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Old 06-19-2007, 11:10 AM   #1
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Exclamation Cervical Cytology 101

For lack of knowledge, some people either assume that if they have a HSIL pap result, they've been given a 'death sentence' -- and at the other end of the spectrum, some assume an ASCUS result is not 'a biggy'. I want to share this with those who assume that a Pap smear is anything other than a detection tool. Paps DO NOT diagnose or grade abnormalities in the cervix. You can have an ASCUS pap smear result, and have invasive cancer. You can have an HSIL pap result -- and have low-grade dysplasia that can clear up on it's own in 6 months.

Imagine that a Pap test is like a mammogram. Assuming the test is performed correctly, competently, and completely -- a mammogram can identify possible tumors in your breast. A BIOPSY is then ordered to determine whether or not the "possible tumor" in your breast is a) even a tumor, and b) whether or not it is malignant and its stage of malignancy.

A Pap test looks for evidence of abnormal cells. If youíve ever had a Pap, you know that a long swab is used to collect cells of the cervix. Did you know that you can have abnormal cells located on one side (one area) of your cervix, and normal cells everywhere else? And unless that swab took a sample of cells on that one side (that one area) of your cervix -- your Pap test may come back completely NORMAL. You may have abnormal cells slowly turning into cancer -- and not even know it! Scare you? It should! That is why a yearly Pap test is recommended. And women who do have abnormal Pap test results -- donít start bequeathing your worldly belongings yet! For those women with the most alarming HSIL Pap test result, up to 30% of you will have biopsy-confirmed NOTHING!

From the American Society for Colposcopy and Cervical Pathology (ASCCP) -- 2001 Consensus Guidelines for the Management of Women With Cervical Cytological Abnormalities:

[url]http://www.asccp.org/consensus/cytological.shtml[/url]

Itís a long, but VERY interesting report on studies, findings, and recommendations by the ASCCP. One thing this article proves, a Pap test can NOT diagnose dysplasia, much less cancer. Another thing this article shows, is that many doctors are too quick to perform LEEP on women who arenít ďat-riskĒ. Iíve heard some women on these boards state that LEEP is not a ďmajorĒ operation. Though I agree with that statement, I disagree with the idea that a LEEP is not invasive. LEEP is invasive, and it carries risks -- risks that should be weighed very carefully on the proven adverse effects -- not time it takes for recovery! Even the ASCCP warns that LEEP is being overly used to treat women for mild to moderate dysplasia.

Face it Ė odds are you will be exposed to HPV in your lifetime. Odds are that you will never even know youíve had it. And guess what?! Odds are that your body will have successfully fought HPV, and cervical changes (CIN I, CIN II, and yes even CIN III) brought about by your infection will heal without EVER becoming cancer. Fact is, the correlation between HPV and cervical cancer is still a fairly new one. We rely on what our doctors tell us -- and often, our doctors arenít up to date on the latest data (as it is rapidly changing). Read, ask questions, get second (or third) opinions. Itís your body Ė do whatís best for you, not your doctor.

Remember Ė Pap tests only detect possible abnormalities. Follow up on ANY abnormal result. Make sure your doctor is versed in the latest recommendations by the ASCCP, and if they canít answer your questions Ė find a doctor who can! Also, the 5-year relative survival rate for the earliest stage of invasive cervical cancer is 92%. The overall (all stages combined) 5-year survival rate for cervical cancer is about 72%. So even if you are diagnosed with invasive cervical cancer Ė you still have one of the most curable forms of cancer there is.

 
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Old 06-19-2007, 11:53 AM   #2
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Re: Cervical Cytology 101

I think moving forward I am always going to request a coloscopy with my pap----assuming I can do so. I have been a mental wreck since my diagnosis and want to move away from any future surprises. My last pap came back as mild, my biop came back as high grade--though of course my doc did not call me back for FOUR months to tell me I need a biopsy

 
Old 06-19-2007, 12:30 PM   #3
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Re: Cervical Cytology 101

You can request a colpo anytime you want -- it's your body. I requested the HPV DNA test after my first abnormal Pap (ASCUS). When that came back positive, I requested the colpo and had two areas biopsied. They came back CIN II and CIN III. That's when I started to worry. Of course, I thought I just needed to get a LEEP (which my doctor recommended) and get it done and over with. Two years later, I'm still dealing with it -- but after reading (like I've never read before) about the cytology, histology, and pathology of HPV (dysplasia/cancer)...I've come to realize the stress of whether or not I'm going to get cervical cancer is going to do more damage to my body than the HPV is.

 
Old 06-19-2007, 12:50 PM   #4
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Re: Cervical Cytology 101

Michelle, thank you for this post. I agree with what you've written and appreciate you sharing you personal experiences in your previous posts about your LEEP experiences.

I also agree that doctors are quick to push the LEEP option-- I was diagnosed with mild/moderate dysplasia and my doctor urged me to have the LEEP done so I could "start having normal paps again." However, the LEEP may temporarily fix my dysplasia problem, but it in no way does it guarantee that I won't have dysplasia recurr on my cervix sometime in the future.

My boyfriend just finished his OB/Gyn rotation for PA school. He was surprised that the doc mentioned I needed a LEEP, as he said he'd only witnessed LEEPS being performed on women who had very large lesions on the cervix and with severe dysplasia. He also stated that the LEEP procedure required a very steady and experienced hand as the doctor performing the procedure could very easily shave off too much tissue, causing all sorts of complications. I remember you stated that this happened in your situation where they took too much of your cervix during the LEEP as it was an intern and not an experienced doctor who performed this on you. It is horrible that you didn't have a choice nor did you know much about the LEEP back then, but this is why your story is so important to all of us who are facing this possible treatment.

For those reasons, I am avoiding the LEEP until it is absolutely necessary and if my dysplasia doesn't clear up or if it progresses. And even then, as Michelle has suggested, I would opt for the laser ablation first rather than the LEEP as it seems to implicate less fertility risks. I agree that the LEEP isn't a major surgery per say in comparison to heart transplants, etc., BUT there is nothing minor about shaving a layer off of part of your reproductive organ. Thank you again Michelle for your advice and your story!

Also, this correlation between HPV and dysplasia is important for all of us to keep in mind. Unfortunately in some ways, I believe we're all guinea pigs to some degree in terms of which dysplasia treatment options are the most successful and with less risks involved. And while these advancements in cervical cytological screenings have greatly reduced the incidences of cervical cancer in western nations, I believe there is also hyper-sensitivity to minor cervical changes which can very well clear up on its own. Think back on the 60s generation where many young people were much more promiscuous and condoms were NOT commonly used! Now you would think that women of this particular generation would be dropping dead like flies from cervical cancer! But this is not the case so it must be that many of those women most likely had/have HPV but the medical technology back then did not pick up on cervical changes and eventually, their bodies cleared the virus. This is all just my speculation, of course, but this virus has been around FOREVER and is so prolific that we can't think of ourselves as a tiny minority of women dealing with this problem. I think we're just part of a medical generation that fortunately linked HPV to cervical cancer but unfortunately this has also caused a LOT of mental anguish over something that perhaps is not truly as grave a problem as it seems. That's just my opinion! Thanks again for the info, Michelle.

 
Old 06-20-2007, 09:14 AM   #5
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Re: Cervical Cytology 101

And this study in 1999 by the Department of Pathology and Laboratory Medicine, Canada:

Papanicolaou (Pap) tests reported as CIN I (cervical intraepithelial neoplasia, grade 1) may be subject to laboratory misclassification because of screening and interpretative errors. A peer-groupC consensus review was conducted to measure the misclassification rate of Pap tests reported as CIN I and to analyze the undercalled and overcalled tests for due cause. Four hundred and forty-nine Pap tests originally reported as CIN I were independently reviewed twice by a panel of four pathologists, and disagreements were resolved by consensus review. Results were based on the original screening for the first review and, following the removal of those markings, were based on a second, independent rescreening for the second review. A review result of low-grade squamous intraepithelial lesion (LSIL) and atypical squamous cells of undetermined significance (ASCUS) favoring LSIL was equated with the original CIN I result. Final classification was based on the second consensus review. Misclassified tests were categorized as screening or interpretative errors, based on a comparison of the review classifications. LSIL and ASCUS favoring LSIL were reported in 85.1% and 73.9% of the first and second reviews, respectively. In the final classification there were 362 (80.6%) LSIL and ASCUS-LSIL and 87 (19.4%) misclassifications: 31 (6.9%) undercalls and 56 (12.5%) overcalls. Screening error accounted for 35.5% of undercalled tests, and the remainder were interpretative errors, as were all those overcalled. In this study, Pap tests reported as CIN I were subject to misclassification because of a laboratory error in 19.4% of tests. Reductions in screening and interpretative errors were identified as mechanisms for improving accuracy.

-------------------------------------

Since 1999 they have developed tests that are more accurate. Such as the Thin Prep Pap test, where studies have shown the Thin Prep to detect 65 percent more low-grade and more severe abnormalities in the general population. Detect six percent more abnormalities in women with cervical cancer risk factors. Reduce the number of inadequate cell samples by more than 50 percent.

Think about that for a second -- that is a great advancement in developing a more reliable Pap test, but that is still a large percentage of errors IF the sample is taken correctly!

 
Old 06-20-2007, 09:30 AM   #6
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Re: Cervical Cytology 101

Just something to think about LEEP-wise:

My displysia turned out to be way, way high up in my cervix. Displaysia like that can grow undedected for a long time with a "wait and see" appraoch. Not everyone has cells high up there, but for those that do, it can explain those mixed biopsy results (i have all kinds of minor and moderate on my cervix, the high grade was way up inside and my doctor was just really agressive finding it.) I know people have differing opinions, but any part of my body that might give me cancer (and thus might take me away from my kids) is a body part I can do without!

Kim

 
Old 06-20-2007, 09:41 AM   #7
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Re: Cervical Cytology 101

hi mrbonesmom,

Thanks for sharing your story. I had a question about your dysplasia-- did they not catch anything on your endocervical curretage? My doctor told me that that's the part of the colposcopy/biopsy that would detect precancerous changes up inside the cervical canal. Did you not get the ECC done or was yours so high up that they couldn't catch it?

I know we all have different opinions and stories regarding dysplasia and treatment options. I'm going to assume here that women whose dysplasia progresses very rapidly or women with a case like yours, for example, are not the norm and are uncommon (as they tell us dysplasia takes YEARS to turn into cancer). My ECC was negative for dysplasia and sine I only have mild/mod dysplasia, I think waiting 3 months will be fine-- even 6 months! Yes, you're right-- any cancer anywhere on your body is a body part you could do without. But I do think doctor's are being a bit too aggressive these days, especially with younger women who haven't had kids yet as a lot of this dysplasia spontaneously regresses. You are quite lucky to have already had your children! Glad to hear they caught that dysplasia in time, though!

 
Old 06-20-2007, 09:46 AM   #8
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Re: Cervical Cytology 101

About pap results, yes, there is definitely a margin of error, as with any tests. There is a high dependency on the quality of the sample taken too.

When I received my pap results and it was CIN III, I went back for a colposcopy. My doctor did the colposcopy and another pap smear. Results were CIN II-III and I just had LEEP procedure yesterday. All I could think of was 'get the abnormal cells out of me!'. I can't do the 'wait and see'. I'll die of stress first ...

Doctors are humans and they make judgment calls based on what they know and their experience. If unsure, get a second or even third opinion. I asked my doctor how much she would remove to ensure that all the abnormal cells are out. She told me it was a 'judgment call' on her part. I just had to trust that she took out enough.

 
Old 06-20-2007, 10:16 AM   #9
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Re: Cervical Cytology 101

Quote:
Originally Posted by mrbonesmom View Post
Just something to think about LEEP-wise:

My displysia turned out to be way, way high up in my cervix. Displaysia like that can grow undedected for a long time with a "wait and see" appraoch. Not everyone has cells high up there, but for those that do, it can explain those mixed biopsy results (i have all kinds of minor and moderate on my cervix, the high grade was way up inside and my doctor was just really agressive finding it.) I know people have differing opinions, but any part of my body that might give me cancer (and thus might take me away from my kids) is a body part I can do without!

Kim
Hi Kim --

I had CIN III dysplasia deep into my cervical os. You can read my story here:

[url]http://www.healthboards.com/boards/showthread.php?t=506461[/url]

To sum up (in case you decide not to read my long and boring story); they didn't get it all with the LEEP (due to the location of the dysplasia) -- and I will probably have LEEP associated problems the rest of my life.

Not every woman will go through what I went through (and am going through now). Every woman's story will be different. I just want everyone to know that there are options. I want women to educate themselves about HPV and dysplasia. I want women to feel empowered to question (or go toe-to-toe with) their doctor when they don't agree with them. When it comes down to it -- it's your body, and your right to request (or deny) whatever treatment you feel is best for you.

Personally, I choose to believe that dysplasia (even CIN III) doesn't equal cancer. If one in four women get HPV at some point in their lives (and the current estimates are much higher than that) -- the number of women being diagnosed with cervical cancer each year would be mind-blowing! Fear is mearly ignorance. I, for one, refuse to let fear make my decisions when it concerns my body.

Last edited by MichelleNTX; 06-20-2007 at 10:18 AM.

 
Old 06-20-2007, 10:36 AM   #10
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Re: Cervical Cytology 101

Quote:
Originally Posted by kittycatjj View Post
Results were CIN II-III and I just had LEEP procedure yesterday. All I could think of was 'get the abnormal cells out of me!'. I can't do the 'wait and see'. I'll die of stress first ...
Hi (Kitty)...your comment quoted above, and posts from women who are getting their affairs in order after an abnormal Pap are exactly why I post the information I do. Many women are unaware that Pap tests DO NOT diagnose, and CAN NOT diagnose dysplasia or cancer. I've heard women say their Pap test came back CIN III. Well, that's impossible since a Pap test is a detection tool (with a wide margin of error) and NOT A DIAGNOSTIC tool. Only a biopsy can diagnose CIN or Cancer.

One woman just wrote that she had a mild heart attack due to the stress. There are probably other factors behind her heart attack, but FACT IS that stress is more likely to kill you than HPV and Cervical Cancer!

Also -- as with my LEEP, they didn't get all of the abnormal cells. No procedure (including a hysterectomy) is 100% effective and can guarentee that you will be cancer-free from HPV. That is fact! So, wouldn't it be nice to know all the facts about all the procedures we are undergoing, so we can make an informed decision on the best treatment for each of us?

 
Old 06-20-2007, 10:55 AM   #11
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Re: Cervical Cytology 101

Michelle--

Again, I agree with your statements completely. I think that this fear factor is something that is all too pervasive in this HPV/dysplasia experience. And of course, I believe fear is a natural and expected response when you hear terms like "precancer on the cervix" "removing tissue from cervix" "biopsy" and all sorts of jarring terms that are thrown at us when we all go through this process. I was petrified when I first found out I had CIN I-II. I immediately assumed I'd have this all my life and that if I did nothing about it, I'd develop cervical cancer and die. I also assumed that if I did a LEEP or some other procedure, that I'd have many complications preventing me from having babies later on. Of course, fear is a powerful emotion and made me irrational and obsess over all possible worst-case scenarios.

Now after talking to you and other women on this board, I know that dysplasia is not a death sentence nor does it equate future infertility. Fear and stress ARE extremely harmful factors and condone ignorance-- I include myself in this depiction! One of my very good friends went throught this HPV crap last year and I was surprised how little she knew about the nature of the virus-- and she's a master's student! She had 2 abnormal paps and told her doctor to do everything/anyhting to get the abnormal cells out of her body. Well, luckily for her the abnormal cells cleared on their own, but this is another example of how fear induces ignorance. Of course, I chided her for not researching more on HPV/dysplasia but this shows you how little women know of this virus and how it works!

And you're right-- if 80% of women have/have had HPV in their lives, that'd mean cervical cancer would be an epidemic. However, there are very few incidences of it in western nations and I think all of us on this board are astute and are keeping a close eye on our health. Therefore, I don't really think we should let fear override our rationale-- I know I'm guilty of that at times. And yes, dysplasia/HPV is disruptive and an emotional rollercoaster, but is entirely manageable and should not interfere significantly with our daily lives. Thanks again for the info, Michelle!

 
Old 06-20-2007, 11:06 AM   #12
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Re: Cervical Cytology 101

Hi Michelle

You were right. The pap results came back 'suspected CIN III' and recommended a colposcopy which I did. The results were CIN II-III.

I totally agree that one has the right and should know the different treatment options. As I mentioned on another thread, doctors are also humans and they make judgment calls based on their expertise and experience. We, as patients, should be responsible for our own decisions by asking questions and doing some research.

It's great to be sharing experiences and information here. I've learnt a lot. Thanks! =)

 
Old 06-20-2007, 12:44 PM   #13
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Re: Cervical Cytology 101

There are options if you get a bad pap, and everyone should consider all of the options carefully, but it is a fact that in countries where we have pap screanings and procedures such as LEEP, women are only rarely dying of cervical cancer. These procedures save lives. Paps and LEEPS and cones and biopsies have most certainly saved the lives of many women on this board. We should celebrate these procedures and thank God we live in a time and a place where we do NOT have to die from cervical cancer.

Not all HPV becomes displaysia. Not all displaysia becomes cancer...but if you have cervical cancer it is extremely, extremely likely that at one point you had both of those things. If you have those things, like so many of us do, I think you need to make a decision "as if" you were acting to save your life because you might very well be. My mother had stage 1 breast cancer at the same time as a good friend (also stage 1) who was very proactive about not having this or that surgery and getting all of the latest controversy about each drug and refusing treatments as her "right" as a woman and so on. My mother treated her cancer agressively and lived. Her friend did not. My mother has things she is living with as a result of her surgeries. One didn't go very well and she has trouble with her arm many years later, but she is alive. No treatement releated to any stage (including pre-) cancer is fun, but cancer kills and I belive you have to fight it with everything you have and be thankful that you are able to do so, unlike the millions throughout history who did not have the medical opportunities that we have.

Should we be fearful? Who would not be fearful when finding out that you have something that could lead to cancer? I was totally fearful when I found out that only one percent of all the millions of paps done every year come back as HGSIL but I also think that fear motivated me to act swiftly and intellegently. It would be foolish to not have anxiety over something like this, in fact, it could be good for you to be somewhat fearful, depending on your age and maturity level. I read where some fairly high percentage of new cervical cancer diagnosis in young women were from women who had a bad pap (either treated or not) and then failed to follow up. They just didn't take it seriously enough and no doubt their doctors didn't want to "stress them out." I say, if fear leads women to make darn sure they follow up, then fear is not all bad. When our health is at risk, fear can motivate us to do things we would obviously rather not do, such as have treatements and tests.

Wouldn't it be great if we had a screening like the pap test for ovarian cancer? Women's lives would be saved! It would be wonderful. Some of us would get stressed out by a bad result, no doubt, and some would have unneeded surgery, but it would be worth the lives saved.

Kim

 
Old 06-20-2007, 01:27 PM   #14
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Re: Cervical Cytology 101

Hi Kim -- I see you're somewhat frustrated by the fact that you have been touched by dysplasia, and probably went through a lot of stress about it. I too, at first -- went through quite a roller-coaster of emotions. From the time I got the ASCUS Pap result, to the time I got my LEEP -- I was not in the clearest frame of mind to make informed decisions. I heard the word "pre-cancerous" and thought, "Get it the hell out of me!"

Now, you mentioned other cancers -- in particular breast cancer. Fortunately, cervical cancer is the first known cancer to be caused by a VIRUS! This is outstanding! Not only because we now know we will eventually be able to eradicate this cancer-causing disease -- but because we can now screen for the virus itself! This makes the HPV test far more important than the Pap. Does this mean that we stop getting regular Pap tests? NO! It does mean however, that we will be able to better identify more accurately those who do have dysplasia from those who do not – thus leading to quicker diagnosis and less invasive treatments.

Do you know that there are women out there who are being told they need a LEEP based solely on a HGSIL Pap result? And the biopsy results of the tissue that was removed during the LEEP came back clean of dysplasia? An invasive treatment was performed on a healthy woman. Why? Because we get scared when we hear the word “cancer” -- and we’ll do anything our doctor recommends because of our fear.

And on the other end of the spectrum, we have stories where a woman goes in for a Pap test, and finds out she has stage IIb cancer -- even though her last year’s Pap test came back normal. This woman now has to suffer through a hysterectomy and treatments of radiation and chemotherapy. Why? Because the Pap test is not 100% accurate even when performed correctly -- and missed the dysplasia that has been slowly turning into cancer for years.

What are we to do? Is this a damned if we do -- damned if we don’t disease? Not at all! One, if you have an abnormal Pap test the next step should be to have a HPV test! It’s only logical to assume that if you have abnormal cells, you should identify whether or not they’re abnormal due to HPV. If you don’t have HPV, then it can safely be assumed that you are NOT going to have dysplasia or cancer -- and continue with your regular Pap tests. If you do have HPV, then you should continue on with the next step. Whatever that step is -- it should be made as an informed decision, not a hasty and rash one.

 
Old 06-20-2007, 02:40 PM   #15
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Re: Cervical Cytology 101

[QUOTE=MichelleNTX;3056021]I see you're somewhat frustrated by the fact that you have been touched by dysplasia, and probably went through a lot of stress about it.

Is there anyone who is not stressed by displaysia? I think that would be an odd response. It doesn't frustrate me, but it is frustrating to think that there are a lot of types of people out there and some of them just want to be told what they want to hear: which is that displaysia will go away on its own or that it is not going to turn into cancer or that they don't really need a LEEP or that they can cure it on their own. I think we really have to consider what our advise to might lead people to do, or NOT do, and what the consquences of that might be.

60 years ago, no one ever biopsied a healthy cervix. We were all safe from doctors trying to biopsy our healthy bodies. If you got cervical cancer - or any other type of cancer, you usually found out about it right before you died. In developing nations this is still the case today. People die of cervical cancer all the time because they couldn't get a pap, even if they knew what one was. But in the US and other developed nations, today, if a woman has a LEEP and it comes back clear and she never had anything wrong, well, then, great! That woman can be sad that she was one of the few who ended up with an unecessary procedure, thrilled that she is healthy (how many of us would have given anything to have our LEEPS come back as clear and unecessary???) but be glad that she has the opportunity to particpate in a medical system that saves so many lives.

You wrote:
"If you donít have HPV, then it can safely be assumed that you are NOT going to have dysplasia or cancer -- and continue with your regular Pap tests."

You know, on one hand, I need to pack...but this statement is (no offense) a risky thing to say on a board where very concerned people are looking for advice. I actually don't think it is allowed. You can't say that anyone can safely assume they won't get cancer because you do not know if there is a woman out there with HGSIL and a false nagative HPV test or a whole lot of other potentials that don't involve HPV but do involve cancer, or might eventually. We would all like to hear that we have nothing to worry about, but some of us DO have something to worry about (or might) and I think you need to be careful with these absolutes and maybe remind people that you are not a doctor and they should talk to their doctor, before deciding they have nothing to worry about.

I know you post a lot of research on this board so I am sure you have read that there is a "causational relationship" relationship between HPV and cancer, but it is not truly causational. Which is obvious when you think of all the millions of people who have HPV and who will never have a single moment of cervical trouble. You can have one without the other. In fact, you can get cervical cancer from having endometrial cancer, so there is just one known way right there. If you have an abnormal pap you need to find out what is going on and treat it. What caused it is over and done with. It is what it is now and you have to move on from where you are today and make sure you don't get anything worse because even if you don't have kids there are people in your life who are expecting you to make smart, responsible choices about your health.

HPV is a factor but HPV tests can come back negative when a person is, in fact positive. I have had both a positive and a negative test myself, so I put literally no stock in that test and neither does my doctor. Not treating a cervical abnormality and putting all of your hope on an HPV test (which is as likely to be out of whack as a pap) seems really foolish.

I know it feels better, especially if you are young, to decide that bad pap results are usually meaningless and to encourage others to do the same, but countless women in developed nations are NOT DEAD because (and only because) of these procedures and I stand by my statement (and know that my doctor and other doctors would agree) that any pre-cancerous condition needs to be examined/treated/monitored agressively and with everything that we are so lucky to have available to us.

Kim

 
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