CIN III vs. Carcinoma In Situ

Several years ago I found out I had CIN III, which affected the FULL thickness of the squamous epithelium. My doctor at that time (at the VA), told me not to do anything at all as it can take up to 5 yrs or longer to develop cervical cancer. (insane in my opinion) In my pathology report I requested, it also stated: "Extensive endocervical glandular involvement by CIN III is seen." I thought this was something I should not leave alone - as it was HSIL and I have one of the high risk HPVs as well. The doc absolutely would not do anything. I filed a complaint, as he also lectured me and acted very unprofessionally.

I have several questions - PLEASE help if you know any answers. :) Thanks! If the CIN III Contains the entire thickness of that epithelium tissue, I read online, that it is then considered: Carcinoma in situ (or stage 0 of actual cervical cancer) - anyone know if that is accurate? And if so, I wonder why the doctor would downplay this so greatly. ....

Next question - the thing about the extensive endocervical glandular involvement with the CIN III - does that mean the area going into the uterus has also been affected with CIN III? If so, what ways are there to treat that? Does the LEEP remove that or not at all?

I ended up paying out of pocket and having a LEEP done - she removed two layers as the damage was pretty deep.

I went to the VA again and found out I have CIN II/CIN III and it is back. I asked my new doctor (who is not any more compassionate than the last) about the endocervical involvement and if I should be concerned that the CIN III spread to that years ago and it wasn't treated. She said, "That is irrelevant." So, PLEASE fellow women - if you have any information or experiences with these terms and situations, I'd love it if you'd share any advice.

As of now, I am supposed to either have cryotherapy or a LEEP, but I'm concerned that this could have spread, as I also had a large tumor in my pelvic area a couple years ago.I am set to have an internal ultrasound, my primary care doc. set me up for that as the OBGYN would not be interested to have me checked out that thoroughly. It's tough at the VA now...not many options. But I am willing to pay outside for more advice and help with this. Thanks you guys for your support.

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My understanding (from an oncologist) of CIN3 is that it is the full thickness, and the cells are pre-cancerous. In carcinoma in-situ (CIS), it is still the full thickness, but the cells are cancerous. It still has not invaded. It can be considered Stage 0, but most call it CIS. The treatment for CIN3 and CIS are usually the same. In some cases, the treatment for Stage 1a1 cervical cancer is also still the same.

Most doctors do nothing for CIN1, but watch it. Most doctors schedule surgery for anything more (cryosurgery, LEEP, conization, etc.) I had a conization for CIN2. The doctor found CIS further in. I don't understand why your doc didn't want to do anything for the CIN3.

The endocervical glandular involvement - I think that if you were to view your cervical canal as a north-south picture, there are small tunnels off to the east and west of the canal. I think that is where that involvement is. I also have that. The LEEP removes a shallower layer than a conization would, so it would depend how far into the canal they are whether a LEEP would remove it or not.

When dysplasia is persistent or recurrent, I've heard recommendations of contacting a gynecologist/oncologist for at least a second opinion, if not for taking over your treatment.

It is good that you are getting copies of your medical records. I'm sorry to hear that you are in this boat, and to make it worse, you're being treated at the VA. I hope this has helped you, or at least has given you questions for your doc.

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NO!!! Cin3 and CIS are the same thing. Dragonfly23, Bonnie Diraimondo, who wrote the recently published book on HPV, Any Mother's Daughter, clarified this termonology a few months ago in here. I will try to find the link to the discussion.

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Here it is:

http://www.inspire.com/groups/national-cervical-cancer-coalition/discussion /the-means-to-an-end-of-a-discussion/

It is still a topic of confusion but if you read the link, it spells it all out.

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ps - I meant "terminology" above ;) wish there was an edit button!

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I'm sorry. I was just repeating how the oncologist I saw explained it to me. She told me they are basically the same. The CIS is part of CIN3, but is the "worse" edge of it, because the cells are actually becoming cancerous.

The last diagnosis I had regarding my cold knife conization was that I had carcinoma in-situ. It didn't say CIN3/CIS.

Is it safe to say that CIN3 includes CIS, but you can have CIN3 without CIS?

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Thank you both SO MUCH For your advice and experiences. I appreciate it - momofthree. :)

And jamiegirl - thank you so much for that link to the post. I ended up looking up my pathology report diagnostic code (thanks to you) and it was 233.1 - for carcinoma in situ. I cannot fathom how my doctor at the VA would say it was no big deal and that it would take 5 yrs to develop into cervical cancer, I should do absolutely nothing if in fact it was already considered carcinoma in situ. I feel bad that so many people could be wrongly diagnosed or misled by doctors like mine.

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Cr Momofthree- the point is that CIS is part of the "old" terminology - it shouldn't be used anymore. No worries - even the doctors still get it confused. The problem is, the more you learn about hpv, the less you realize many of the doctors really know.

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I should say the doctors as well as the insurance companies!!

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jamiegirl, I absolutely agree! When I ask my gyn questions, I get vague answers, I'm pretty sure I know more from "googling" and this website! I am going to ask for a referral to another doc, whether I get it or not will be up to Tricare (my husband is military). I would love to go see a naturopath but insurance won't cover that either. : (

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I have the same thing CIN II, III, and CIS and I saw my OBGYN Mon she said CIS and CIN III are the same there are cancerous cells present but they aren't invading, in situ means in place, I am having the LEEP procedure done you may want to ask your doctor about it. I was told that the LEEP would remove all of the cancerous and pre cancerous cells, shee also told me that she was going to do a cone biopsy while i was underI don't really know what that is all about

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blondie - just understand that CIS is the old terminology which is not supposed to be used anymore although a lot of doctors still mistakenly use it! They are PRECANCEROUS, not cancerous.

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CIS is the old terminology, and it's true that under the old terminology, there was mild, moderate, severe & CIS. Under the new terminology, CIN3 has replaced the old "severe" and "CIS", so, yes, CIN3 encompasses a wider range of diagnoses and is not necessarily only the full thickness, as was CIS. CIN3 is "up to" the full thickness, but can be as little as slightly more than 2/3 of the thickness since CIN1 covers the first third, CIN2 up to the 2nd third, and CIN3 up to the the third third (meaning it could be 3/4 of the thickness). And, Gen, I don't think there is a diagnosis code for CIN3, so that's part of where the confusion comes in. I don't think our coding system has caught up to the new terminology, although I might be wrong about that.

Gen -- I normally feel doctors tend to overtreat, but your VA doctors sound just terrible. From what I've read, anything with endocervical involvement needs to be treated more aggressively and the traditional GYN community ALWAYS recommends a LEEP or cryo for CIN3.

At this point, since you've already had one LEEP which has clearly not removed the dysplasia, it seems to me cryo would be risky. Cryo burns off top layer of cells, whereas LEEP actually removes tissue down past the basal cell layer where the HPV is housed, so can actually remove a large chunk of the HPV infection along with the dysplasia. That gives your body a better chance of "clearing" the virus -- which means either ridding your body of the virus or just suppressing it to levels below detection (there's debate amongst the research community about what "clearance" actually means).

It's great that you're being proactive with your health and researching your options. I wish you the best in figuring out next steps.

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Actually, some doctors still use CIS because they suspect that there may be more underlying cancer, thus the diagnosis of CIN III/CIS. I was diagnosed at CIN III/CIS Stage 0, but now after 10 years, many doctors consider it the same. However, my current doctor mentioned that sometimes they give you the CIS diagnosis because they are going to stage your treatment and will not know the extent of precancer vs. cancer until surgery is performed and bipsy results are done. In actuality, my diagnosis stayed the same (which was Godsend for insurance purposes because I am considered to have had precancer by today's standards), but my current doctor feels that from the pathology and surgical reports and medical records, he would guess I was more stage 1 or 1a1.

You doctor may be following the same, so I would venture to guess they may be giving you the CIS talk because of the glandular involvement, versus someone who has true CIN III and it is a slow growing precancer.

Do you happen to know if they discussed whether it was squamous or adenocarcinoma, as that figures in too.

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You have to get rid of the HPV to stop the cells from being damaged over and over. I did several things and it was gone within 30 days. A friend of mine prayed for me and I I went back to the doctor and it was gone. I honestly believe this is what got rid of it. Also, I did not drink at all to get my immune system up and ate well. I took a product called viralfree and another product called MAX 3. I also had acupuncture. Once the viris is gone your body will get better. I'm not sure if its better to have the leep or not. I did that also and the next test was negative.

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pj, if your doctors are still using the CIS designation, they're not using current terminology. if think it takes a while for doctors to transition to new standards - you can help get them up to speed! :)

genevieve, i echo what corellin posted. how very unusual - and awful - that the original va doctor dismissed your diagnosis and didn't recommend treatment. good for you for pursuing treatment! i hope your current doctor is significantly better than the old one, but like corellin, i, too, would be concerned that he's recommending cryotherapy.....leep seems more appropriate. you may want to take a look at the acog guidelines, as asccp.org. and let us know how you're doing!

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i feel really badly for many people that seem to be frustrated with their doctors or are getting terrible advice from message boards.

medline is a free service provided by the us national library of medicine which has basic informatoin, and here is the definition of CIN:

http://www.nlm.nih.gov/medlineplus/ency/article/001491.htm

dysplasia is abnormal cells that are not cancer:

http://science.education.nih.gov/supplements/nih1/cancer/other/glossary/act 1-gloss2.htm#d

pubmed is a larger database that searches other government provided medical data including current studies and medical statistics which also has accurate information that's pretty easy to read:

http://www.ncbi.nlm.nih.gov/pubmed/

you can use pubmed to search for experimental trials and the outcomes and statistics of certain medical events, such as LEEP on CIN III.

here is a very recent study showing that you need to closely monitor those with CIN II/III after a LEEP:

http://www.ncbi.nlm.nih.gov/pubmed/19940997?itool=EntrezSystem2.PEntrez.Pub med.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1

here is one showing oral DIM as an improver of CIN II and III: http://www.ncbi.nlm.nih.gov/pubmed/19939441?itool=EntrezSystem2.PEntrez.Pub med.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2


sorry for the long post, but i just want everyone to feel like they can educate themselves. don't get bullied by strangers!

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I am sorry I don't have an answer to your question but I do have a remark to the fact that this doctor said it would take 5 yrs to turn into cancer! What the heck does he expect you to do? Go insane waiting and wondering if you have been treated properly? Being scared that yes it will turn to cancer or already is? Your past already proves that a diagnosis of one stage of precancer was worse deeper in the cervix. I would suggest if you can go to another Gyno or a Gyno onc on your on money to get a second opinion. I wouldn't want to wait 5 years or 2 years and it is worse. I hope someone can give you some good advise.....

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One thing that bothers me is that there are a number of people on here that say they have CIS or CIN III and also say that they have cancer. I don’t know if they are just misinformed by their doctors but CIS or CIN III is not cancer. I was diagnosed with CIS/CIN III and I am thrilled that it wasn’t cancer. It just makes me uncomfortable to hear people say they were diagnosed with the same thing I had yet they have cancer. And I also agree with whoever posted above that CIS is a term that should not be used anymore.

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wow, that is absolutely horrible that the doc would want to wait up to five years. Actually they do not know how long it can take to turn to invasive cancer and I have read several posts where woman had CIN3 and it turned in less than a year. In five years it could move to youre bladder even your liver. That is scary. It is my understanding that with the CIN3 Diagnoses a cone biopsy is preferred for treatment and diagnoses of any further cancer concerns. I just had the cone biopsy three days ago and I had to dig the info out of my doctor because he seemed to just push me along to the next step without really telling me what was happening with my body. I had to ask the questions and at first i didnt know what to ask. I am now waiting to see if the margins were clear and if anything else was found. I am praying for clear margins and the next step would be follow up paps every three months. Good luck to you and get the CIN3 removed somehow. Its a must. I waited six years after an abnormal pap and now look all that has to be done.

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