I was diagnosed with adenocarcinoma in situ with the understanding that they were concerned about the amount of inflamation that was seen in the biopsy. They are going to do a cold knife cone biopsy in a little over a week. I am 26 and I have had two previous normal pap smears before this abnormal one. I came in to the doctor because I was having bleeding in between periods and I had pain and bleeding during intercourse. That is when they saw the abnormal pap and I had a colposcopy done. It's already been a week since I got the cancer diagnosis and I have to wait another week to get the cone biopsy. I'm extremely worried that it has already spread because I came in with these symptoms. It seems like they should be able to do something to see if the cancer is more advanced rather than just waiting for the cone biopsy. Has anyone had an experience like this?
Thank you in advance for any advice. I am quite anxious.
Oh honey :( I can only imagine how worried you must be feeling. I was of the understanding the 'cis' was classed at grade 0 cancer as it's so early the cells have literally just started breaking through. I might be wrong but from what I've seen it is very treatable and often just a cone biopsy will take it all away. Did you have punch biopsies that diagnosed this? Xxxx
I've just been researching and it seems adenocarcinoma in situ is still classed as a precancer althoughsome of the abnormal cells have become cancerous. The cells are still contained to just the surface. If I'm wrong please somebody correct me but that's what it says on cancer websites xxx
sorry to hear you're going through so much stress. It's not surprising though, the waiting for things to happen is often the hardest part.
As Harri said though, I think it's a really early stage diagnosis so hopefully they'll give you the cone and this will all just be a horrible memory. Just remember we're here if you need us xxx
Thank you for your replies and kind thoughts. Yeah I am really hoping it is in situ and has not spread. I am just so worried because after reading online it seems that the symptoms I have don't occur until a later stage of the cancer once it has become invasive. I am wondering if one of you or someone you know may have had these symptoms when the cancer was in situ?
I'm at the stage of waiting for lletz results although my three punch biopsies showed cin3 nothing more. I have heard of lots of ladies on here with much more symptoms than you and they've only had CIN, stay positive Hun. What happens now? Was it lletz or punch biopsy that showed the CIS? X
They did the biopsy and an endocervical curettage because the pap showed abnormal glandular cells and that is when they found the cancerous cells. My doctor's nurse called today and I have my pre op appointment with my doctor tomorrow. They are trying to see if they can fit my cone biopsy in this week but their schedule at the surgery center is busy. It's nice to think that they are trying to speed things up. The waiting really is torture. I never had the lletz procedure done. So you are waiting for the results of that then what will happen? Does that procedure get rid of the abnormal cells and then you need to come in frequently for paps to keep an eye on it?
It sounds like they are really taking care of you. I know how scary it is and how you must be feeling but what you have is so so early, even if it gets upgraded to CC it will probably onlybe stage 1a1/1b1 which are also very easy to treat! As long as they think they've got it alland it doesnt show anything more serious then I'm back to 6monthly checks. very worrying time but I just keep thinking to myself the pap and 3biopsies didnt show any cancer so hopefully itllbe ok :( xxx
After a pap and 3 biopsies and no cancer I think you can be optimistic :) The pathologist who looked at my pap already seemed concerned and that was before the biopsy. I bet they are being cautious with you and making sure they see everything and then you will have the frequent paps and they will catch anything early.
Hi there, the waiting is awful. I was diagnosed on the 29th of Jan 2014, my biopsy was taken on the 19th. My actual treatment didn't start until March 19tn. In between that time I had scans, and examinations. It feels like a long time, but I don't think you should be worrying. It takes a long to spread so please try not to worry :-) They have to get everything just right to give you your individual treatment.
Colposcopy 19th Jan 2014
Cancer of whomb diagnosed 29th Jan
MRI changes diagnosis to cervical
PET/CT confirms lymph node involvement
Internal under GA confirms CC stage llb
28 external radiotherapy
5 cisplatin chemotherapy
Treatment finished May 6th
PET/CT 11th August
MRI 13th August
How have you been feeling today? Xxx
I am doing alright. Today I met my doctor who will be doing the cone biopsy and she was very comforting. How are you?
Did you get more information today? Well done I'm glad you're feeling ok. Yeah I'm alright, haven't heard anything yet xxx
Yeah she let me ask all my questions and she told me about the surgery. She also told me about what the pathologist saw in the biopsy. I guess the cells were very inflamed so he couldn't say for certain that the cancerous cells were only on the surface but that he believed it was in situ. I've been put on antibiotics to get the inflammation to go down so the the cone biopsy will be clear.
See my history below - looks like I had a similar diagnosis. 'Insitu' basically means 'at the source' - or at it's original site, so suggests it is small, and not gone anywhere else.
I didn't have any symptoms, and my consultant was amazed at that... symptoms are not a signal that it has grown/invaded elsewhere. My consultant expected that would have had symptoms and mine was only very small.
Try not to worry about the delay CC is one of the slowest growing cancers there are - I waited around a month for my surgery, and went on holiday with my frield whilst I was waiting!
I wish you the best of luck, I know how scary it is, and I hope that soon it will all feel like a bad dream - that's how it feels for me!
I hope it's ok I reply; I know it's been a while since you post...
I am 26, today I was diagnosed with adenocarcinoma in situ with accompanying l-cgin... I'm getting a cone biopsy next week (i also have EDS so a bit nervous about anaesthesia on top of everything else)
I have a whole list of accompanying symptoms and am really nervous and it seems you had a similar experience; I was just wondering if how it all went, how are you?
Very best wishes
Hi all, I had the same diagnosis of AIS after an abnormal pap at 33 (right before my 34th birthday!) and colposcopy. My cone biopsy was scheduled over a month after the results of the colposcopy. I am going in next Tuesday and pretty scared. Especially the news that I will need a hysterectomy after I'm "done having children" (when I haven't even STARTED having them yet) is bumming me out. All of a sudden my life feels like a race against time. I hope the OP had a positive result!
Sounds like we're in a very similar situation. Last July I was diagnosed with AIS, after an abnormal smear and LETZ procedure. I had a cone biopsy and the margins came back clear, but was told exactly the same as you about needing a hysterectomy after I'm done with having children! Likewise I'm 33 and haven't started but always dreamed of having a family.
I'm due my six month check and I'm so scared, and bummed out! Like you I feel like life is a race against time.
Anyway I just want to say good luck with your cone biopsy, I was very lucky with mine and didn't suffer too bad from pain and recovered very quickly so I'm hoping it's the same for you and you get clear margins! If you need anyone to rant at or chat to, feel free to get in touch.
Hi Ladies, I've just discovered I have AIS and other CIN II/III cells after a LEEP/LLETZ procedure. The dr also said preferred route is a hysterectomy but I've been reading a lot about just doing a conization instead and doing extensive follow up. I fortunateley do have two kids already and feel that I am probably done but I am concerned about losing my uterus. There seem to be side effects from a hysterectomy (pelivc floor issues, hormone imbalance, orgasm difficulties) that I do not want to have to have unless its really necessary. There is a lot of research out there showing that a conservative approach with very agressive follow up is a fair first approach.
Yahsanna, how are you feeling?? I will probably have the CKC next week.
Alba, were your margins clear on the LLETZ? or just on the cone biopsy? My margins were clear on my LEEP but from what I've read AIS are less predictable and can show up in other places.
UGH.. I always heard cervical cancer is preventable if I get annual paps.. Hysterectomy is a pretty serious preventions. SUCKS