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Adenocarcinoma in situ

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Hello, I was wondering if anyone else has the diagnosis of Adenocarcinoma in situ with CIN II and high grade dysplasia?

I am only 23 years old with no children. I have an adnormal pap in April 08, and six months later had another adnormal so was scheduled for a biopsy. I had the biopsy in January and it came back as Adenocarcinoma in situ with CIN II and high grade dysplasia. The ob/gyn recommended a hysterectomy since the bad cells are in my glands, or thats how I understood it. But I am only 23 and married, with no children. He recommended the Leep to try to see if that would work so we could have a child eventually. I had the leep yesterday and will know the results next week. He said if this didn't get itall he would schedule the hysterectomy. I want to have children, but I don't want cancer either so I'm alittle torn between the two. I know my health is important but having a baby in a few years is important to me as well.

My question is, has anyone had this diagnosis and has a Leep cleared it up? What did you do to get better with this diagnosis? Any information or discussions would be greatly appreciated! Thanks so much.

Explore topics in this discussion:

Cancer Surgery Vasectomy Hysterectomy HPV Pregnancy Cervical cancer

18 replies

Hi.. I had Adenocarcinoma in situ. I you really want children I would have you get a second opinion.. no one should pressure you into a hysterectomy. You should be seeing a gyne-oncologist, they specialize in these things. I had 3 LEEPs and a cone biopsy and I was given clear margins about 8 months ago.. There are more options than just a hysterectomy if you want kids. A cone tends to get more or even a trachelectomy. I am really surprised at the suggestion of a hysterectomy at 23. I am surprised that they didn't schedule you for a colposcopy at least after the first abnormal pap.

I think that you need to get more information and see a specialist before you make ANY decisions. If you want to preserve your fertility, you need to fight for it. I was also told that I "should" have a hysterectomy after my 2nd LEEP but I said no. Actually I said that I'd rather be dead than not be able to have kids. Anyways, I didn't do it. You should also get a HPV test because AIS tends to jump a bit. After my second LEEP the margins were clear but the ECC came back abnormal.

This took me a year to of surgeries and waiting, but I eventually was given clear margins. I had my 6 month check about 2 months ago and was given clear. There were still a few abnormalities but nothing that can even be diagnosed as dysplasia. I go back in another 6 months.

Please get informed.. ask questions and don't let them pressure you into a decision you're not ready for. Look at your options and try things before giving up on your dreams.

Kat

Well the doctor knows I want a child eventually so he said we'll try the leep first. The way he talked it was really bad and I need to get it taken care of right away. I think your right about a second opinion and I definately need to know more facts about it. I haven't been able to find much of the adenocarcinoma in situ online. After I get the results next week from the Leep I will know more about what to do.

I am glad to hear you had the same diagnosis and got it taken care of with no hysterectomy. But have you had a child and did you have problems conceiving or carrying? I have read stories of having problems after leeps.

I have not had a child.. but I'm going to have more hope after having LEEPs and a cone than having a hysterectomy. My gyne-oncologist says it should not be a problem.

I know that often times a hysterectomy is recommended when there is glandular involvement. Unlike Squamous cells cancer, which will often spread to neighboring cells, glandular cells have a tendency to develop in multiple sites. So, even when there are clear margins on a cone, it's possible there are other cancerous sites that would go undetected without a hysterectomy. (read "Treatment for Adenocarcinoma in Situ" here http://www.healthcentral.com/ency/408/guides/000046_8.html )
Adenocarcinoma also tends to be faster growing than squamous cell, and often goes undetected b/c of the way the glandular cells are deeper inside the tissue.

It's good that your doctor is working with you to preserve your fertility by trying less aggressive procedures first. It never hurts to get a second opinion, and every doctor has different personal preferences and viewpoints.
I'm sorry about your diagnosis. I don't have any input on a LEEP b/c I've never had one. Just had a cone, and will hopefully be able to tell you tomorrow if it cleared it all up for me. I know there has been research to show that dietary supplementation has been able to help slow down, or clear up the abnormal cell changes. I'm currently researching that, so will post information once i understand the research better.
Good luck!!

You know, I've been that radiation may be an option in lieu of hysterectomy. I don't know much about this, but it may be something worth researching yourself, and then discussing with your doctor.

http://www.oncolink.org/types/article.cfm?c=6&s=17&ss=129&id=8226&p=3
Scroll down to the section on Radiotherapy. Says "Surgery and radiation have been shown to be equivalent treatments for early stage cervical cancers..."

Hi Sara, I had a cone biopsy on December 5 which found a 5mm x 2.9mm adenocarcenoma, the surrounding cells were insitu. I got referred to a gyno/oncologist who did another cone taking most of my cervix on Jan 21. That result came up clear...no abnormalities at all so they got it all in the first cone. I still have to have a hysterectomy but my gyno/oncologist said that if I had not had kids that she would suggest to do it now because I have a bit of time before I have to have the hysterectomy. I have had 2 kids and had no intentions of having anymore so the hysterectomy is booked for 2 weeks time. With insitu, that is the stage below cancer...you should get another opinion! I hope it all works out :-)

Best of luck Sara, I hope your LEEP comes back successful. You've been given a lot of really good advice on here, what a great resource!

How do you know if there is glandular involvement?

That's what Adeno means....Squamous is cellular and Adeno is glandular. Your biopsy will show which type you have. 80% are Squamous and 20% are Adeno.

Dear Sara,

Usually a cold knife cone is done for adenocarcinoma instead of a LEEP since the tissue is excised and will have a cleaner edge for pathology. Scar tissue can form from a CKC. The LEEP's edges are burned, not as clean as CKC. A CKC is done under general anesthesia so that a larger amount of tissue can be sampled as well as the location - deeper in the endocervical canal (the inside of the cervix that is the neck of the uterus).

Radiation can damage surrounding tissue and there can be lasting effects.

It is best to see a gynecologist-oncologist who has experience with this, and even then, 2nd or 3rd opinions are wise before making decisions about major surgery. Remember to get copies of all of your records and path reports. Keeping you in my thoughts & prayers.

I had adenocarcinoma in situ and the doctor said that normally a complete hysterectomy is the ideal because you won't have to worry about anything, but they suggest a cold knife cone biopsy instead. There's no need to take out everything if they can just cut out the bad cells. A cold knife is a one day procedure and I was out the hospital in the same day. You will have to go about every three months for a pap smear and a scraping (so they can make sure that they got all the bad cells). With LEEP, it cuts out the bad cells, but the doctors can analyze them as they can with a cold knife. I hope this helps.

Good luck. God bless

Well, I got the results from the nurse today. She said it was what they expected but all the abnormal lesions were removed. I'm not sure what that means. I'm glad the abnormal is removed but what the heck does it was what they excepted mean?

I have a check up in a couple of weeks and will get to talk to the doctor then about the results. The nurse did say a pap will be done in 3 months. I guess this is normal procedure.

sara, when they say it was 'what they expected', it means the pathology report showed that you had the same diagnosis as was on the previous biopsy taken during your colposcopy. and, if they said they got it all, then that would indicate clear margins. go ahead and ask for a copy of your report....that should make you feel better seeing it in print. hope you're healing well.

I was just diagnosed on friday with adenocarcinoma insitu, I am from Ontario Canada where things are a bit different than the United states, I went to an oncologist after 1 abnormal pap, high grade in the cervix and uterus, had 3 biopsis, one came back positive for adenocarcinoma. I am being referred to the cancer clinic. I am 26 with no children, basically my oncologist right away told me there are options, never was I told the immediate fix was a hystorectomy, I will hear this week when I go to the cancer clinic. I don't know about my margins but the oncologist stated that she definatly thinks a cone will work or take out my cervix however suggested that taking out my cervix would be the one most looked at. This would leave me able to still carry a child but would have to deliever C-Section. Does anyone think my hopes are WAY up? or can anyone else confirm that this adenocarcinoma insitu is no as invasice as regular types of cervical cancer?

I had a similar diagnosis, except mine was CIN III. Cone came back with clear margins but my last pap was HSIL, so we're going to do a hysterectomy. According to my gyn-onc, you can do 2 cones. They'll likely have to stitch your cervix shut during pregnancy since you'll have an incompetent cervix but it didn't sound like a big dea. I'd give that a whirl first...

I just want to clarify something that was said here, that has the potential to scare the crap outta ya. Adenocarcinoma is cancer in the 'glandular cells' of the cervix, NOT the glands (some people will assume lymph nodes when you say that). Unless it has spread, it is in the cervix only. Just wanted to clear that up.

That said, I think you need to get at least 2 opinions before you decide anything. You are SOOOO young to have to go through this. Please use us and these boards for support. We are here for you!

Good luck, and let us know what happens, k?

I am so happy to know this place.
I married last year and I was diagonised as adenocarcinoma insitu last month by bioposy.It was a big shock for me cuz I donot have some apparent symptom until I got abnormal rap test result and HPV positive through routine physical examination.

4 weeks ago I got CKC and the margin is negative and the ob/gyn let me follow-up 3 month with rap test and HPV test and currently I donot need to have the hysterectomy.The ob/gyn told me if I donot want have a baby I should get hysterectomy while I have request to keep for bearing so they ask me to take care and I also consulted with other patients friends like my postion and finally they all got the hysterectomy.It also scary me.

So now I am waiting for the next 2 rap tests resluts and if that show ok I would like to prepare get preganant ASAP.I am in China and we have home plan that means every couple only can get 1 baby(although it is unreasonable we have to abide by it)

I am afraid this disease will recur although this time the surgery can cut off the focus part.So I think preserve my health is more important

What I have learned is if your CKC result show there are invasion cancer or margine is positive you should get hysterectomy. if not pls follow-up for the rap test since you want to have a baby.

I will let you know my update too and we are together to fight it

Hi! I had adenocarcinoma in situ CIN1. I had the Leep done and that did not take care of it, so my gyno rec a Hyster. I seeked out an Oncologist, 2 actually for second opinions. Both were great and preferred i NOT get a hyster RIGHT NOW! I am 32, and have 2 kids and hubby had a vasectomy years ago so we were done having kids. Still with that said both doctors asked me to wait, come back every 3 months for monitering and go from there. Since we are done having kids I chose to go ahead and have the Hyster on June 9, 2009. I had the DaVinci Robotic Lap Assis Hyster and all went great! My advice, seek a few Oncologist's in your area and consult with them. I think most would agree you are far too young but they will have a better outlook as far as your path report, etc. Collect all your records and seek opinions, pref from an Oncologist! Good Luck!!!

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