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    Old 11-10-2010, 01:49 PM   #1
    cestlavie
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    Found out adenocarcinoma is invasive

    I've been reading these boards for 2 weeks since my nightmare began. I don't even know how this works, but I need help to cope. You know the story-abnormal pap/hpv positive, colposcopy indicated adenocarcinoma in situ, cone biopsy and just received the news today that the cone showed invasive cancer. At each of those steps I was told things "looked good" not to worry, but I know that's the deal with adenocarcinoma. I'm 42 and have 2 young kids and am so scared. The gyn referred me to a gyn/oc who I will see tomorrow just to talk. They don't have a complete pathology report back yet. She knew I was agonizing so she asked the lab to look it over and they answered that it was invasive. I have no idea what else the report will show. The gyn was so not positive at all. I asked if she thought I would be alive in year and she said yes;yes to 2 years but no answer about 3!!!! I asked if she could have got all the bad cells with the cone and about the margins and she said it didn't matter. What matters is where it's traveled to and more tests are needed for that. I should also mention that after many normal paps, I waited 3 years for this one so now I feel so guilty. I also think I may have ignore symptoms-back pain, leg pain, frequent need to urinate, my period lasted a day longer last month. Everything points to late stage and I don't think I can handle this. Any advice, thoughts, comments would be so very very appreciative. Sad to say, most of what I know about AIS I learned from this board and not my gyn.

     
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    Old 11-10-2010, 06:25 PM   #2
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    Re: Found out adenocarcinoma is invasive

    cestlavie

    I think you should be addressing all your questions to the gyn oncologist. They are the one who really know. You really need to wait for that final pathology report. How many nodes where positive? Until you have this information, no one will be able to tell you the extent of your disease.
    I believe it will be suggested that you have a complete hysterectomy which is the treatment that is done first. Sometimes, the hysterectomy will take care of the problem, but you will need careful monitoring.
    Write all you questions down to bring to your appointment and write down the doctors responses to your questions. Some times it is a good idea to bring a second person to this appointment because you really only hear a small amount of information because you are upset and scared. This second person can usually hear everything that you missed and will help you fill in the blanks. They also make sure that you do not forget any of your questions and that the doctor answers all of your questions.
    Please let me know how you do at your appointment.
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    Old 11-10-2010, 08:07 PM   #3
    cestlavie
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    Re: Found out adenocarcinoma is invasive

    Thanks so much for replying. It makes me feel a little less alone. Right now, the only pathology report is coming from the cone biopsy. Nothing done on lymph nodes yet, but I'm sure that will come soon. I am bringing someone with me to my appointment tomorrow and all in the future. I would give anything for shread of good news. So far it has just been a parade of bad news and I don't thin it will ever end. I'll update after the appt. tomorrow

     
    Old 11-11-2010, 03:32 AM   #4
    pamsparkle
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    Re: Found out adenocarcinoma is invasive

    Cestlavie,

    I read your story & my heart is breaking for you. I know that its easy for me to say but please wait until you have all the facts (i.e. after your exam with the gyn/onc). You need to have some hope, your kids are counting on you!

    Unfortunately, I don't have much advice to offer but I can lend support.

    Please stay strong & keep us informed.

    Last edited by pamsparkle; 11-11-2010 at 03:33 AM. Reason: typos

     
    Old 11-11-2010, 03:52 PM   #5
    cestlavie
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    Re: Found out adenocarcinoma is invasive

    Life can be so amazing. I first posted on this site seeking advice. Now I am going to give advice: If you ever find yourself in the situation I am in, see an gyn. oncologist right away! I met with the oncologist today and what a difference a day can make! Yes, I have invasive adenocarcinoma of the cervix, but he thinks I am in stage 1. He was very factual and confident when he talked. A total radical hysterectomy is what he recommends. I do have to have a PET scan and there could be other bumps in the road, but he had a plan for every situation. Turns out, I actually had a pap test 2 years ago and it was perfectly clear. So scary that you can go from nothing to invasive cancer in less than 2 years! Although adenocarcinoma is rare, an oncologist is so versed in it. I really think my gyn was totally stunned by the situation. She sees tons of abnormal paps, a few AIS, but I think I was only one of a couple invasive cases she has discovered in a 20 year career. I wish I had gone to a gyn onc right after the AIS was diagnosed. Thanks for the thoughts and prayers. Hope has returned and I may actually get a wink of sleep tonight

     
    Old 11-11-2010, 04:47 PM   #6
    pamsparkle
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    Re: Found out adenocarcinoma is invasive

    I am so glad you are feeling more optimistic. Its too bad the gyno jumped the gun a bit with her opinion. Feels like a huge weight has been lifted, right?

    I got a bit of relief yesterday myself. I had a AGC Pap a few weeks ago. Everything I read on the Internet said it is a serious finding.

    I had a nice long talk with my new gyno both before & after my colpo - she said my cells were AGC - favor reactive (not neoplastic). She said the chance of there being pre-cancerous or cancerous condition is pretty small. I feel like I can breath again, for now. My test results from the biopsies will be in a couple days.

    Best of luck in your fight ahead! Give your kids a big hug!

     
    Old 11-11-2010, 06:25 PM   #7
    cestlavie
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    Re: Found out adenocarcinoma is invasive

    Thanks for you support and great thoughts. Yes, I feel a weight has been lifted. My baby turns 10 next week and I had these awful feelings that I would never live to see him play with his frogs next summer. I send prayers to you for continued great news. Watch out for those glandular cells though. They are nasty little buggers. I too was told that everything looked great, nothing to worry about, don't loose any sleep over this right up until my diagnosis of invasive cancer this week. It took everyone by surprise. I don't mean to scare you, but if you test positive for HPV and have any atypical glandular cells, be very vigilant in your care. I foolishly thought cervical cancer was a very slow moving disease that everyone can catch and beat. I'm so glad there is a HPV vaccine available for girls today. First on my lit of things to do is get it for my own daughter. My parents cried for two days over my diagnosis. I hope not to feel that pain. All the best to you

     
    Old 11-11-2010, 06:37 PM   #8
    pamsparkle
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    Re: Found out adenocarcinoma is invasive

    I've never had an HPV test until now since I've been monogomous for so long I assume they never thought it necessary. The results will be here soon.

    My gyno said if I am HPV, I will have paps every 3 months for a while. if not, and everything else is negative, I go back to yearly.

    Also, she didn't see any areas to biopsy around the cervix - the biopsies were in the endocervical canal & the uterus.

    I did not tell anyone except my husband about my bad pap. Although my parents are no longer alive, my older sisters would have been just as concerned.

    When I learned of this test result a few weeks ago, I made a promise to myself that if everything is free & clear, I will make a nice fat donation to a local charity for the holiday season. I am happily considering how to distribute the money!

    Last edited by pamsparkle; 11-11-2010 at 06:38 PM.

     
    Old 11-11-2010, 08:32 PM   #9
    paticake35
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    Re: Found out adenocarcinoma is invasive

    It's funny, Pam, I thought the same thing when they offered it to me a few years ago. I said no because my insurance wouldn't have paid for it and I figured why bother?

     
    Old 11-11-2010, 09:05 PM   #10
    cestlavie
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    Re: Found out adenocarcinoma is invasive

    I found it odd when my dr had a HPV test included with my pap labs. I didn't even know such a thing existed. She said they just started doing it a couple of years ago. I shrugged it off a didn't give it a thought. When she called to say my pap showed AGUS and I was HPV positive I was floored. I have been in a monogomous relationship for over 20 years. Prior to that, I only had a couple of other relationships. I don't relate to a single one of the HPV risk factors and I ended up with the worst of the worst. Go figure. My gyn said there is a lot that is not known about the HPV virus. Glandular cells changes are very often missed by pap tests and colposcopy. In fact, my gyn said I was so lucky that my AIS was even picked up by a colposcopy. Through my pap, colposcopy and even cone biopsy no one saw anything that indicated any sort of a problem with my cervix. It looked great, but that's because glandular cells are different than squamous cells. Again, not to scare anyone, but I was completely unaware. Had I known this existed, I may not have ended up with an invasive cancer.

     
    Old 11-12-2010, 04:03 AM   #11
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    Re: Found out adenocarcinoma is invasive

    It is scary out there! I think HPV should be a standard test for every woman at least periodically. Even someone like me who has been monogamous for 38 years still has those fears. If I am found to be HPV-, I will be able to breath a bit easier.

    In fact, there should be more public knowledge re: the dangers of HPV. You hear so much about all these other cancers but not much about gynecological cancers - many of which could be far less dangerous if women knew more about HPV.

    I have a friend who had almost died from a gyno cancer many years before we met. She says there is a hierarchy of cancers as far as public attitude. For example, cancers that results from 'bad behaviors' such as lung (with smoking) and gyn cancers (with sex) are lower on the ladder than something like breast cancer that has no known behavioral causes. Just her opinion.

     
    Old 11-12-2010, 07:19 AM   #12
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    Re: Found out adenocarcinoma is invasive

    cestlavie

    I am happy to hear the positive tone in your last post. Please keep me to date on your progress. Have a great weekend. (cleveland did a nice job last sunday against my patriots)
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    Old 11-15-2010, 02:20 PM   #13
    Dayanasmomma
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    Re: Found out adenocarcinoma is invasive

    Cest- I am going through the EXACT same thing as you. Just got results from my cold knife conization that I am stage IA1 with adenocarcinoma. I am trying to make the decision on whether I want to risk it and try to have a baby quickly before a hyserectomy or just go ahead and have it. I have an 11 year old and feel the need to think about being here for her but I am also recently married and my new husband would love to have a child..as would I. They said that the glandular cancer has very little studies on it and cant really give me any definitave idea on how safe it would be to wait. I have scheduled a second opinion at the request of my oncologist because she said she wants me to have several opinions before i make a choice. This is so stressful..I never thought I would be 30 and making these decisions! What are you looking at in the way of treatment?

     
    Old 11-15-2010, 05:20 PM   #14
    cestlavie
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    Re: Found out adenocarcinoma is invasive

    Dy-My heart goes out to you. This is really so awful. I was feeling good about things, but now I'm back down in my fog. Probably because I have a PET scan in 2 days. I can't even bare getting more test results. My onc. thought I could be a 1a from the pathology report from the cone but really the PET scan is a definitive test. Did you have that yet? That could help with your decision. If there is anything out there or in there, the PET scan will find it. As long as there is no other new situation found, I'm scheduled for a total radical vaginal hysterectomy. But-I'm 42, if I were younger perhaps they would have sought other options. It's hard to see that part of your life end, but realistically I wasn't planning on having other kids. I too am getting the feeling a lot isn't known about adenocarcinoma of the cervix. Definitely my gyn seemed very freaked out by it. But, my onc was different. My gyn hammered in about the skip lesions, but the onc said-"it can do that sometimes". My advice is get a PET scan and another opinion. If there is no evidence of cancer in other places, do what you can to preserve your fertility and have another child. My kids are the joy of my life. I really wish I had more. If I were younger, the hysterectomy would be my last option. I wish you SO much good news and most of all peace in what is such a stressful time. Let me know how things work out.

     
    Old 11-15-2010, 09:30 PM   #15
    Dayanasmomma
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    Re: Found out adenocarcinoma is invasive

    I havent even heard about the PET scan. I will definatly ask my doc about it. I have thought about a trechlectomy but not a lot of dr.s do it. Yeah my Dr. said there havent been a lot of studies on Adenocarcinoma so its hard to make choices because we cant look to data to get an idea of how things could turn out...This is crazy. Everyone keeps telling me congrats for ONLY having stage IA1...but seriously its hard for me to hear that since it doesnt feel like I should be celebrating. Its cancer!! Its nice to talk to someone who can understand.

     
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