At least in situ adenocarcinoma from coposcopy - Cancer: Cervical & Ovarian Message Board

Hopefull_2 · 08-18-2006, 08:36 AM

Hi I am 29 years old and have not yet had children. I am getting married next May (2007). I want to have children. My finace has hpv and I was diagnosed with it a year ago. This past year I had pain at my cervix during intercourse and a couple of time bleeding between preiods. But I had never had an abnormal pap till July of this year, it was ASCUS. My doctor did a colposcopy b/c I have hpv (the high risk kind). She took 3 samples 6 O'clock, 12 O'clock and she sampled the cannal. The canal came back clear, the 6 O'clock came back ASCUS, and the 12 O'clock came back "at least in situ adenocarcinoma". I am scheduled next week to meet with a gynological oncologist, and my OB reccomends a cone biopbsy. I know of one person who had the same diagnosis who had the cone and edges were clear and she went on to have a child succesfully. Is there anyone else out there with my diagnosis who can share with me they're experience or advice. I appreciate it.

ktbee · 08-18-2006, 10:48 AM

Hi Hopefull,

I was diagnosed with adenocarcinoma in situ in May; it was surprisingly found in the tissue that was removed in my cold-knife cone (to treat HSIL). My margins just barely cleared and I'm going in to get my first follow-up ecc in 2 weeks. I'm meeting with a great doctor out here in San Francisco who has done a ton of research on HPV, cervical pre-cancer and cancer. She's currently in the process of trying to devise a cervical cancer/pre-cancer screening test that is more accurate than the pap smear.

Anyway, I plan on asking her a TON of questions. I'm only 26 and, like you, preserving my fertility is very important to me. I have also read a few stories of women having the cone to treat AIS, then going on to deliver a child...I'm hoping this is a route I can also take. AIS is a scary diagnosis because there's no clear treatment plan and detection is really difficult.

I'll let you know what my doctor tells me. If there are any specific questions you would like me to ask my doc, let me know. Something I've been reading up on recently is the option of trachelectomy- removing the cervix only and keeping the uterus (so you can still carry a child). This procedure is fairly new in the US and even with it, there's a risk of not being able to carry your child to term. If my doctor recommends hysterectomy, I'd be interested in seeing if I'm a good candidate for trachelectomy.

The cone biopsy you'll be getting is the perfect next step for you. Please let me know how everything goes.

Best,
Katie

Hopefull_2 · 08-18-2006, 12:29 PM

Hi Katie,

Thank you for replying and sharing your personal story with me. Your very lucky to have a such a great doctor. And I am very happy to hear that your edges were clear, that is great news. What is an ecc? I was just thinking that they need to come up with a more effective method of detecting cervical cancer then just the pap smear since its such a subjective sampling. I think all women should be tested for HPV and if it is the High risk type the protocol would be further investigation into the cervical tissue. I am so glad your doctor is looking into that.

I have also been wondering lately if its possible that more women then we realize are developing cervical cancer because of HPV and its curing on its own before its caught. Its just seems weird to me that my paps up till now have all been normal. I have just known a lot of women who have had irregular pap results (like mine ascus) and they just did follow ups later on which were fine. If we had not known that I had HPV (I found out a year ago that I had HPV) I wouldn't have had the Colposcopy and I wouldn't have known about the cancer. I would have probablly just had to repeat the pap in 6 months.

The big question I have is if the cone comes out clear how do they know the rest of the tissue further up and into the uterus is ok? I plan to ask my doctor that next week friday when I see him. I would have preferred a female oncologist, but I guess there aren't as many gynecologist/oncologists in this area.

I have heard of trachelectomy, I read about it as well. However, from what you have told me its sounds like you are stage 0, which I thought was just treated with the cone and followup paps every three months.

One quesiton I have for you is did you notice prior to your diagnosis any pain in your cervix or bleeding mid cycle? I had noticed this a couple of times in the past year. I would get a light flow around the time I should have been ovulating mid cycle and my cervix hurt during intercourse. Also did they give you a choice between a cold knife and a laser removal of the cone? I think they have suggested the laser for me I wonder if you had any advice on that?

I wish you lots of luck! Please keep me posted! I hope ten years from now we both have kids and can look back on this time a little wiser and thankful to have gotten through it able to share our stories with other women.

ktbee · 08-18-2006, 04:34 PM

Hello again,

Ecc stands for endocervical curretage; this is where a doctor scrapes cells from the inner portion of the cervix. The thing is, I had an ecc before my conization surgery and it came up benign- meaning, it didn't catch the AIS...that's why we were all so shocked when the AIS reared it's head in the cervical tissue that was removed.

You ask- how do they know that there's not more cancer higher in the cervix? They don't

This is why Adecocarcinoma in situ is traditionally treated with hysterectomy. It's difficult to screen for and even if they remove one bit of it completely (with clear margins), there's no guarantee that it's not hiding in other areas (which is sometimes the case with AIS).

As far as women possibly developing cancer and not ever knowing it because it goes away- if it's cancer, it's not going away...but it is possible for women to have HPV, then have it clear without ever knowing it. It's also possible for women to develop precancerous changes like LSIL and then have it go back to normal without ever knowing it. Also, doctors won't always treat CIN I or II because, very often, it does return to normal.

I've always had normal annual paps, as well. Then SURPRISE!!- I seemed to develop CIS and AIS in an instant. There have been quite a few women on this board who have had similar experiences.

I actually did have some irregular bleeding just prior to my first abnormal pap (back in Oct. 05) and there was also bleeding after intercourse, but never any pain. My doctor thought it was just because I had recently gone off birth control pills, so she put me back on. I'm going to ask my new onc if I shoulg go off the pill again because I've read that long-term use of birth control pills is considered a risk factor for the development of AIS.

My gyn told me that he prefered to treat my HSIL with a cold-knife cone and I didn't even think to argue with him. It's funny, because he usually treats women in my situation with LEEP, but later he said he had a "feeling" that a cold-knife cone was the better option for me(?). He explained that he wanted to make sure he got a good, clean tissue sample- the cold-knife conization allows this. Sometimes the LEEP with destroy the tissue and make it difficult to see exactly what's in it. The LEEP is good because it can be done with local rather than general anaesthesia, and the laser cauterizes the edges of the tissue often killing any bad cells if they extend close to the margins. Also, there's usually little, if any, bleeding after the LEEP. Personally, I'm glad my doc did the cold-knife because we all feel confident of what exactly was there, and that it's out! If your doctor wants to do laser, though, I think that should be just fine.

I'll definitely keep you posted. Please keep me up to date on any developments with you, too! I'm wishing you the best and keeping you in my prayers

Take care,
Katie

Hopefull_2 · 08-19-2006, 05:36 AM

Hey Katie,

Thanks for all the good information. It is SO helpful to talk with someone else who is going through the exact same thing. Last night I slept straight through the night for the first time since finding out my diagnosis on Wednesday. I had been relying on unisom the last two nights because my brain kept replaying this whole thing when I was trying to fall asleep.

I have been meditating alot trying to figure out what all this meens. I also tried visualizing a healthy cervix and dead cancer cells. I do believe with all my heart that we are what we think. For the past 3-4 months I kept saying there is something wrong down there, when I was having all those weird symptoms.

I am going to Vitamin World this morning to pick up Folic Acid, Pycnogenol, and Proflavanol. Also I am going to try to find pure Vit E to try what that other person on the site reccomended ( I forget her name). I have the book "Women's Bodies Women's Wisdom" by Christine Northrup. She is a OBGYN who started a practice in Maine 25 years ago and revalutionized the way women view them selves. Have you heard of her? Any way, she had reccomended 145 mg 3 times a day of Pycnogenol (pine bark extract) and about the same of the Proflavnol (which I think is Grape seed extract). She recommended that for 1 week and then dropping it back to 20 mg 3 times a day. She also recommended 5 mg of Folic Acid a day. These are antioxidants (except the folic acid), but I guess more powerful ones.

Well I keep focusing on my sisters friend who had our same diagnosis and had a cone and has been clear since (five years) and had a child 3 years ago. My (soon to be) mother-in-law also had a hysterectomy after she had children, I need to talk to her more.

Well Katie I wish you a peaceful weekend free from worry, that is what I am aiming for. I watched a funny movie last night (barnyard) it really helped me forget for a while. When is your ecc again? I'll keep you in my prayers also. God bless you! Sarah