothing takes away fear, so I am with you completely on that. I hope your procedure on the 12th went well and I hope you'll keep us posted!

Take care! )
Unread 11-23-2009, 08:48 AM
Re: Adenocarcinoma In Situ

Hi, my procedure on the 12th went great! I was in pain for a couple days and felt crappy for a few more but and doing great now. I did learn that the margins of the cone were negative and the only abnormality was AIS in the sample I don't see my gyn onc until 12/4 and at this point hope that he agrees to do the hysterectomy soon. When this started, we were unsure about whether we wanted more children (we have 2 sweet boys who joined us through adoption!) but now want this ticking time bomb out of my body! I've already lived with cancer hanging over my head with testing every few months and have no desire to go back to that place. I am ready to move forward and be healthy once again.

Hope you get a normal test soon, OneStrongWoman!
Unread 11-23-2009, 08:57 AM
Re: Adenocarcinoma In Situ

Hi 2xSurvivior -

I'm so glad to hear you're doing okay now. I also have AIS - found in September. Did the cone in October and tomorrow I'm having my hysterectomy.

I don't know about you, but the waiting for the doctors appointments, test results or surgery is sooooo stressful. I'll be thinking of you until your December 4th appointment.

Hopefully your body heals well -- and that the holidays help to distract you.

Take care!
Unread 11-23-2009, 09:03 AM
Re: Adenocarcinoma In Situ

education123 - why type of hyster are you scheduled for? Abdominal, lap? I am right with you, waiting for the appointments are torture! I am lucky to have 2 small children to keep me busy during the day, and Thanksgiving plans are occupying my mind too!

Many good thoughts coming your way for fast healing and no complications!
Unread 11-23-2009, 09:13 AM
Re: Adenocarcinoma In Situ

2x - I'm having the daVinci hysterectomy. Originally they thought my cancer was further along and planned to do a radical hysterectomy -- but fortunately the cone only showed AIS. Yahoooo!

I also have 2 children to distract me. They help immensely. I've been running around preparing for the holidays. My Christmas decorations are up and we are almost set to go. Today I just need to get the lights up. I figure if I can't lift, stretch or over exert myself for 6 weeks, I'd better get this done before surgery. It helps to distract me too I guess.

Thanks for the good wishes. I'll be thinking of you -- and I'll keep you posted.
Unread 11-23-2009, 09:19 AM
Re: Adenocarcinoma In Situ

Cool! I found out recently that the hospital I am treated at has the DaVinci, I am hoping to have that as well. Can you share what limitations you will have after surgery and for how long? I am dying to know more about it and pray that I can have that one too since it seems the recovery is so much faster from it.
Unread 11-28-2009, 01:27 PM
Re: Adenocarcinoma In Situ

Hi 2X -

Well, I had my daVinci on Tuesday. Came home Wednesday. Slept mostly. Thursday and Friday feeling pretty good -- only Advil during day with Vicodin for night time. Today I'm feeling just tired I guess.

Restrictions are pretty similar to regular hysterectomy because most of the important healing is on the inside. That said, I seriously doubt I would feel as good as I do if I had a large abdominal incision. My 5 tiny 1" incisions don't bother me at all. Though, like a large cut, I can't use my stomach muscles much.

I'm happy to answer any questions about my experience with daVinci -- don't know what your main concerns are. Also, would love to chat with another AIS survivor.

Again, I'll be thinking of you until your appointment. Take care of yourself.


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