Diagnosed with ' Invasive and in situ endocervical adenocarcinoma, HPV assocaited. very scared!

Hi everyone.
I am 41 years old female. Just last week I got diagnosed with adenocarcinoma of cervix. I read its a very aggressive and rare form of cancer. I have only had a leep and colposcopy done about 3 weeks ago that conformed my cancer. I have got my MRI and pet scan also done and now just waiting for results.
My pathological report of the biopsy says ‘Lymphovascular invasion is not identified’. I believe that means my doctor did not order a biopsy or checking of the lymph nodes? Can someone please tell me what does ‘not identified’ mean. Does it mean negative or they just dont know?

My symptoms were bleeding during sexual intecourse sometimes. It would just come and go but not heavy enough to wear a pad. I stopped having sex two months ago because of all this and I have not bled at all since then. Has anyone experienced that? Like diagnosed with cervical cancer but the bleeding stops?
I am quite sad and scared obviously but if anyone can answer me or share similar experience I would be very grateful.
Thank you!

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Hi @Mona1

I’m not sure what you are reading but adenocarcinoma is not a rare form of cervical cancer, and is generally treated in the same way as the more common squamous cell carcinoma. Other types of cervical cancer are more aggressive, so please stop scaring yourself!

I was diagnosed with stage 2b adenocarcinoma in 2018 and I’m still here.

The fact that lymphovascular invasion wasn’t identified suggests that this has not been picked up, but assume you had a biopsy taken which is how you were diagnosed with cancer? Your scans will give more information.

I know it’s all very scary at the moment, but try to keep calm until you know more, and please don’t use Google for answers. There are many ladies here who will help you through.

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So far this forum has been great compared to others. Women get back to me faster and its hope when i seepeople are replying. Yes @Lilypingu, you are right. My pathology report after my biopsy said that lymphvascular invasion wasn’t identified (it did not say positive or negative) which is why I am so confused!
I just finished my pet scan today and the results should be out soon. Doc appt about treatment is scheduled later this week.
Google is a double edged sword , I am mentally preparing myself for whats coming ahead but at the same time it is such a dark place. I find contradictory statements about the seriousness of anedocarcinoma at different times on google!

Google is not a doctor-it will show the worst case scenario for everything. If you don’t know what you’re looking for it’s not a good place to go in my opinion as you cannot diagnose yourself there.

The fact that lymphovascular invasion was not identified means that it was not found when they did the biopsy.

You really don’t know what might be coming up, so it’s difficult to prepare. You don’t yet know if your cancer is low stage where surgery is possible, or higher stage where it isn’t and honestly you can’t speculate right now or it will drive you crazy! Wait until your doctors confirm the scan results and make their decision.

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Yes dear thats why they call it a limbo. Thanks for straightening me up and thats why I come to this forum - To get answers from people like you who have been through this and know how to deal. Thanks again for the strong reminders. :slight_smile:

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Hi was initially diagnosed stage 1b1 adenocarcinoma. I had a hysterectomy and it was found to have microscopic disease to my parametrium. I then was staged 2b. I finished 5 rounds of chemo yesterday, and will finish my 25 rounds of radiation Friday. This is honestly the most difficult period of not knowing and waiting for results and a plan. Try to keep calm and stay off google!! I promise you I did the same and it was not a good place to find support.

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Hi @Kellybug221 Knowledge is power but also such a doomed place when we dont have real answers. I try to distract myself with work but every now and then come back to here or google to feel comforted and like I have some control and understanding.
I wish you all the best and its good though that they caught it so early. I know every woman is built different but can you share what were your signs and symptoms and how long before you were diagnosed did they start?
Very thankful.

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Hi @Mona1

I haven’t got adenocarcinoma but was diagnosed with squamous cell. Treatment is the same. I was similar to you, bleeding slightly after sex, but that was it. My biopsy from my colposcopy showed extensive lymphovascular Invasion present. However, my after having a hysterectomy almost 2 weeks ago, my consultant is still confident everything was contained in the cervix and will not need further treatment. Even if your results showed lymphovascular invasion was identified/present, its only a precursor, not a diagnosis. X

Looking back, I had vaginal discharge that I suppose was my only symptom. I had reported it and no one ever seemed concerned. I did not have pain nor bleeding. It was found on a routine Pap smear.

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I get it. Thank you so much for sharing your case :slight_smile: Please may I ask what was your staging? @Sarah1987

thank you for sharing !

It’s so hard to do, but trust in your team and try to take it day by day. this is much better support than google! These are real experiences.

Also, I am adenocarcinoma and well, and I was never led to believe that it’s rare and aggressive. So maybe take some relief in that

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After all my scans etc, my consultant said 1A2 at best, but couldnt confirm as i had lymphovascular invasion present. I am now waiting my results from the hysterectomy so still at best its 1A2, if they dont get clear margins from the hysterectomy, it will be staged higher. I should know by next week xx

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Thnaks for sharing Sarah! Yeah my margins were all positive. Did not come back clear however my biopsy did say lymph vascular invasion not identified. thats not the same as lymph nodes i know though. @Sarah1987

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No problem @Mona1. You would only know if you have clear margins once treatment is done. At present i would suggest staying off google, we all did it and will all say the same, it will only make you think the worst. By what you have said, it could be at early stages and they would always check for lymphovascular invasion which i believe yours have come back as none present, thats a good sign. The only thing you can do now is wait for the scan results and trust me, that is the hardest part. Try stay off google and ask questions here if you need to. Im not a medical professional and just going off my own experience to date but i totally catastraphised for 6 weeks from diagnosis to results and treatment plan and it had me in an awful way. If you can work, work, if you cant, take some time off to try relax until you know what your dealing with. Feel free to reach out at any stage xx

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Dear @Sarah 1987. I will always be here if you ever wananchat. Thank you for your consolation.Feels better to hear what you said. I have to learn to be more positive . Thank you so much!

I’m in my 2nd go-round with CC (mesonephric adenocarcinoma which IS very rare and aggressive…thus going from 1B2 in 2022 to stage 4 last october) and I still over-google and worry and check here and check Reddit. I never knew before how cancer puts so many questions in your head, so much uncertainty, but the community here helps remind me that I’m not the only one. Even if the answer is “don’t worry too much,” don’t let that stop you @Mona1 or anyone else from reaching out. We’re here for each other.

Hi love!!! I just got back from my very first consultancy. I have some answers but still not definitive. My gynac/oncologist saw my pathology report and my pet scan and is quite sure that I am at stage 3C1. It has spread to lymph node. He showed me the pet scan image. There was a line that was all green and lit up . I am not sure if its just one lymph node or many. He said he will not do any surgery but straight go to Radiation and Chemo. I will get radiation for everyday for 5 weeks and then chemo that is cisplatin once a week to enhance the chemo. Followed by 2 rounds pf brachytherapy.

I was in a shock! Because of the way I look and feel i did not expect this to be stage 3 plus at all! He has not yet seen my MRI report but he is quite certain of what he sees from the pet scan. I want to be hopeful but Iam sooo sooo scared!!!

@Kelizziek I know stage 4 sounds so scary. I am almost at stage 4. If it brings you any comfort mydoc said that cervical cancer is different from other cancers. A stage 4 pancreatic cancer is example very different. Stage 4 cancer as all my gynacs have said is very treatable. Hang in there girl!!!

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That’s the hope! We’re hanging in there together at least.

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