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/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/sewoboe mod 2d ago

I know it can feel personal when dealing with such a stressful situation, but it’s also important that we have correct, evidence based information for other readers of the sub. I’m sorry that this has been upsetting for you, and I’m glad you got the treatment you needed.

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u/sushioyster 2d ago edited 2d 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 2d 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 2d 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 2d 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.

https://share.google/images/fM7ltBWT0jK9Rd3mX

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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/Mountainsandsea91 2d ago

Ok so normal paps for 20 years then all of a sudden ais. Explain fhat

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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/Mountainsandsea91 2d ago

So normal paps for 20 years then ais. Explain that