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Really need help - adenocarcinoma in situ Really need help - adenocarcinoma in situ

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  #1  
Unread 11-24-2005, 08:41 AM
adenocarcinoma in situ

Hello everyone, I'm relieved to find a site that actually has some information for woman! I really hope someone has gone through what I am about to.

I'm 32, and have not had children yet. I had a couple of bad paps in a row and then a good colposcopy, but the doctor said I needed a cone biopsy anyway because he saw a glandular cell.
I had the cone biopsy, and they gave me my results on Monday.... it was adenocarcinoma in situ, and that the cone had clean margins.. meaning they got it all? This kind of leaves you reeling and I had no questions as I was shocked, but now that I have a tonne, I have no where to turn to.
They told me to start having babies now...and if in two years I am not pregnant, that I have to come in and have a hysterectomy because that is the "standard of care". They also said they would "manage" me by visits every 6 months for an ECC.

My concerns: Should I be having it now...is this a type of cancer that can come back quickly?

Is it possible that this cancer is somewhere else in my body? I know it says "in situ" but could there be another "in situ" say ... in my lungs? I am a smoker who just quit!

Should I get an MRI, a PET scan or a CT scan to rule that out, or to verify that they got it all.

Is adenocarcinoma of the cervix one of those cancers that can jump around?

If I have negative results with an ECC every six months for the next 2 years, do I really need a hysterectomy?

If I go ahead with a hyst, will keeping my ovaries be an option when I've had this kind of cancer.

Anyway, I don't want to keep babbling forever and dumping my problems on everyone, but if ANYONE has any thoughts on my situation I would really like to hear from them on this. I realise these are not medical opions, but would appreciate advise. If anyone has ever been diagnosed with the same thing, it would be really good to hear from you and your experience as well.

Thank you all of you for this forum, I've read many of your stories and you are all special women.

Although I'm feeling lucky they contained what they found in the cone, I'm still Scared and feeling alone,
Lydia
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  #2  
Unread 11-24-2005, 09:32 AM
Really need help - adenocarcinoma in situ

Lydia, I'm glad you found the hystersisters forum, there are women here who have dealt with adenocarcinoma in situ and they will be able to give you lots of good information.

I dealt with squamous cell which is a little different that glandular, yet I can certainly understand your shock and concern about this. they removed mine completely with a LEEP cone, but the "clean margins" are sometimes little comfort initially when you are facing the reality that this was lurking in your body.

You're not alone (((hugs)))

Karen
  #3  
Unread 11-24-2005, 09:48 AM
Really need help - adenocarcinoma in situ

Dear Lydia,
Oh, yes, it's very scary when you get a cancer diagnosis and, yes, "clean margins" is good - that means that when the pathologist examined the tissue removed during the colposcopy that there was sufficient "margin" of healthy tissue surrounding the cancer tissue that there's a pretty good indication that they "got it all." If you have a great deal of confidence in your gyn, then go with the recommendations. From the moment I discovered I had cancer, I wanted a gynocological/oncologist. You may wish to ask for a second opinion to ease your mind. Most doctors don't feel slighted by that request. I elected to have a nearby noted Cancer Clinic handle my care, and I'm so happy I made that choice. God bless and keep you.
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  #4  
Unread 11-24-2005, 08:54 PM
Really need help - adenocarcinoma in situ

Hi Lydia,

I had adnocarcinoma...Here is my story.. I went to my gyn on May 6th for a pap...that came back abnormal..I then had to go in for a colposcopy..that came back adnocarcinoma in situ...I then had to have a cone biopsy...the results from the cone came back as adnocarcinoma stage 1b..I was in total shock..I couldn't believe I had cancer...The cone did remove all the cancer..margins were clear..but in the end, this wasn't a cure..so on Aug 22, I had a radical hysterectomy..no chemo or radiation was needed.
As for this type of cancer, my doc told me this type is more aggressive and can jump around, but it's very rare to jump..and when he said jump around he meant..it could possibly go to uterus or ovaries..he was really just warning me incase I came out of surgery without my ovaries..which I really wanted to keep and Thank God I still have my tubes and ovaries....so yes, depending on the stage of your cancer...keeping your ovaries is an option.
I did have scans, chest x-ray and bloodwork before the surgery..and when I go back next month, I'll ask him if I should continue to have scans and a chest x-ray...I'd probably feel better having them.
I know you're scared and confused...It's not easy going through something like this...and don't feel like you're babbling and dumping your problems to us...that is what we're here for...
Kara
  #5  
Unread 11-25-2005, 12:18 AM
Really need help - adenocarcinoma in situ

Hi Lydia,

I also had adenocarcinoma of the cervix. My cancer was invasive and was stage 1b. My treatment was a radical hysterectomy and lymph node removal. I am young (almost 26) and was able to keep my ovaries.

I had normal paps and was diagnosed with a punch biopsy by my gyn. As soon as it came back as cancer, I was referred to a gynecological oncologist for treatment. Before I had a cone biopsy, I had a Pet/Ct scan. My cone didn't have clean margins, so I needed the hysterectomy. The cancer was localized within my cervix.

I was told that adenocarcinoma can behave more agressively than the more common type of cervical cancer. When I was first diagnosed, I did a lot of research - I found the American Cancer Society and the National Institute for Cancer to be good sources. If I remember correctly the cure rate for non-invasive cervical cancer is very, very good. I think it is probably very unlikely that your cancer would have spread anywhere.

I'm not sure if you are seeing a gyn-onc? If not, I would really recommend getting a referral to one, since you have concerns about your cancer. They are gynecologists who have an additional three years training in treating gynecological cancers.

I would do my research, get second opinions and follow my doctor's advice regarding a possible hysterectomy. I know the idea is devasting, but your health and survival are most important. I don't have childern and always wanted to, but I remember telling my gyn-onc the very first time we met that I was willing to do whatever was necessary for me to be okay.

I'm glad you found the site and hope you find it as great as I have. It has really been a comfort to me to be able to connect and share with other women in similiar situations.

s and best wishes to you.
  #6  
Unread 11-25-2005, 06:16 AM
Really need help - adenocarcinoma in situ

Thank you for sharing your situation with me Piper Creek. I'm really happy for you that you were able to hang on to your ovaries.
My doctor found two abnormal paps back to back so she sent me to a women's clinic in Ottawa. (I'm in Ontario) Funny thing; I'm not certain if my doctor is an oncologyst or gyn or not? My first visit for the colposcopy was one doctor...this same doctor actually did my cone biopsy surgery; so I guess he's a surgeon too. But when I went back to get the results, it was another doctor altogether telling me the results and that I need a hysterectomy within the next 2 years. They didn't tell me it was an invasive type of cancer, but everything I'm reading says it is. My general doctor has said she won't refer me for an MRI unless I have other symptoms.
I just want to be sure what's going on. The doctor who gave me the news told me when I asked what stage this was at (what they had removed from the cone) ... she said it's not at a "stage". So I asked the size of it; she said it was 1.5 X 1.5 X 1.3cm and that this was considered small. She used the words "pre-cancerous" in one sentence but then used "cancer" in another...
I so want to believe them, but I'm worried if I wait that it will come back.

I was reading your other post, you said that in the end you had to have a hysterectomy... did you have a reoccurence? I'm glad to hear that you are ok, and very grateful for your advice from your post.

Canadian sister
  #7  
Unread 11-25-2005, 06:32 AM
Thank you

Thank you for sharing your experience with me Kara... I'm so glad you got to keep your ovaries like Piper.

Both of you are giving me some hope here!
Like I was telling Piper, they won't give me a "stage" for what they found and removed in my cone. From what I'm reading it may be 1a? I think my next step will be to request a copy of my medical file and see another doctor for a second opinion to ensure I'm doing the right thing by waiting.

What's strange about this whole thing, is that I was married before and didn't want children. My marriage ended about 2 years ago...and I've since met the most incredible man and for the first time we've talked about having children....then This. It's like I met him too late in life! Don't get me wrong, I'm grateful for him and for the happiness he's brought to me. So we're now trying to decide if we should go ahead and try to have children and wait for the hysterectomy ... say put a drop dead date of 2 years from now; and if we're not pregnant then it wasn't meant to be.
It gets more complicated though, he's had a vasectomy. So we'd have to look at a reversal and that might take up to two years to have the swimmers back.

Anyway, bottom line... I need to make sure I'm ok. And I just need to know if I it would be better to have a hyster now. I guess I'm afraid to wait and I'm afraid to do it...kind of unable to act.

I've heard that menopause is brought on pretty quickly by this surgery... how are both of you?
  #8  
Unread 11-25-2005, 06:39 AM
Really need help - adenocarcinoma in situ

Karen,
You are right about the clean margins. I'm really glad that this is the case...but it doesn't stop you from wondering...and your mind goes in a million different directions.
Thank you for your kind reply, I'm glad to hear your cells were of the squamous kind, from what I'm reading it is more common and easier to predict )

Nottslanding,
I think I'm going to seek a second opinion, just so I'm sure on the timeline for my hysterectomy. Thank you so much for your advice and kindness )

Hanging in there,
  #9  
Unread 11-25-2005, 06:40 AM
Oops

Ok... I'm new to this internet thing...can you tell??
Those were supposed to be happy faces!!!
  #10  
Unread 11-25-2005, 11:13 PM
Really need help - adenocarcinoma in situ

Hi Lydia- I got your PM

I too was diagnosed with carcinoma in situ and adenocarcinoma in situ. Originally I had a bad pap which was abnormal (first one ever). I then had a colposcopy and it showed CIN II/III...Because of the high grade changes, my doctor recommended the cone biopsy...we decided on a small cone due to the fact that I am younger and still wanted children. The cone showed both carcinoma in situ and adenocarcinoma in situ. "In Situ" generally means pre-cancerous (or non invasive)...in the staging system it is considered stage 0. While it is not invasive, it does need to be taken care of/removed either by leep/cone/hysterectomy... Carcinoma in situ generally is "squamous cell". It basically moves in a predictable fashion, so to speak...so it would start from a little point and spread outward...so if you have clear margins, you can be pretty sure that the "bad" cells are removed. AIS is glandular in origin (originating the in the glandular cells vs. squamous cells)...it is said to be harder to detect, may or may not be more aggressive, is generally harder to screen for due to if being located higher in the cervical canal and the relative newness of the diagnosis. Depending on what article you read, it is also said to have skip lesions; so where CIS spreads from that one point out in a standard fasion, the AIS can "skip" so lesions may not be found next to one another...this is why the hysterectomy is the standard treatment currently...becaue of these skip lesions one cannot be sure that the "bad" cells have been removed, even if the margins are clear. This, however, is up to some debate...but some reasearch says that as high as 20% of women with clear margins after a diagnosis of AIS have residual cells outside of the biopsy area...

My doctor also initially recommended a hysterectomy- also saying that it is generally the standard of care (though more so in women that are done with childbearing, if desired)...He offered and I requested a second opinion with a gyn/oncologist. I also had all of my slides reread by a pathologist that specializes in women's gyn cancers...Sure enough, adenocarcinoma in situ (as well as CIS) was found-it was also found to be on the colopscopy slides but that was missed by the local pathologist...I had two lesions noted- and they were unconnected- they were both about 0.05mm way from two deep resection margins on the cone- the biopsy technically had clear margns but the AIS was very close. The oncologist said that I could do conservative treatment if I wanted children...she didn't put a time limit on it but she did suggest that if we wanted kids we should get started right away. Her recommendation was a hysterectomy after childbearing was complete- again she suggested sooner than later...of course she did say that with clearn margins, the AIS could be gone...or it could still be there (and of course leaving it there increases the risk of it turning into invasive cancer- and some women have AIS lower in the cervix and invasice cancer higher in the cervical canal). Needless to say, it is kind of a crap-shoot...

My husband and I choose to have a baby (thankfully we got pregnant fast....now 20 weeks along)...but it is a personal decision for each person to make...so far, my paps have been okay...If I had not gotten pregnant within six months they were possibly going to do another cone (since the first one was on the smaller side)....on oncologist said that frequent monitoring was important and she said that even if/when I have the hysterectomy because of the AIS, I still have to have paps every year...My gyn (who is following me, I will only see the onc if need be- I really trust my doc;s opinion and he refers me if he feels he needs to)...still recommends the hyster after I deliver....we tenatively have it scheduled for about 10 weeks after I deliver...it is hard not to get greedy and want to put it off and try for another one...but my doc and my husband both kind of discourage it...

Anyway, I wish you luck on your decision...from what I have read, the hysterectomy is still considere the standard of care...however, AIS is being diagnosed in younger women every day so I would bet that conservative treatment is on the rise as well, there just aren't any studies or anything out there yet to show that this is an alternative that is as "safe" as the hysterctomy...it was frustrating for me to do research on it because of the lack of concrete information...as it is, the doctors would rather remove the problem (ie: hysterectomy) than be wrong and have a woman have to go through treatments for invasive cancer at a potentially late stage when the problem could have been removed while it was still in situ...
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