It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Cervical & Ovarian Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 10-30-2006, 08:39 AM   #1
Junior Member
(female)
 
Join Date: Oct 2006
Location: New York, NY
Posts: 26
Lauren55 HB User
Cervical Adenocarcinoma in-situ

Hello All,

I was just diagnosed with cervical adenocarcinoma last month. I am having a cone biopsy this Wednesday to remove the cancer and to determine if the cancer is invasive or not. Has anyone else had adenocarcinoma in-situ? I have researched a lot on the disease and I know it is less common than squamous cell carcinoma of the cervix. I have also read that adenocarcinoma starts higher up in the cervix and is more difficult to find on a pap smear. I have had regular paps for the last 8 years and was shocked to find out that I had this last month. I am only 26 and am hoping that I will not have to have a hysterectomy. Any feedback on adenocarcinoma would be great. Thank you...

 
Sponsors Lightbulb
   
Old 10-30-2006, 10:17 AM   #2
Senior Veteran
(female)
 
Join Date: Nov 2004
Posts: 511
karen32 HB User
Re: Cervical Adenocarcinoma in-situ

Hi Lauren, sorry to hear you have recieved this diagnosis. It is a shock isn't it? I had squamous cell, but I wanted to let you know if you use the search tools on this forum, and key in adenocarcinoma in situ you will find several posts from women who have experienced this. One that stands out for me is ilovsporty (I think that was her username), she actually had 1a1 adenocarcinoma removed via cone (with a second cone to confirm no residual disease) versus having the hysterectomy. There is also a procedure called a trachelectomy that removes the cervix only - it has some pretty strict criteria that need to be met in order to do the procedure, and there are only a handful of docs that do it, but it could be a potential fertility sparing option for you.

Are you seeing a gynecologist oncologist? You might want to consider it, they are the experts when it comes to gynecological cancer and can maybe give you treatment options that you might not have realized were available. Definately the cone is the first step, and then go from there.

I'll be thinking of you on Wednesday.

Karen

 
Sponsors Lightbulb
   
Old 10-30-2006, 10:35 AM   #3
Junior Member
(female)
 
Join Date: Oct 2006
Location: New York, NY
Posts: 26
Lauren55 HB User
Re: Cervical Adenocarcinoma in-situ

Karen,

Thank you for getting back to me. I will definetly use that search option and see what I can find. Hope all is well with you!

Regards,

Lauren

 
Old 11-16-2006, 12:40 PM   #4
Newbie
(female)
 
Join Date: Nov 2006
Posts: 8
meg3307 HB User
Re: Cervical Adenocarcinoma in-situ

Hi Lauren,

I've just been diagnosed with adenocarcinoma in situ, I'm 27 years old and have not had children yet. I'm scheduled for the conization surgery in a few weeks. I was just diagnosed yesterday after first having an abnormal pap followed by a colpo that showed all biopsied areas with the bad cells. This is all really scary to me. I've had a normal pap test every year for the last 10 years, so this is a huge shock. I hope that all goes well for you Lauren, I know how hard this is to go through. For me, I'm so worried about the cone biopsy coming back with positive margins. The thought of having a hysterectomy at 27 and never having children really has me so upset. I just keep searching through articles on-line to learn more about this situation, but none of the answers are very comforting right now.

Meghann

 
Old 11-16-2006, 10:06 PM   #5
Junior Member
(female)
 
Join Date: Nov 2006
Posts: 23
teaspoon HB User
Re: Cervical Adenocarcinoma in-situ

Hi Lauren-

I have had Endocervical Adenocarinomoa in Situ also. I opted for a hysterectomy. It was 10 years ago. I was then diagonosed with abnormal cells, told to wait for 4 months and retest, once again abnormal cells. I opted for laser surgery. ok, so here I am over 11 years later, abnormal paps since my original diagnosis of cancer. I have decided on seeking a second opinon becuase the abnormal cells are coming back again. All I can say is search the internet and do your research. I think when I was initally diagnosed they should have done the hysterectomy and also either radiation or chemo, but none was done. I will keep you posted as to what happens. Your cancer is rare, so was mine. Don't let them tell you Chemo or radiation is not needed. I am living proof 10 years later that is does come back, and back again. I am left with possible vaginectomy. Seriously, I am 35. That is SO important in my marriage. I mean, what I am suppose to tell my husband, sorry BABE but no more making love??? Don't let my outcome become yours. Seriously, not trying to scare you, but what is left once they remove your vagina? Ok well I am jumping the gun, I have no idea if you have even had a hysterectomy, if you have not do that and then do chemo. OK just my two cents. Jules. ;0)

 
Old 11-17-2006, 09:56 AM   #6
Junior Member
(female)
 
Join Date: Oct 2006
Location: New York, NY
Posts: 26
Lauren55 HB User
Re: Cervical Adenocarcinoma in-situ

Meghann-

I am so sorry to hear about your diagnosis. It definetly is a shock to hear that you have cancer after having "normal paps" all your life. Well, I had my conization 2 weeks ago and was very lucky to have clear margins! I was so excited but I also know that there is a chance this adenocarcinoma can come back. The conization is not bad at all... you will be a little crampy for a little bit and will have some bleeding but that is about it. I took 5 days off to rest after the surgery. I know Cancer is a scarry thing but you have caught it early and that is a good thing. Good luck to you and I hope you have clear margins as well.

Jules-

Wow... I cant believe that you have had bad paps still! That is so scarry and I wish you all the luck that you will not have to have more surgery. I am just wondering why you did not have a conization and opted for the hysterectomy? I am still hoping to have kids and thought that a conization is best for my age (26). However, one of my oncologists did suggest trying to have babies soon after my conization becasue there is a chance that the adenocarcinoma can come back and then they would have to give me a hysterectomy. I am NOT ready to have kids yet so I guess I will take the risk of waiting. Anyway do you really think it is necessary to have chemo/radiation for an early stage of cancer? Neither of my doctors recommended those options to me.

Lauren

 
Old 11-17-2006, 06:08 PM   #7
Junior Member
(female)
 
Join Date: Jun 2006
Location: San Francisco, CA, United States
Posts: 35
ktbee HB User
Re: Cervical Adenocarcinoma in-situ

Hi ladies,

Yes, a diagnosis of cervical adenocarcnoma is scary, especially because it's the more rare of the cervical cancers and finding good info on it can be really tough.

I was diagnosed with AIS in May of this year. It was a surprise because me and my doc thought we were just dealing with squamous CIS. The AIS was found in the tissue removed from my cold-knife conization. The first oncologist I was referred to recommended hysterectomy (I'm only 26), so I went for a 2nd opinion and my current oncologist feels it's okay to hold off on a hysterectomy as long as all my paps come back normal. I had my first follow up pap along with ECC and biopsies in September, and all came back benign!! My onc told me that if my next follow-up pap and ECC both come back benign (scheduled 12/18/06), then things are looking really good.

It seems to me that a person's treatment very much depends on the oncologist you see. Traditionally, AIS is treated with hysterectomy, but I think that younger doctors are feeling more comfortable holding off, especailly if the patient is young and hasn't yet had children. Also, I feel fortunate knowing that there is a trained surgeon in performing a trachelectomy (Karen mentioned this procedure) at the hospital I go to...so if the AIS comes back, I think I would look into this rather than jumping to hysterectomy.

Plain and simple, this diagnosis sucks. I really wish there was a better idea of how to treat it...and that all doctors were in agreement. The final decision really comes down to you, so it's important to keep yourself educated.

Meghann, I don't know if you're having a LEEP or a cold-knife cone, but I had the cold-knife done so if you have any questions before or after, I'd me more than happy to try to answer them. It's really not that bad.

To all you AIS ladies- let's try to keep each other posted...I'm curious to see how everything progresses and to hear what all your docs advise. I try to squeeze in as many questions as possible each time I see my doctor, so I'll share any useful info I learn. By the way, my doctor specializes in cervical cancer and HPV, and she's in the process of conducting a ton of studies on all aspects. I have no doubt that in 10 years, all our confusion over this will be a thing of the past.

Take care!!
Katie

 
Old 11-17-2006, 08:15 PM   #8
Junior Member
(female)
 
Join Date: Nov 2006
Posts: 23
teaspoon HB User
Re: Cervical Adenocarcinoma in-situ

Hi Lauren-

I re-read my post and realized that I left off a part of my history. I had already had two children by the age of 21 and new that I did not want any more. I originally opted for a cone biopsy. I wanted the chance to conceive again if anything(God forbid) ever happened to my children. I am happy to say they are healthy and now 13 and 14 year old boys. :0) When I went in 6 weeks after the cone biopsy later for a test to see if everything was clear, I had abnormal cells again. I believe at that time chemo or radiation should have been done. So at that time, I opted for the hysterectomy. I had normal paps for 10 years, then two in a row that were bad. That is when I opted for the laser surgery. The first pap was normal. I had another one in September and it was abnormal. I have never had a test revert and go back to normal. I have always had to operate or laser to get it corrected. I am now getting scared becuase I have nothing left to remove. I mean they took my uterus and cervix. My doctor wants to wait 4 months. But I have a large family history of cancer. I sent my paperwork over to the University of Washington Oncology department. I should know more by next week. My gut says that I need to move quickly and not wait 4 months. I think in your case the doctor is giving you good advice. Since you have not had children yet and you have not had a hysterectomy you need to try to keep the ability to have children for as long as you can. All the best to you! Jules.

 
Old 11-20-2006, 08:13 AM   #9
Newbie
(female)
 
Join Date: Nov 2006
Posts: 8
meg3307 HB User
Re: Cervical Adenocarcinoma in-situ

Hi Ladies -

All of your posts have been really helpful to me. After searching a ton on the internet, there really isn't much more to learn out there. So talking to all of you that have been through this is really helpful. I am having the cold knife conization in a few weeks. I'm hoping that it will get all of the bad cells since I don't have children yet. My husband and I are going on a cruise vacation in 2 weeks and our plan was to try to get pregnant after that vacation - it was kind of our last big thing we were wanting to to do before having a baby. So this diagnosis has me pretty scared about those plans. Another scary thing for me right now is the fact that until the conization is done in my state I am stuck with my regular ob/gyn, if the conization shows positive margins I am then referred to an oncologist. It seems like most of you were seeing a gyn oncologist at this point. I'm just hoping that we're taking the right steps to deal with the adenocarcinoma in situ diagnosis. My biggest fear right now is my fertility. I want to do whatever I can to preserve that until we have at least one child. Thanks for listening! Meghann

 
Old 11-21-2006, 09:18 AM   #10
Junior Member
(female)
 
Join Date: Oct 2006
Location: New York, NY
Posts: 26
Lauren55 HB User
Re: Cervical Adenocarcinoma in-situ

Meghann,

Please keep us posted on the outcome of your conization. Best of luck to you and we will all keep our fingers crossed. I also reccomend seeing a obgyn oncologist. I felt really comfortable with my Dr. because he deals with cervical cancer patients on a daily basis. Good luck to you and we all hope for clear margins!

Katie,

Wow... seems like the same story that I have. I am so happy to hear that you are all clear after your pap. I dont have mine until February but am hoping for the same results. It is nice to talk to people who are dealing with the same issues.

Jules,

Good luck to you. Thank you for sharing your story. I will keep my fingers crossed for you as well.

Please keep me updated.

Lauren

 
Old 11-21-2006, 06:11 PM   #11
Junior Member
(female)
 
Join Date: Nov 2006
Posts: 23
teaspoon HB User
Re: Cervical Adenocarcinoma in-situ

Hi Everyone!

Well good news! I was accepted by the University of Washington. They are seeing my case on Dec 4th where I am sceduled for a biopsy. I'll keep you posted! Thanks! Jules.

 
Old 12-01-2006, 08:57 AM   #12
Junior Member
(female)
 
Join Date: Nov 2006
Posts: 11
wendy674 HB User
Re: Cervical Adenocarcinoma in-situ

Hi everyone-
I'm also newly diagnosised as having AIS. I'm 32, married, and just went off the pill 6 months ago so that my husband and I could start a family. I've been dealing with all of this craziness for 3 of the six months now and needless to say...not pregnant. (i guess that may be a blessing) My pap and my colposcopy came back with abnormal results but pretty inconclusive so my GYN performed a LEEP procedure 3 weeks ago. Unfortunately, my LEEP results came back with positive margins. The good news was the ECC showed no dysplasia just inflammation.

I saw my first gyn-onclolgist yesterday. He has suggested that I have a cone once I totally heal from the leep and try to get negative margins. I have a second opionion scheduled for Dec 12th. Has anyone heard of just following positive margins at this point rater than doing another cone.

I've looked at some of the research and some of it suggests that the reoccurance rate of is similair with negative or positive margins. I'm not sure what this second Dr. will say. I just know that I want to have a family and just trying to figure out the best way to do that and make sure that I'm okay too.

I'd be very willing to have a hysterectomy after I have a baby or two. Anything that you ladies have found out would be very helpful on this whole AIS issue with pregnancy/fertility.

I know that once you have a conization you do run a risk of having troble conceiving due to the possibility of cervical stenosis and then a higher risk of not carrying a baby to term due to an incompotent cervix (cervix opening before term). I've found minimal info on the internet so any insight you could share would be so appreciated.

This justs sucks for all of us and it's just nice to know that we are not alone. Thanks for your help and I will keep all of you in my prayers too.

Wendy

 
Old 12-01-2006, 01:52 PM   #13
Junior Member
(female)
 
Join Date: Oct 2006
Location: New York, NY
Posts: 26
Lauren55 HB User
Re: Cervical Adenocarcinoma in-situ

Wendy,

I am sorry to hear about your diagnosis and hope that everything turns out for you and your husband. I hope that once you have the conization you will get clear margins. Hopefully you have been getting paps yearly so you should be ok after conization. My doctors said that it should not be a problem carrying a baby but there is always that risk (they have to say that just in case anything does happen)... but the oncologist also said that if you are having problems they can always put you on bedrest towards the end of pregnancy.

I hope you get the appropriate treatment and it is a very wise decision you are seeing an oncologist. AIS is tricky and I hope for the best for you and your husband. Keep strong and please keep us updated.

Lauren

 
Old 12-03-2006, 08:42 AM   #14
Senior Veteran
(female)
 
Join Date: Jul 2003
Location: U.S.A.
Posts: 1,200
SusanGene HB User
Re: Cervical Adenocarcinoma in-situ

Quote:
Originally Posted by ktbee
Hi ladies,

Yes, a diagnosis of cervical adenocarcnoma is scary, especially because it's the more rare of the cervical cancers and finding good info on it can be really tough.

I was diagnosed with AIS in May of this year. It was a surprise because me and my doc thought we were just dealing with squamous CIS. The AIS was found in the tissue removed from my cold-knife conization. The first oncologist I was referred to recommended hysterectomy (I'm only 26), so I went for a 2nd opinion and my current oncologist feels it's okay to hold off on a hysterectomy as long as all my paps come back normal. I had my first follow up pap along with ECC and biopsies in September, and all came back benign!! My onc told me that if my next follow-up pap and ECC both come back benign (scheduled 12/18/06), then things are looking really good.

It seems to me that a person's treatment very much depends on the oncologist you see. Traditionally, AIS is treated with hysterectomy, but I think that younger doctors are feeling more comfortable holding off, especailly if the patient is young and hasn't yet had children. Also, I feel fortunate knowing that there is a trained surgeon in performing a trachelectomy (Karen mentioned this procedure) at the hospital I go to...so if the AIS comes back, I think I would look into this rather than jumping to hysterectomy.

Plain and simple, this diagnosis sucks. I really wish there was a better idea of how to treat it...and that all doctors were in agreement. The final decision really comes down to you, so it's important to keep yourself educated.

Meghann, I don't know if you're having a LEEP or a cold-knife cone, but I had the cold-knife done so if you have any questions before or after, I'd me more than happy to try to answer them. It's really not that bad.

To all you AIS ladies- let's try to keep each other posted...I'm curious to see how everything progresses and to hear what all your docs advise. I try to squeeze in as many questions as possible each time I see my doctor, so I'll share any useful info I learn. By the way, my doctor specializes in cervical cancer and HPV, and she's in the process of conducting a ton of studies on all aspects. I have no doubt that in 10 years, all our confusion over this will be a thing of the past.

Take care!!
Katie
<<The first oncologist I was referred to recommended hysterectomy (I'm only 26), so I went for a 2nd opinion and my current oncologist feels it's okay to hold off on a hysterectomy as long as all my paps come back normal. I had my first follow up pap along with ECC and biopsies in September, and all came back benign!! My onc told me that if my next follow-up pap and ECC both come back benign (scheduled 12/18/06), then things are looking really good.>>

THIS REALLY SHOULD HIT HOME WITH US THAT CANCER IS NOT AN EXACT SCIENCE AND THAT JUST BECAUSE AN EXPERT PHYSICIAN SAYS SOMETHING DOES NOT MAKE IT SO!! WE MUST GET SECOND OPINIONS AT ALL TIMES!!!
You could very well have had a hysterectomy while the entire time there would have been other oncologists saying to hold off and now your biopsies are fine!! What does this tell us? I have always believed that if a specialist says something, that's it ! He/she's right and go for it ! And now, I read this.
I am now convinced that doctors cannot always be trusted.
__________________
Susan Gene

 
Old 12-04-2006, 09:11 AM   #15
Newbie
(female)
 
Join Date: Nov 2006
Posts: 8
meg3307 HB User
Re: Cervical Adenocarcinoma in-situ

Wendy -

Sorry to hear about the diagnosis, it really is scary. The news is still really new for me as well, so I unfortunately don't have answers to your questions. The advice I've gotten, while not scientific, does seem to help. And that is to just keep trying to keep my thoughts positive. Me and my husband planned on trying to get pregnant early next year, and I'm really hoping that it will still be possible. I'm having my conization in 2 weeks, I really can't wait to get the news back from that. Until then, everything just seems so up in the air.

I will keep you in my thoughts, as well as all of the other ladies on here that are going through such similar hard times right now. It really is great to have all of you to talk to.

Meghann

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Just diagnosed with cervical Adenocarcinoma Sherri102 Cancer: Cervical & Ovarian 13 02-18-2010 11:45 AM
Is uterine cancer cervical cancer that has gone untreated? herekittykitty Cancer: Cervical & Ovarian 8 09-08-2009 06:12 AM
cervical smear gin77 Human Papillomavirus (HPV) 6 04-07-2009 07:32 AM
Cervical Adenocarcinoma: recurrence ?'s Prunella Cancer: Cervical & Ovarian 7 02-18-2009 08:37 PM
how old can you be to develop cervical cancer msrachelmayne Cancer: Cervical & Ovarian 2 02-08-2009 11:07 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 09:21 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!