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AIS (Adenocarcinoma in Situ) AIS (Adenocarcinoma in Situ)

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Unread 04-23-2002, 08:12 AM
AIS (Adenocarcinoma in Situ)

Hello Ladies!

I am desperately searching for support and information from anyone else who might know and have experience with AIS.

My diagnosis started in September last year when the Adenocarcinoma in Situ cells were found in my routine PAP. I feel lucky for that, as Dr. after Dr. have now told me how difficult this cancer can be to find, treat and follow as it can be multi-focal.

I had cervical dysplasia on 1995 and had laser surgery to treat that and haven't seen it since. Now out of the blue here is a different kind of cancer cell growing.

I had many biopsies and colposcolys and "shmears" to find out more information but no test or culture since the original pap showen AIS cells. Based on this, the onclolgist did a cone and D&C to determinte location/stages. The cone came out with one focal site of AIS with negative margins and I went in for my follow up thinking it would be over, and the Dr. proceeded to tell me that he recommends a hysterectomy as this is a tricky cancer that like to hide in the many layers and glands lf the uterus/cervix.

Feeling totally shocked, totally alone......I ventured on....

I have gone for many opinions since (3), one Dr. acted as though I was wasting his time, that this was no big deal and manageable, and yet everything I read, and the risks outlined by other doctors, lead me to believe that a hysterectomy is the least risk option for me because of the illusive nature of AIS.

I have no children yet, and am more concerned with my health than anything else. I have been on this search on my own as my husband has been there "to listen" but has not found it a priority to come to my appointments - he says it's my body, my decision, he'll be there for me, to listen but the decision is up to me - thanks! He made it to one appointment thought....the one where the Dr. said it was no big deal, so that is the one that sticks in his mind and he holds out for hope I guess - so did I for a while.

I am having trouble concentrating on anything as I try to make this difficult decision, I am 29 years old - no children yet, and having a child at this point, if I opt not to have the surgery -and live a life of biopsies and waiting- can put me at risk for the cancer to become aggressive and spread. (the conservative treatment for AIS is ECC and colposcopy every 4 months for 2 years and every 6 months thereafter for the rest of my life!!)

I'm scared to have a hysterectomy as I want a healthy sex life, but scared to keep it as I seem to have a cervix that cancer likes to grow on....

Help? Anyone!!

I feel confused, shaken, and alone....

Thanks in advance,

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Unread 04-23-2002, 11:40 AM
AIS (Adenocarcinoma in Situ)

I am so sorry that you are having to go through this right now. I really don't know anything about asi. I have cis. I wish I knew what to say to make yu feel better. I do know that the ladies here are wonderful and someone will be able to help you. If you ever just need someone to cry to I am your girl. I am 29 also and having a hysterectomy on May7th. Please let me know if there is anything I can do for you.
Unread 04-23-2002, 12:49 PM
AIS (Adenocarcinoma in Situ)

Thank you Darlene! I have read a little about CIS, is it the same as AIS in that it is hard to follow the progression and that it is generally found in the endocervical canal first?

Are you married? Any children? I wonder how this will effect my marriage and it worries me because the weight of the decision is on my shoulders, but the consequences effect us both.

I've been thinking long and hard about this decision, and I have 2 deaths in my family related to cancer and about 5 people living with it or suriving it now in my family, so I guess that's why I feel the right decision is to have the hysterectomy - get the cancer out!!

Thanks for your encouragement - My thoughts and prayers are with you also! Let me know how the operation goes - I'm quite nervous of it, I have to schedule it soon....

I see one more Oncologist for an opinion on May 2nd, then the next step will be to schedule and get the time off of work....

X's and O's
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Unread 04-23-2002, 02:18 PM
AIS (Adenocarcinoma in Situ)

Hi Susan, welcome to cancer concerns .

I dont have any experience with adenocarcinoma but I did a searh on this site and there are quite a few threads. Here is the link , maybe you will find something in it , to help. Also if any of the ladies who have posted ,sound similar to your diagnosis, I am sure they wont mind if you email them.

Being diagnosed with cance can be very frightening. All the ladies here know exactly what you are going through , right now. The fear , the shock . We are here always for you. Come rest in our arms and heart.

There is also another forum.....aching hearts where there a quite a few ladies who are grappling with not being able to have children. They will definately understand how you are feeling..... pop in whenever you wish. They will welcome you with open arms

Remember we are always here , anytime you need us. We wont let you walk this path alone. Love and hugs always xxx
Unread 04-23-2002, 03:14 PM
AIS (Adenocarcinoma in Situ)

Hi Susan,
I just had a hysterectomy 5 months ago for adenocarcinoma Stage 1A. I originally had a colposcopy that showed moderate to severe dysplasia-then had a Leep which showed adenocarcinoma in Situ. (I never had a cone which probably would have shown that it was Stage 1A adenocarcinoma.) I was faced with the same decision you have to make now. I have two children but wanted a third.
I decided to have the hysterectomy.

You seem well informed. If you want to preserve fertility you can just have the cone and be closely followed. My oncologist told me that many women do this. The prognosis for this is very good. If you want to be more conservative than you should go ahead with the hysterectomy. You would keep your ovaries and could use a surrogate if you wanted to have your own children.

It's a tough decision. Because I already had two children, the doctors were telling my to have the hysterectomy and not take the chance.

If you go ahead with the hysterectomy the surgery itself was the easy part. The recovery was very easy. With Adenocarcinoma in situ and Stage 1A adenocarcinoma you do not need further treatment and the hysterectomy is over 99% curative.

Please feel free to email me with any questions.

Unread 04-23-2002, 04:11 PM
More Questions

I am so happy to have some support from people that know what I am going through - I get so excited when there is a post so thank you so much!!

Has anyone with knowledge of Adenocarcinoma in Situ heard of it being a more aggressive cancer, and any complications healthwise during a pregnancy?

One of the doctors said that since pregnancy can wreak havoc on your immune system, the cancer can come back and be more aggressive. Especially this one.....

My concern is that they can't guarantee me that the cone got everything, there could be other focuses.

I'm willing to risk my fertility to maintain my health, so even if I have the hysterectomy and they say no more was found I can live with that and be happy I am cancer free with no treatment - I have insecurities about whether or not my husband can as he hasn't been there as much as I would have liked him to be through this and I am already angry. I feel he is judging me sometimes, I realize he is going through feelings of loss too but....

Anyone dealing with any of these issues???

Unread 04-23-2002, 04:21 PM
AIS (Adenocarcinoma in Situ)

Hi Susan, at the moment you mind is going round and round in circles..... perfectly normal. There is never any ' guarantee ' that a hysterectomy is going to ' cure ' you but take hope that in the majority of cases , this is all that is needed. There are many women who can attest to that
Mine was an aggressive type of cancer and I did have complications but what happened to me is very, very unusual.

As for your husband... sometimes it is very hard for them to deal with their loved one getting what they see as ' a terminal disease' try to talk to him about this , maybe he can share his thoughts and fear with you. Tell him that cancer isnt a death sentence. That you need him and his understanding and love right now.

You take care, sending you lots of hugs and love in this emotional time x x x Dont forget we are always here for you
Unread 04-23-2002, 04:42 PM
AIS (Adenocarcinoma in Situ)

Hi Susan,
I very often felt like my husband did not understand. I still feel that way. I found a good therapist to talk all of this through with. This brings up so many issues.
The women on this sight have been very understanding and most of us have unfortunately "been there." It's a good place to vent, especially if you feel like you're not getting the support you need at home.

Unread 04-23-2002, 05:37 PM

Hi Susan, I had invasive adenocarcinoma stage 2A. As I understand it adenocarcinoma is difficult to find because it hides up inside the cervix. Sometimes it is difficult to clearly say whether it is uterine or cervical cancer and it often isn't found until it grows big enough to "hang" outside of the cervix. It is also a more agressive cancer. It can have a 99% survival rate if caught early as yours has. One thing I wanted to mention is that I had a normal pap in March and by November I was stage 2A. I got pregnant in March and the doctors felt that the hormones from the pregnancy caused the cancer to grow faster. I would ask an oncologist about this before getting pregnant. I know it is a very difficult decision to make but you would want all the facts to make the best decision for you. I ended up with radiation because of my stage but you could need nothing more than the hyst. Take care and I will be keeping you in my prayers. Feel free to e-mail if you have any questions or just want to vent.
Unread 04-25-2002, 09:27 AM
Mayo Clinic

My DH keeps mentioning that maybe we should go to the Mayo Clinic. I wonder what good it would do because I feel they would have published anything new about any treatments and stuff if there were any new advancements, but I don't know much about that place, other than it is expensive.

Any thoughts on that? Like would they have more info on AIS than soemwhere else? Their web site certainly didn't.

Still confused and looking...


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