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The Means to an End - of a Discussion

Dragonfly23
0 Recommendations

As anyone who has read even a few posts knows, HPV is a very complicated issue!

As an HPV awareness advocate, nothing is more upsetting than to have inaccurate information disseminated, especially to newly diagnosed individuals. This occurs a lot on websites where there are no restrictions on what is posted and these sites are not certified by HONCode (an organization which certifies that the site adheres to standards of ethics and the dissemination of ACCURATE medical information). Unfortunately dissemination of inaccurate information also occurs on forums and blogs.

Several decades ago, it became obvious that the original classification of cervical abnormalities created by George Papanicolaou (the man who developed the Pap smear) was not reproducible and a cause for confusion amongst both pathologists and clinicians.

As a result, a pathologist named Ralph M. Richart developed the currently used nomenclature of CIN (cervical intraepithelial neoplasia) as a means to unify the medical community in not only its understanding of the level of disease but the adequate treatment of it as well.

http://arpa.allenpress.com/arpaonline/?request=get-document&doi=10.1043%2F0 003-9985(1999)123%3C0993:IITTRT%3E2.0.CO%3B2

http://www.faqs.org/abstracts/Health/A-modified-terminology-for-cervical-in traepithelial-neoplasia.html

Dr. Richart, a pathologist at Columbia Presbyterian Medical Center in NYC is credited with the current system of CIN vocabulary and is credited with over 270 articles relating to this subject as well as it's relation to HPV, HIV, screening methods etc.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Richa rt%20RM%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPan el.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus

As an aside, the medical community has several other systems which unify the understanding not only of procedures (CPT codes) but diagnoses (ICD-9 codes). A mistake in coding (particularly with ICD-9 codes) can be very detrimental to a patient ranging from denial of payment, refusal to issue life insurance, denial of insurance claims and many others.

Dr. Richart, in conjunction with Dr. Thomas C. Wright, also from CPMC in NYC, have worked together in this area for decades and are indeed the pioneers of the current intraepithelial neoplasia "IN" system (it is applicable regardless of origin and applies to VIN, VaIN, and AIN as well as CIN).

I am honored in a sense to say, that since my diagnosis with HPV in 1987 until 2002, it has been both Dr. Richart and Dr. Wright who have been responsible for the diagnostic pathology not only of every biopsy I have had, but also for interpretation of every in situ hybridization for HPV DNA which has been run on my biopsies as well.

If anyone can put an end to the debate over whether CIN3 and CIS (carcinoma in situ) are one and the same, it certainly would be Dr. Richart, after all it's HIS system we're talking about here. Obviously there will be those in the medical field who continue to utilize outdated methods of terminology/characterization but this does not mean they are correct. If anything, they should be responsible to bring themselves up-to-date and utilize (and understand!) the current system for the betterment of all patients and the patient's subsequent care.

So, in an effort to end this confusion once and for all and given that he worked on my case for 15 years, I called Dr. Richart today. He confirmed that CIS was a part of the “old” system of grading and really should not be utilized any longer (this is why he developed the “IN” nomenclature). He also stated that functionally, the IN3 diagnosis and CIS diagnosis are one and the same! In fact, there is only one diagnosis code which covers both these terms and that is 233.1.

He went further to agree, that any insurance company which is covering an individual on a cancer policy, and whose language states that they cover a CIS but are rejecting a CIN3 need to have their doctors get this straightened out with the insurance company so they can receive their benefits.

So, hopefully those who have remained confused claiming that an IN3 diagnosis (regardless of site of origin, CIN, VIN etc) was NOT the same as CIS, you can rest assured that the creator of the IN system makes clear that it is!

Explore topics in this discussion:

Myelodysplastic syndromes Cancer Surgery Hysterectomy Leukemia Confusion Radiation therapy Hodgkin's disease Hip dysplasia Menopause HPV Carcinoma in situ

20 replies

pepsicolarocks

So glad you brought this up!

Of course this is of particular interest to me, because I have a supplemental cancer policy, where this exact subject was raised, and my question is this: If CIS and CIN III are synonomous, why then, is CIN III referred to as "Severe Dysplasia?" Clearly, dysplasia and cancer are not the same thing. Here is how it was explained to me and I'm not trying to disagree with you on this, I'm only telling you what was told to me by the insurance company, which makes perfect sense, if you think about it.

"While "dysplasia" is a term used to describe a "pre-cancerous" condition, "CIS" is a term used to descibe a "pre-mailgnant" or "non-invasive" condition; CIS is considered to be stage 0 cancer and is, therefore, not dysplasia."

When my docotr called me with the results of my colposcopy biopsy, he diagnosed me with CIN III and then said, "The good news is that it's not cancer." Upon further research, I was able to find out that my condition was coded as 233.1, which is, in fact, "carcinoma in situ", which is, in fact, cancer and I was finally able to successfully make my initial diagnosis claim with the insurance company. Of course, my doctor knew all along that what I had was, technically, cancer and not dysplasia, but severe dysplasia sounds sooo much better than non-invasive or pre-malignant cancer, don't you think?

It may very well be nothing more than symantecs, but you can't have it both ways, it's either dysplasia or it's cancer and we, as patients, have a right to know the truth about our condition, as opposed to having it candy coated under some confusing and contradictive terminology. As I stated before, I'm not disagreeing with you about anything that you posted, so please don't take it personally, but I am saying that, under the circumstances, it would appear that the terminology currently being used is erred.

jamiegirl

Yes Bonnie, you are right. Many in the medical field DO continue to use incorrect terminology unfortunately. I mean, even look at how many dr's give patients incorrect information about hpv!!! They DO need to bring themselves up to date or we will suffer the consequences, as many have....

Dragonfly23

A few things are getting missed here. Dysplasia is not the same as INVASIVE cancer but it can be the same as in situ cancer. Not all cancers are invasive just like not all cancers are malignant, some are benign. However precancerous and premalignant are synonymous here.

It is not a case of the current system being erred, but rather of the immense confusion caused by those who refuse to utilize the most current "IN" nomenclature and continue to utilize the outdated CIS terminology. If everyone would get on the same page there wouldn't be this confusion. Your question (why is CIN3 referred to as severe dysplasia if its the same as CIS) arises because you too are overlapping the old and the new.

Technically there are only two classifications LSIL (low grade squamous intraepithelial lesions = IN1) and HSIL (high grade squamous intraepithelial lesions - IN2/3). If everyone would become "literate" regarding the use of CIN3, understanding that by comparison to the old system it is synonymous with CIS, then CIS would and should eventually be replaced by only the use of CIN3.

Insurance companies are not known for putting anything is lay person language rather for making policies as complex and difficult to understand as possible thus allowing them more "wiggle room" to get out of paying their policyholders. I haven't come across an insurance company yet (whether car, homeowner's, life, etc) that goes out of their way to PAY a claim. If they can use outdated terminology to get out of paying a claim they will, I'm convinced of that.

Dr. Richart has been on vacation for 2 weeks and just returned today. The last post I read (of yours Pepsi) was that you were denied by your insurance company stating you had CIN3 and NOT CIS. I specifically contacted Dr. Richart, as I said since he is responsible for this new nomenclature) to settle the issue and enable you (despite prior posts) to get the benefits you deserve under your policy AND so that others would not be further confused being told that CIN3 and CIS were NOT the same.

I'm glad you were able to get your benefits.

corellin

Dragonfly -- I'm so glad to hear from you again. And glad you clarified. When comparing the old system to the new system, the old system had mild, moderate, severe and CIS. The new system has CINI (mild), CIN2 (moderate) and CIN3 (severe/CIS) -- so what was once two diagnoses under the old system -- severe & CIS -- is now combined under one diagnosis of CIN3. I don't think the ICD-9 codes have caught up with the new system which adds to the confusion. I'm glad you were able to get the final word from the people who came up with the nomenclature and also glad that you've had such experts to help with your personal diagnoses.

pepsicolarocks

Dragonfly:
Thanks! Not to be contrary, but let's just say for a moment that precancerous and premalignant are, in fact, synonomous, as you stated in the above post, then that would also have to mean that CIN I & CIN II are also the same as CIS, since they are both precancerous conditions, as well, but we both know that this is clearly not the case and this is where all of the confusion comes in. CIN III undisputedly stands alone from CIN I & CIN II, since CIN III is the only one that is said to be synonomous with CIS and CIS is undisputedly cancer, which by definition alone, can no longer be considered dysplsia.

So, while I do understand that CIN III and CIS are now being considered synonomous, I don't understand why they call CIN III "Severe Dysplasia". If an insurance company acknowledged that I have cancer (whether it's invasive or not), then I'm pretty sure I have cancer, because they would not pay, otherwise.

Dragonfly23

You're confusing yourself because you're lumping the old naming with the new naming. The levels 1, 2 and 3 have to do with the depth which the abnormal cells take up from the skin surface to the basal layer. If abnormal cells are "sitting" on the basal layer but have not progressed through it, it is considered (by the old language) CIS, and by the new language CIN3.

As for CIN1 and CIN2 having to be CIS because they're all precancerous you're missing the significance of the numbering. There are various stages which these precancerous lesions go through. As they grow, they encroach more and more down toward the basal layer. CIN1 only takes up 1/3 of the distance from skin surface to basal layer with abnormal cells, CIN2 takes up 2/3 - CIN3 comprises all abnormal cells down to the basal layer. CIN1 and 2 are obviously not CIS because they do not take up the entire epithelium. They call it severe dysplasia because that is the new naming system LSIL/HSIL and mild, moderate and severe dysplasia. Actually CIN1 is all by itself in the LSIL group/mild dysplasia and CIN2 and 3 are in the HSIL group/moderate to severe dysplasia.

Ever heard the saying you can put a boat on a ship but you can't put a ship on a boat? Well in this case the boat is the CIS and the ship are the dysplasias. All CIS's are a dysplasia but not all dysplasia are a CIS.

Thank you Corellin for even commenting on my being missing. I wanted to get this answer before I came back on again so I could post this as I said a means to and END. My end on this board at this time.

I have now has a surgical port placed for chemo, (very painful) have started chemo and radiation therapy with two treatments per day. I find that I need my own support systems and cannot commit myself to answering others questions at this point in time.

I'm the one who needs answers and support right now so for the time being, I have chosen to leave the forum. I just wanted to come back to post this last discussion thread.

flowershoplady

dragonfly, i don't think you can effectively post a message in an open/public message forum and declare that that's the end of the conversation (!). yes, the most current terminology and standards use CIN3 to encompass CIN3 and CIS, however, that distinction is indeed currently still made. a great example of a source currently continuing the distinction with CIN3 and CIS is the national cancer institute, shown here on the following website page which was reviewed february 2009:
http://www.cancer.gov/cancertopics/factsheet/detectio n/Pap-test

most of us try our best to provide accurate information, and, i hope that when inaccuracies are made, it's noted kindly, with the continued overall theme of support, which is what this forum is all about. i don't think that making the distinction between cin3 and cis should be called an 'inaccuracy', particularly because this distinction is still made by many in the medical field. and, let's remember that nobody here is posting information as a a doctor providing medical advice.....and everyone 'should' know that, and many of us often remind others to talk to their doctors.

on a more personal note, i wanted to wish you the best with your current treatment, and would encourage you to continue to come to this message board for support. there's many caring women here!

Dragonfly23

The most current terminology does not utilize CIN3 to encompass itself and CIS. The current terminology is CIN3. The fact that others continue to make this distinction only points to their co-mingling of terminologies and the mixing of apples and oranges.

If anyone would know the correct information about this it is the man who developed the intraepithelial neoplasia terminology, Dr. Richart. Based on a post several weeks ago, there was still confusion about this. I thought the ladies would like some clarification however Dr. Richart was on vacation until yesterday. Who better to go to than "the horse's mouth" himself for clarification. Apparently JamieGirl, Pepsi and Corellin found this useful.

In trying to establish a corollary between the old terminology and the new terminology, CIN3 in the new system would be correlated with CIS in the old system. The logic that because distinction is still being made means it's accurate eludes me. And, I would like to think more highly of the NCI but they too have made other mistakes relating to HPV.

Apparently you would prefer to dissect my choice of words regarding the discussion title rather than focus on the content. If you read down further you will see that I stated: "this as I said a means to an END. My end on this board at this time." This is the end of MY discussions here at this time.

And by all means let’s not forget that we are not posting as doctors. This is why I clearly stated that this information was being conveyed to me by Dr. Richart. I don't however believe that you need an MD after your name to understand the use of, or necessity for evolving terminology. The fact that many in the medical field continue to make this distinction does not make it right. However, if you would like to disagree with Dr. Richart that is certainly your prerogative.

As to your comments on posting "kindly" I am not sure what this is all about. I could find no unkind posting above. However, there are always those people with whom no matter how kindly you say something, they cannot accept criticism and will become defensive and run off to a moderator. I have since ceased to spend my precious time along these lines.

For those here that are concerned about me or wish to provide support, a private post would be most welcomed.

Bonnie

flowershoplady

bonnie, i'm sorry my posting seems to have fueled some sort of anger, and i think you may have misunderstood or misintepreted the intent of my posting. i'm really not dissecting your words and certainly not disagreeing with current medical standard terminology! and, i'm also sorry that you've evidently encountered members of this forum that didn't like your criticism and reported them (although i can't imagine for what purpose or what a moderator would 'do' since everyone is entitled to voice their opinions!)...and i think those would be rare situations. i think this a warm and supportive community and know that support is here for you whenever you want it....and hope that you decide to keep in touch via the message boards, particularly as you may want others to lean on, to listen to you, etc., as you deal with your cancer treatment. sending gentle hugs.....

sapphkat

I'm confused.. is AIS now considered CIN3 as well?? Because well, it seems a lot different, being that I can't just seem to have a LEEP or even a cone and get rid of this stupid thing.

tam1

sapphkat - i've wondered for years as to why i can't get rid of this either. honestly i've come to the conclusion that the doctors don't know why either. one time i was told it's my immune system, then one time having a high viral load was mentioned, then i was told it was completely embedded in my entire cervix (despite clear margins). so my conclusion is it's all three of those. it's frustrating because there are some women who carry high risk hpv and their pap smears are normal so i do believe that some of us have better cancer fighting immune systems then others. but it makes me think why can't i be one of those women?? it's frustrating when you can't get answers and then they want you to accept it for what it is. whatever.

and it's my understanding AIS is completely different from CIN 3 and the above conversation just did not reference glandular abnormalities at all. but all in all, no matter what the diagnosis CIN 2, 3 CIS, AIS the treatment options (leep, cone) are the same.

Dragonfly23

Sapphkat

AIS arises from glandular tissue (adenocarcinoma) CIN lesions arising from the squamous or skin cells. It is the origin of the cell line which distinguished the pathology.

The cervix transitions as it moves up the cervical canal from skin cells to glandular cells. This are where the cells change type is referred to as the transition zone (T-zone).

Treatment for CIN versus AIS are not always the same. In some instances, they can be, however typically there can be far more extensive surgical procedures required with AIS such as hysterectomy should the lesion progress.

Having a LEEP or a cone doesn't always get rid of CIN either in all cases.

nyclady

INteresting discussion -- I was only told that I had high grade lesions (in situ -- non cancer). it was suggested that I have a leep. I read there is an 93% chance, given my clear margins post leep, that this will do the trick. I will know when I have my repap in December. Does the terminology matter as much as the progression? I am clearly still HPV+, as I have been for 5+ years. I am trying the MMS program. To help my system clear, too.

pepsicolarocks

Okay, not to beat a dead horse, but here is the definition of cancer, as outlined by my cancer policy:

Cancer: "A disease manifested by the presence of a malignant tumor and characterized by the uncontrolled growth and spread of malignant cells and the invasion of tissue. Cancer also includes Leukemia and Hodgkin's Disease. Cancer is further defined to include carcinoma in situ, that is, in the natural or normal place, confined to the site of origin without having invaded neighboring tissue.

Cancer DOES NOT include premalignant conditions, conditions with malignant potential, or pre-leukemic conditions."

Wikipedia defines the following conditions:

Dysplasia
From Wikipedia, the free encyclopedia
Jump to: navigation, search
This article is about the pre-cancerous change in cells and tissues. For the clinical condition affecting the hip joint, see Hip dysplasia.


Dysplasia (from Greek, roughly: "bad formation") is a term used in pathology to refer to an abnormality in maturation of cells within a tissue. This generally consists of an expansion of immature cells, with a corresponding decrease in the number and location of mature cells. Dysplasia is often indicative of an early neoplastic process. The term dysplasia is typically used when the cellular abnormality is restricted to the originating tissue, as in the case of an early, in-situ neoplasm. For example, epithelial dysplasia of the cervix (cervical intraepithelial neoplasia - a disorder commonly detected by an abnormal pap smear) consists of an increased population of immature (basal-like) cells which are restricted to the mucosal surface, and have not invaded through the basement membrane to the deeper soft tissues. Myelodysplastic syndromes, or dysplasia of blood-forming cells, show increased numbers of immature cells in the bone marrow, and a decrease in mature, functional cells in the blood.

Dysplasia is characterised by four major pathological microscopic changes- 1. Anisocytosis 2. Poikilocytosis 3. Hyperchromatism 4. Presence of mitotic figures.

Dysplasia, in which cell maturation and differentiation are delayed, can be contrasted with metaplasia, in which cells of one mature, differentiated type are replaced by cells of another mature, differentiated type.


Dysplasia vs. carcinoma in situ vs. invasive carcinoma

"These terms are related since they represent the three steps in the progression of many malignant neoplasms (cancers) of epithelial tissues. The likelihood of developing carcinoma is related to the degree of dysplasia.[1]"

"Dysplasia is the earliest form of pre-cancerous lesion recognizable in a pap smear or in a biopsy by a pathologist. Dysplasia can be low grade or high grade (see "Carcinoma in situ," below). The risk of low grade dysplasia transforming into high grade dysplasia and, eventually, cancer is low. Treatment is usually straightforward. High grade dysplasia represents a more advanced progression towards malignant transformation."

"Carcinoma in situ, meaning "cancer in place," represents the transformation of a neoplastic lesion to one in which cells undergo essentially no maturation, and thus may be considered cancer-like. In this state, epithelial cells have lost their tissue identity and have reverted back to a primitive cell form that grows rapidly and without regulation. However, this form of cancer remains localized, and has not invaded past the basement membrane into tissues below the surface."

"Invasive carcinoma is the final step in this sequence. It is a cancer which has invaded beyond the basement membrane and has potential to spread to other parts of the body (metastasize). Invasive carcinoma can usually be treated, but not always successfully. However, if it is left untreated, it is almost always fatal."

As you can see, this can become incredibly confusing, because on the one hand, you have dysplasia (in general) and CIS both lumped into the same category and being defined by Wikipedia as "pre-cancerous", although distinctions are still clearly being drawn between dysplasia and severe dysplasia, which is also refered to by Wikipedia as CIS and then they turn right around and give us a whole different definition for CIS and if you'll notice in the above text, Wikipedia defines the meaning of carcinoma in situ as "cancer in place", not "dysplasia" in place. What the hell??

All I really want to know is why are there so many contradictions? Is someone out there intentionally trying to confuse us?? I mean, REALLY!! Are the insurance companies somehow or another behind this and trying to make it more difficult for women who have been diagnosed with CIN III or HSIL, to make a cancer claim on supplemental policies, by removing the term "CIS", as it is related to the uterine cervix, because that's what it would appear to be to me. Bonnie, do you think you could get some clarification from Dr. Richart on these contradictions in terminology?

jamiegirl

nyclady - i am doing MMS too. I'm up to 9 drops/day. Don't want to change this discussion so lets continue in another thread....

Dragonfly23

NYClady, The terminology is what is supposed to define the progression. This is why when people fail to utilize the most frequent terminology everyone ends up with problems. In order for the pathologist and the gyn and the surgeon (if you have a separate gyn and perhaps a gynoncologist) to all understand what they are dealing with and treat it appropriately they have to be on the same page.

Pepsi - First off I don't think we should be utilizing Wikepedia and whatever other search engine to be the voice of authority here. Sure they can give a definition but frankly you're only adding to the confusion. There needs to be a single acceptable set of terms that everyone uses and thus the current quandry. As for insurance companies these policies are "boiler plate" meaning they're standard all containing the same language and probably quite old. I doubt they are running to update the language in all these policies and instead are dealing with them as claims come up.

According to Dr. Richart, there are no contradictions in terminology, per se. There are those that use the most up-to-date medically accepted nomenclature, and those who don't. THAT is where the contradiction, if you want to call it that comes in. If you understand that, you would understand that there really are no contradictions either. So exactly what still has you confused and why.

FSL - You stated in your post, "i don't think you can effectively post a message in an open/public message forum and declare that that's the end of the conversation". I most certainly can, especially when I explained further down (which you apparently didn't read or overlooked) that the "means to an end" was the end of my involvement on this forum and that the "discussion" referred to was MY discussion (thread) and this being my last. Funny how you chose to focus on that.

I'm also unclear about your statement: "i'm also sorry that you've evidently encountered members of this forum that didn't like your criticism and reported them" Was your perception that I reported THEM? I've never reported anyone because as even you stated everyone has a right to their opinion. I've only sent two private posts containing suggestions and that's it. You stated you're not sure what a moderator would even do. Well you've certainly been around here for a long time so I'm sure you know more about that and the moderators than I would. The post I received from the moderator was so extreme that it floored me, and I'm sure would floor anyone given what I said in that post as it certainly didn't raise to the level of that type of reprimand.

What I find so disingenuise is to have all this coming from you. For the most part you have made it a point to disagree with a significant amount of what I've posted since day one. Not realizing initially that I could not post my website you sent me a private post asking if I was the same person on the site. When I proudly said yes, you informed me I couldn't do this. Within 24 hours I got a post from the moderator telling me not to do this.

Of the two private posts I've ever sent (mentioned above), one of them was to YOU! I never received a response from you to that post but what I did receive the following morning was a reprimand from the moderator - strange coincidence don't you think? So at this point I'm finding your concerns, best wishes for my treatment and encouragement to remain on the forum falling quite flat. As for being angry, I don't have time for being angry - negative feelings won't get you anywhere and depresses the immune system. If anything I find the back stabbing to be quite sad.

flowershoplady

yes, definitely coincidence...and i'm quite taken aback by your accusations. just like i read the postings, so do the moderators. i have no idea what sort of reprimand you received from a moderator, nor what you said to receive it. i don't know why my postings are fueling your anger...or what sure seems to be anger, at least towards me. i try to avoid negativity, and i read your note to me, for sharing my thoughts, here and on other threads, and i won't comment further on this because it's not a positive use of my time/energy. i see no purpose in saying anything further, and i'm really sorry that you aren't able to see my concern as sincere.

TeamInspire

All,

It is important to note that Inspire is not and was never intended to be a place that provides medical advice. As it states in the terms of use, Inspire "does not provide medical advice and is not licensed to provide medical diagnoses, treatments, or other medical services that are provided by...medical professionals. Content appearing on this Service does not constitute medical advice and is not the practice of medicine." That includes any discussions or comments that are stated to come from medical professionals. "Dr. so-and-so says, etc." should never take the place of your personal provider's advice or diagnosis. Stories and opinions in this group are just that, many use them to open a dialogue with their provider but no one should just accept them as fact or make any decisions based on them.

Inspire is intended to be a place to meet others who have or are dealing with the same medical condition and provide support. Our members often find it very helpful just to talk to another who has been there and are going through the same thing.

Beth, TeamInspire

funshine16

Thank you for your informative and FACTual post. I was just diagnosed with CIN III glandular cell abnormalities. What are your thoughts on a total hysterectomy? I am done having kids but am only 30.

Dragonfly23

Thank you for your response. Although CIN3 can be treated successfully with LEEP or a cone, if you are done having kids my first reaction would be to suggest having the hysterectomy so long as they left the ovaries and not force you into menopause.

I realize this may seem radical to some people and it is major surgery, however, I am all too well aware having gone through two invasive cancers and treatment for them just how bad it can get with this virus.

You didn't mention if you've been dealing with this for some time with recurrences or if this is an initial diagnosis. If this is the first you're dealing with it then I would probably say be conservative and do a LEEP or other procedure as recommended by your doctor whom I would suggest should be a gynonc and not a regular gyn. If you then continue to have recurrences you can always opt for the hysterectomy.

I would be happy to speak with you in a PM if you would like to send one. Best of luck to you!

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