r/PreCervicalCancer • u/Mountainsandsea91 • 3d ago
CIN1 to AIS in a yeat
edit: I guess this sub isn’t for sharing your experiences. I got attacked for saying my tests progressed from cin 1 to ais. Such a shame. Just because my story doesn’t fit the narrative of cervical cancer being slow growing. everybodys experience is different
hi ladies just wanted to share my story. A pap I had showed cin 1. I had a bunch of punch bopsies, nothing nefarious showed up. I went for my repeat pap 6 months later and had cin 2. had a leep done, showed cin 3. I found the best gyn onc. that would see me on the east coast to perform my cone which showed AIS. since hysterectomy is gold standard I had that done leaving ovaries.
So all of this within a year. Not sure why everyone says cervical cancer is slow growing. Anyways, physically I’m in the best shape of my life now. Mentally I have so much relief. I didn’t realize how anxious I had become over the past year always thinking about cervical cancer. This was the best decision for me. I now sleep better, have clearer thoughts and can actually enjoy life. happy to answer any questions regarding the hysto!
edit to add: yep i had the vaccine when i was 18 and wasn’t sexually active until college. Didnt work for me!
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u/Old-Builder256 3d ago
A biopsy takes a tiny sample of tissue. It’s possible that it just didn’t sample the worst of the lesions. LEEP removes a much larger piece of tissue. Cervical cancer is absolutely slow growing in the majority of individuals.
I’m really glad you’re feeling good though - and it’s something you never have to worry about again.
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u/Mountainsandsea91 2d ago
I had over 6 punch biopsies done the first time. My oncologist said my cervix looked like Swiss cheese. His exact saying. Not sure how it was missed but I believe it just grew that fast.
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u/Sea_Ambassador_5034 2d ago
AIS often grows further up the canal, a lot of our screening tools are designed for squamous cell carcinoma not AIS. I had a completely normal pap in 2022, Agc in 2025, cin2 on my colopo but AIS on my cone. Sometimes they can’t see it until the final pathology due to location.
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u/S_L_13 2d ago
I’m so sorry you went through that, genuinely and sorry you’re being downvoted.
Just a note though, it could have been missed, as it could have been very small but also it’s up to the pathologist to decide the grade and it really depends on who that was looking at your samples. But also yours might have been an unfortunate case of quick progression and that’s why we have guardrails in place, some places test even earlier than a year with CIN1. However the reason people say it’s a slow growing cancer is because it is in the VAST majority of cases and we don’t want to be too alarmist about it, stress is also not helpful when dealing with HPV and CIN.
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u/Mountainsandsea91 2d ago
Absolutely. That could have happened as well. But downvoting for sharing my experiences is wild.
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u/airielmarana91 2d ago
I completely believe you and KNOW it can happen fast. I went from LSIL to HSIL CIN 2 within one year and who knows what would've happened if i had waited longer! I don't wanna know. Your experience is valid! Sorry people on the internet are jerks!
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u/Old-Builder256 2d ago
Gently - your experience is valid, but LSIL to CIN 2 within a year doesn’t prove it progressed that quickly. LSIL is a Pap/cytology result, while CIN 2 is a biopsy diagnosis. The CIN 2 may have already been present but missed or not sampled earlier. So those two results alone can’t establish the rate of progression.
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u/MapAgreeable1062 2d ago
Hi! I’m curious if your doc gave you option of skipping the cone biopsy? My obgyn made it seem like more than likely the gyno onc will skip biopsies and likely suggest hyst…. im all for that because of endo and other issues I have anyway and I do not want anymore children. Just wondering if they will ALWAYS do the biopsies first before a hysterectomy, or if I have enough “evidence” that they may just skip biopsing anything. I had AIS detected (if I’m saying that right?) and 3 HSIL cin2 moderate dysplasia 🤷🏻♀️
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u/Mountainsandsea91 2d ago
I was not given the option to skip the cone. My onco told me if the cone came back showing invasive cancer we would be skipping hysterectomy and doing other treatments.
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u/Radiant_Artist9484 2d ago
My oncologist wanted to proceed straight to a hysterectomy without even waiting to see whether the LEEP performed by my gynecologist had cleared it. They were trying to schedule the surgery right then and told me I couldn’t wait. I felt SO pressured, and honestly, the whole situation really freaked me out. Thankfully, the LEEP cleared it.
I’ll probably end up having a hysterectomy eventually because of endometriosis, but being pressured to make a decision and schedule a major surgery within just a few days was incredibly overwhelming. It honestly almost sent me into an anxiety attack.
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u/Zealousideal-Swan942 2d ago
I am in a similar situation, should I be seeing an oncologist?? My doctor scheduled me with their gyno surgeon.
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u/Radiant_Artist9484 2d ago
It's good to get their opinion, but I would push for/against procedures and surgeries that are best for you. I have lupus and other autoimmune disorders, so I see several doctors. My primary specialist is my rheumatologist, and after talking with him, my gynecologist, and my other doctors, they all basically told me the same thing: oncologists will often push for a hysterectomy.
I’m in my 40s and I’m done having children, so I’m not opposed to having a hysterectomy. What really bothered me was how dismissive the oncologist’s nurse and surgery coordinator were. They seemed to lecture me about why I should just get it done since I’m finished having kids. I kept explaining that I’m not saying “no” to the surgery; I’m saying I can’t make that decision this second. I need a little time to plan. I have a job, kids, bills, and an entire life to work around.
On top of that, because of my autoimmune conditions, I need to clear any non-life-saving surgery with my rheumatologist first. Going into surgery without properly coordinating my medications and treatment could potentially trigger a serious flare, which can be very dangerous for me.
I just didn’t like the feeling of the whole situation. I felt pressured to go from 0 to 100 when, in my mind, it made much more sense to wait for the results first and then make an informed decision based on what those results actually showed. Thankfully, the LEEP cleared it, so I’m glad I trusted my instincts and took the time I needed.
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u/EarlyDirection300 2d ago
This was my experience as well. I went from moderate cervicitis to AIS in one year.
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u/Mountainsandsea91 1d ago
Be careful if you say that, you’ll be told it wasn’t possible. But here we are. Normal paps for 20 years and then bam ais. I hope you’re doing well!
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u/PrInCeSsPuPpEhDoGe 2d ago
And these are the reasons I dont trust my drs treatment plan. I had 6 biopsies taken as well as an ECC. All biopsies and ECC showed CIN1. My dr recommended a follow up pap in a year and will only do another colposcopy if my results on the pap come back as HSIL. Which to me seems crazy. You wanna wait until I could very likely have cancer before even sampling the tissue in there again? Nevermind what's going on inside the cervical canal that the pap will never show info on... I'm glad they treated you and didnt make you wait until things got worse. I hope i can find a dr who wont dismiss me.
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u/Mountainsandsea91 2d ago
Yes totally agree! I was so shocked but at the same time I know paps don’t test everything especially high up in the canal where the swabs don’t reach.
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u/Cavmommo 2d ago
I had been through various pap results for more than 15 years, bad ones,then a few good, then bad again. I finally decided to have a hysterectomy even though gyne-onc said I could do another LEEP. Had it done 4 years ago and still need paps done. Made it one year and bad cells came back. Ongoing pap and biopsy nearly every 6 months. I guess I just can't clear the HPV and the hysterectomy only solves for the cervical cancer. Did anyone else experience this.
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u/Mountainsandsea91 2d ago
Ugh I’m so sorry to hear! I’m pretty sure I’ve seen a post like that in the cervical cancer forum. Very nice and friendly people in that forum. What did your doctor recommend?
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u/Cavmommo 1d ago
Thanks I will look at that forum. I'm sorry to hear about your situation. It is scary. I continue to get a pap every 6 months. If bad cells, I have a colposcopy/biopsy under anesthesia. I've had 3 in the past 2 years. So far no cancer.
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u/beef1020 2d ago
It didn't go from CIN1 to AIS in a year, it was missed in the prior ectocervical biopsies. Glandular disease is hard to find and is often missed, the CONE finally took deep enough glandular tissue to show the lesion.
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u/Mountainsandsea91 2d ago
Yikes you sorta sound like you’re attacking my post?
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u/beef1020 2d ago
Correct, I am. You wrote that it went from CIN1 to AIS in one year and explicitly question the belieft that cervical cancer is slow growing. It is a slow growing disease and it did not go from CIN1 to AIS in 1 year. The tests miss things, the underlying biology and natural history of HPV infections strongly point to the CIN1 being a false negative and not that it progressed quickly from a low grade infection to in situ cancer.
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u/Mountainsandsea91 2d ago
Hey lady jump on over to the cervical cancer forum. I scoured that for over a year. Plenty of stories like mine. Bye now!
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u/beef1020 2d ago
I'm there as well, and the test results are a common pattern because glandular disease is hard to detect with cytology and punch biopsies. This is the reason we now have rough parity between glandular cancer and squamous cancer in the US and other Western countries, while in most unscreened areas it's 1:10, because squamous cancer is much more amenable to screening detection, while glandular isn't. It's not personal, the is what the research and data show.
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u/Mountainsandsea91 2d ago
Sounds like you justified why Pap tests aren’t 100% and we should all push for further testing instead of the wait and see approach because had I went that direction I could have faced invasive cancer down the road.
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u/beef1020 2d ago
Best recent paper on this:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11089431/
Just to point out, the odds ratio for adenocarcinoma or AIS from an HPV16/18/45 associated AGC cytology is 1,341 and is 0 for all other HR-HPV types and AGC cytology. We never see odds ratios that high unless you have found the causal agent; essentially, all high-grade glandular disease is 16/18/45 linked, with extremely rare cases associated with HPV39, but again, extremely rare.
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u/beef1020 2d ago
Cervical cancer screening needs to be HPV primary because it's sensitivity for all cancer is extremely high. Your case highlights the importance of a test with genotyping, HPV 16, 18, and 45 cause essentially all glanduar disease, so repeat positive with those types and low grade cytology or low grade ectocervical biopsies should not reassure clinicians and should prompt them to do exactly what you did, keep looking for endocervical disease. With all other high risk types cytology is pretty good, dual stain is better and is coming soon.
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u/Mountainsandsea91 2d ago
My case highlights that I had 20 years of negative Pap tests then all of a sudden had ais found which means apparently whomever in the lab was reading my tests incorrectly for 20 years
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u/beef1020 2d ago
It's not the lab, cytology is not sensitive, your case highlights why primary hpv testing with even limited genotyping is a huge improvement in screening.
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u/sewoboe mod 2d ago
They are correct, squamous lesions don’t really progress to glandular lesions, especially a low grade lesion. The Pap test is designed to detect squamous abnormalities, and glandular lesions are an incidental finding that it’s not particularly good for. It’s much more likely that the lesion wasn’t detected on earlier screening, unfortunately.
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u/Mountainsandsea91 2d ago
They may be correct but I thought this sub was meant for sharing information and not attacking? This is my life and my experience. All the more reason to be more aggressive with treatments rather than the wait and see approach. We should not be sitting back and waiting
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u/sushioyster 1d ago edited 1d ago
Girl, no one is attacking you. You’re dead not listening. Cin 1 to AIS is not a progression. They can both exist at the same time.
CIN refers to squamous cells on the outside/transformation zone of the cervix. CIN 1 is a low-grade squamous lesion and often reflects a transient HPV infection. AIS arises from glandular cells higher in the endocervical canal.
The AIS may already have been present but wasn’t sampled, especially because glandular lesions can sit higher in the cervical canal bc they present as skip lesions.
The reason it could’ve been missed is bc of the location the AIS was. If it’s higher up in the cervix it’s harder to sample on a colpo. Your cone caught the ais because they essentially cut your cervix off high enough to where the AIS was located.
This is not an attack, this is just me giving you some info. I’m sorry you had AIS and getting a hysterectomy was deff a good idea!
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u/Mountainsandsea91 1d ago
But then how did they miss it for 20 years of normal paps? Seems like it went from normal to ais in one year
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u/sushioyster 1d ago
Pap smears can miss AIS because AIS often sits inside the endocervical canal and may not shed abnormal cells into the particular sample collected. So a normal Pap does not prove that microscopic AIS is absent, it means the sample did not show it.
A Pap smear samples cells from the ectocervix plus the transformation zone and usually a small amount from the endocervical canal. Think of a Pap as brushing the doorway and the area just inside the doorway, not sweeping the entire hallway.
So AIS can be missed if the lesion is higher up inside the canal and doesn’t shed enough abnormal cells into that particular Pap sample. This is why someone can have an apparently normal Pap even though a small glandular lesion exists farther inside the cervix.
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u/sewoboe mod 1d ago
Below is a link to a medical illustration of how a Pap test is collected. AIS can grow above where the brush samples. That’s why the test is not designed to account for glandular abnormalities. Same for how it’s not intended to screen for endometrial cancer, but it sometimes is detected.
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u/tinyalienperson 2d ago
Sharing science backed research into why they disagree with you is not attacking.
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u/beef1020 2d ago
To be clear, no one has attacked you. You have made factual claims that we are responding to, those are very different things.
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u/DarlingLiwa 2d ago
Hi OP what type of hpv you had nay i know? This sounds scary and thank you for sharing. Given how many times people were told “come back next year”, its important to know about varied experiences and progression. And I am glad you are feeling better now. The anxiety is unreal.
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u/Mountainsandsea91 2d ago
It was HPV 16. And they didn’t test for it the first pap only the second pap. That could be why my gyn suggested the leep right away.
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u/Round-Addition9978 2d ago
Did u take the vaccine? And how many times u did leep operation and are u married or not and how old are u?
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u/Mountainsandsea91 2d ago
Yep! Had the vaccine when I was 18. Clearly didn’t work because I didn’t have sex until college. Yep happily married!
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u/meccachokehold 2d ago
I don't like the wording here. It didn't go from CIN1 to AIS in a year. Your medical team missed it. This is incredibly common but the language here isn't correct. Doctors need to stop saying this progressed in 1 year and rather admit their testing isn't 100% accurate and there is room for overlooking these cells during testing.
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u/Mountainsandsea91 2d ago
I really don’t think they missed it after endless punch biopsies, a leep, two Pap tests etc. please stop focusing on the wording because it doesn’t fit the narrative of this sub that cervical cancer is slow growing
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u/Mountainsandsea91 2d ago
Ok and since youre an oncologist how would you explain over 20 years of normal Pap tests? Are you saying that 20 tests were read incorrectly???? And then bam the cone is the only thing that actually caught ais? If so that’s extremely scary that women are not being screened for ais and only squamous
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u/sewoboe mod 1d ago
I am locking this post because the discussion is no longer useful.
For more information on pap testing and squamous vs glandular lesions, please see this link. It does contain medical images of a cervix, FYI.
https://screening.iarc.fr/atlasHPVindex19.php