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Cancer: Cervical & Ovarian Message Board


Cancer: Cervical & Ovarian Board Index


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. [B]Paps DO NOT diagnose or grade abnormalities in the cervix.[/B] 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. [B]LEEP is invasive, and it carries risks[/B] -- 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.
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
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. :dizzy:
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. :)
From eHealthMd.com:

What Do Abnormal Pap Test Results Mean?
At least half of all women (50 to 80 percent) whose Pap smears are classified as abnormal

- don't have cervical cancer

- don't have a condition that will become cervical cancer

For a woman who has regular Pap smears, abnormalities detected by the test are most apt to be very early precancers. It can take as long as 10 years for these conditions to become cancerous.

The Pap smear is a screening procedure. It is used to detect cervical abnormalities in women who do not have any symptoms. It is not a diagnostic test. Diagnostic tests are performed to identify the cause of symptoms a woman is experiencing. The Pap smear can indicate the presence of abnormal cells but cannot indicate what conditions those abnormalities represent.

Abnormal Pap smear results do not

- identify the abnormality

- indicate whether treatment is necessary

- indicate what treatment is most appropriate

Abnormal Pap smear results do indicate the need for

- repeat screening

- diagnostic testing

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

How good does this make you feel about your pap results now?
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!
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 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!
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.
[QUOTE=mrbonesmom;3055524]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[/QUOTE]

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.
[QUOTE=kittycatjj;3055562]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 ...[/QUOTE]

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. [B][I]Only a biopsy can diagnose CIN or Cancer[/I][/B].

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? :)
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!
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! =)
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
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.
[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
Hi Kim,

I know your last post was meant for Michelle, but I thought I'd chime in with my two cents anyway. :)

You said in your last post, "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."

Yes, I think all of us on this board would love to hear that all types of dysplasia is no big deal and can go away on its own accord! But I'm not so sure I know of *anyone* (on this board and women I know personally) who is taking dysplasia lightly, regardless of the level of dysplasia. With that in mind, I think you know from my older posts that I'm doing a watch-and-wait rather than a LEEP option in conjunction with a health/supplement regimen. The body has a remarkable ability for self-healing and as I am young and healthy, I will give my body a few months to deal with my CIN I/II. Michelle and others have stated that in many cases, dysplasia can regress-- of course, the more advanced the dysplasia (CIN III), the less likely it will regress without treatment. This is not to say that women diagnosed with dysplasia should just chuck their results aside and continue their lives as usual-- of course not. But like I said, I think many women take it seriously and follow the steps necessary to combat the dysplasia. And you're right-- we are extremely fortunate to live in western nations where we have access to routine screenings.

However, you also said: "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."

I personally would hate to be that woman who had a LEEP and it turned out to be completely unncessary. I do know it's a highly successful treatment with a low recurrence rate and risk of fertility complications-- BUT there it is! The LEEP and other treatments are not going to cure us 100%! Nor is there a 0% chance of adversely affecting our fertility! So yes, I'd be pretty upset if my doctor did a LEEP and it turned out to be benign-- there's still a chance I could get scar tissue that would hinder my chances of conceiving and there's a chance of cervical incompetence that could make me more likely to deliver pre-term. These percentages are small, yes, but there *is still a risk.*

I am grateful we have choices now whereas 60-70 years ago we would've all been in the dark about this. But I believe now that doctors are being much too aggressive with the LEEP as it's a quick, cheap and easy procedure for them to perform (compared to laser which carries less risks of cervical damage but is much more expensive). I'm not going to hastily have an invasive procedure performed on my cervix when I still have some time to see if my body will self-heal. And if that doesn't work, well then at least I'll have tried another alternative and feel confident enough to go ahead with a LEEP. But if I do a LEEP now, I think I'd always wonder if there weren't any other options beforehand. But that's just me! :)

I think the bottom line is that women should be informed and do their homework before blindly adhering to one doctor's advice. I think all of us on this board are all intelligent and informed women who know what's going on with our bodies and make our own decisions based on what we feel is right for us and taking into consideration other women's stories on this board. I think this HPV/dysplasia plight we all go through is also a great (if we can call HPV great in anyway!) way for us to keep close tabs on our health AND to really be proactive about our health. The only way we can truly speed up and aid the suppression of the virus is via a healthy lifestyle and diet, and I know this can only benefit us overall by amping up our immune systems. I appreciate your opinions Kim and I do hope that you start getting normal paps again soon! Ahhh, doesn't "normal pap" sound so nice? I'm sure that's all in store for us soon! Take care ladies.
Bravo Kim! that was an excellent post!

BTW, when a woman's doctor recommends a leep based on cytology (pap)...

If the hgsil cannot be confirmed on colpo/biopsy or via ecc, then guidelines DO recommend a review of the cytology. If the cytology is still indicating a high grade abnormality it IS recommended to have a cone biopsy (LEEP of CKC) to rule out a hidden lesion, particularly if the colposcopy is unsatisfactory (meaning a lesion cannot be seen or the transformation zone can not be seen in its entirety). Michelle, the guidelines you reference from the asccp I believe do state this.

An Aside.... Years ago I doubt a death from any kind of gynecological cancer was even acknowledged as such.

There is also an issue for women whose mother's took DES, a drug that was to help avoid miscarriage. Women who have been exposed to DES in utero can develop cervical cancer as a result, and also have other gynecological issues. A blanket statement that if you don't have hpv you won't get cancer or pre-cancer of the cervix is false.

In Canada, they don't do the hpv test unless you specifically ask for it and pay for it. They don't tell you about it. They also do not use the thin-prep pap test. In Canada we rely on the standard pap test, and there are protocols that are followed for call backs and abnormal results. Is it perfect? Not a chance, but what is?

Sorry for rambling. Feeling a bit on fire right now...I could go on, but I'd better not.
[QUOTE=mrbonesmom;3056174][QUOTE=MichelleNTX;3056021]
Is there anyone who is not stressed by displaysia? I think that would be an odd response.[/QUOTE]

Actually, yes! I do. I have a friend who had (years ago) dysplasia, and didn't think twice after having cryo. Actually, she didn't think much about it beforehand either. One's natural response is to worry about any health problems they may have. It's also a natural to be positive and to want to learn about the disease that is making you ill. What I find facsinating however, is that people (such as yourself) will worry about a totally curable disease -- yet, they don't think twice about lighting up a cigarette which will kill them before HPV will.

Honestly, if you read through all of my posts -- you will find statement after statement where I tell women NOT to ignore their yearly Pap tests, and to follow-up any abnormal Pap result. Why do I emphasize this over and over? Because [B][I]Pap tests ARE NOT reliable[/I][/B]! Hence, the reason for this very thread! It irritates me when people read (or in this case, don't read) hidden agendas into someone's posts. Did I EVER state, "Don't get a Pap test?" No, and I never will.

And YES! I stand by my statement about the correlation between HPV and dysplasia/cancer. Why? Because every study shows that ACTIVE HPV is required to induce abnormal cells (dysplasia). EVERY study! I had posted such a study in this very thread -- but it was deleted because I had posted the URL link to it. So it's not a "risky statement" when you have the medical community doing (and backing up) the research I mearly repeat here on these boards.

Also, I think you're not realizing something about HPV. [B][I]There are SEVERAL strains of HPV[/I][/B]. A handful of which are considered high-risk, and in particular two strains (16 and 18) are considered to cause the majority of cervical cancers. While some strains of HPV can cause cervical cell changes (i.e. abnormal Pap results) -- your body is more able to fight off the infections of these strains -- thus, never progressing into cancer! The more high-risk strains however, are more sturdy -- and agressive strains. These strains are harder for your body to fight off -- and can progress to cancer if not treated! How do you know which strain(s) of HPV you have? Duh! You get an HPV test! It not only tells you if you have the strain, but if it is a high-risk strain. Your "mixed" test results merely tell me that you may have had several strains. Also not uncommon. Your body may successfully fight of strain A today -- but tomorrow, strain B is giving you a run for your money.

Also -- since your cervix can react to different things (HPV, inflammation, infection), a HPV test will be a more effective tool in fighting cervical cancer than a Pap test ever could hope for. Do a (g)oo(g)le search for "New York Times HPV Test Accuracy". Read the first result (it's a New York Times article), and tell me what you think.
I agree 100% that we are lucky to have these medical treatment options. Though I am not excited for the LEEP and I know the risks...my priority is to aggressivly do whatever it takes to save my life. Who knows what will happen, I may never be able to have children, the LEEP may not "cure" me but it is the decision I felt I am most comfortable with. To each their own, we all have to make our own decisions, one decision is not "right or wrong" as it is a *personal* choice.

On another note...ovarian cancer-is there any type of screening for this? Being where I am at with potential cervical cancer makes me want to be just as careful about ovarian, which is more serious than cervical.

Now lets all agree to disagree and get along :D
[QUOTE=karen32;3056238]Women who have been exposed to DES in utero can develop cervical cancer as a result, and also have other gynecological issues. A blanket statement that if you don't have hpv you won't get cancer or pre-cancer of the cervix is false.[/QUOTE]

Not false actually Karen. As the drug was discontinued in 1971, and was found to be associated with less than 1% of all cervical cancers -- it can be concluded that the current population of cervical cancers is caused by HPV, and NOT DES. And even studies today can only link DES as a [I]contributing factor[/I] of cervical cancer -- and cannot link it as a CAUSE. To date, there has not been one other identifiable CAUSE of cervical cancer! Period.
[QUOTE=MichelleNTX;3056264][QUOTE=mrbonesmom;3056174]

And YES! I stand by my statement about the correlation between HPV and dysplasia/cancer. Why? Because every study shows that ACTIVE HPV is required to induce abnormal cells (dysplasia). EVERY study! I had posted such a study in this very thread -- but it was deleted because I had posted the URL link to it. So it's not a "risky statement" when you have the medical community doing (and backing up) the research I mearly repeat here on these boards.
[/QUOTE]

Michelle, with all due respect...EVERY study? What about small cell cancers of the cervix? what about the des exposure? what about the women who have been diagnosed with a cervical cancer and tested negative for hpv? Does this mean they are truly negative for the virus? I don't know, but I'm not going to presume they are or are not. There is a reason that the gardasil ads state 75% of cervical cancers are caused by hpv. Yes, it is likely the number is much higher (in the 90% range is my personal belief), but it is not 100%.

Is there a correlation between hpv and cervical cancer? Yes, definately. But don't state that you must have hpv in order to develop cervical abnormalities. Rarely is anything 100% absolute.
[QUOTE=MichelleNTX;3056336]Not false actually Karen. As the drug was discontinued in 1971, and was found to be associated with less than 1% of all cervical cancers -- it can be concluded that the current population of cervical cancers is caused by HPV, and NOT DES. And even studies today can only link DES as a [I]contributing factor[/I] of cervical cancer -- and cannot link it as a CAUSE. To date, there has not been one other identifiable CAUSE of cervical cancer! Period.[/QUOTE]


Obviously we were posting at the same time. Well, since there is not one other identifiable CAUSE of cervical cancer PERIOD, I will assume that you are much better versed in this subject than I. Period.

And yes, i found the study stating hpv18 is responsible for small cell, so don't worry about searching that out for me.

I am happy to admit when I am wrong.
Karen -- I've read many articles and studies on the matter of the HPV connection. Since the discovery of the HPV connection to cervical cancer (and also anal, vaginal, and some oral cancers) -- it can not be ignored that 30+, even 20+ years ago, before we knew of the HPV connection -- that it was uncertain of what was cause, and what was contributing factor for cervical cancer. Only now can we determine (by NUMEROUS studies world-wide) that the women who took DES were exposed to HPV at one point or another. Unfortunately, we didn't have the HPV test back then.

Oh no, here's another one of my boring copy/pastes:
----------------
Are there other causes of cervical cancer?
High-risk types of the HPV virus are the cause of cervical cancer.

However, other factors can increase the likelihood that an HPV infection develops into cervical cancer:

- Exposure while in the womb to a medication called diethylstilbestrol (DES), which was prescribed to many women to prevent miscarriage between 1938 and 1971.
- Infection with chlamydia or herpes simplex virus type 2 (both different types of sexually transmitted diseases).
- A first-degree relative (mother or sister) with a history of cervical cancer, which the International Journal of Cancer reports increases personal risk three-fold.
- Conditions that weaken the body's immune system, such as HIV/AIDS.
Smoking, which interferes with the body's ability to fight off infection. [In fact, one study showed that smokers are 60 percent more likely to develop cervical cancer, and former smokers are 12 percent more likely.]
- Low levels of folic acid (a type of Vitamin B).
- There also are some data that suggest that long-term use of oral contraceptives (10 or more years) may increase the risk of some types of cervical cancer.
----------------

Again, I'm merely posting articles and research done within the last 8 years -- since the discovery of the HPV correlation.
[QUOTE=karen32;3056367]And yes, i found the study stating hpv18 is responsible for small cell, so don't worry about searching that out for me.[/QUOTE]

LOL -- I was posting again...and was going to go back to the other points made. But yes, it's amazing that a COMMON virus that's been around for (God knows how long) can cause so much upheaval in our lives. BTW -- I'd never tell someone they were wrong, I love a good debate (even when I am wrong). ;)
LOL, but it IS hard to debate when we're always posting at the same time!!!

For me, personally it doesn't much matter whether I have the virus or not. I deal with the fact that I had abnormalities and cancer and I just make sure to adhere to my protocol for follow up. Now that may mean that I have to educate my docs along the way though, because I'm pretty sure in about three years they'll tell me I can discontinue. No way that's going to happen though.

I guess my own personal experience makes it hard for me to relate to gals who are getting a high grade result and talking about leep, laser, fertility, etc. I do understand, but I also know that the 1% chance of not fitting the statistics can and does happen. I can personally see the benefit of having tissue excised and analyzed at pathology. I always, always recommend that any woman who is uncomfortable with a treatment plan sit down and discuss with her doctor WHY he wants to employ that particular treatment. There may be a reason he is advocating an excision versus a laser or cryo.

If I could go back I would have told my gyn I wanted a cold knife cone done instead of a leep. If I could go back, I would have had the gyn actually catch the microinvasion on colpo biopsy and have dealt with it differently. If I could go back I would have been adamant my gyn refer me to a gyn-oncologist the moment my leep biopsy came back containing cancer.

Anyway, I do agree with your original post, that the pap smear is a SCREENING tool. Heck, I had a false positive (maybe) moderate result nine months after my leep that scared the HECK out of me. They couldn't find anything on an unsatisfactory colpo. I am still furious that they did not do a leep to make sure nothing was lurking. I am furious that they removed a polyp and apparently did not send it to pathology - there is no path report on it. I am so glad I set up an appointment with a gyn-onc and discussed my options. I am sorry that you have not had a positive experience with the one gyn-onc you saw, and I do hope you can switch to the other one and get the information and reassurance you need. Because if you are not comfortable with your treatment plan, there's a good chance it won't work as well.

Sorry it's a long post.
[QUOTE=karen32;3056367]Obviously we were posting at the same time. Well, since there is not one other identifiable CAUSE of cervical cancer PERIOD, I will assume that you are much better versed in this subject than I. Period.


Hi Karen,

Actually, you are not wrong. I found several, highly technical and deathly dull studies online about how a certain percentage (small but still there) of cervical cancers were caused by endometrial cancer (showed up as displaysia or "suggestive of cancer" on a pap WITHOUT endometrial cells. I was a lot more worried about having endo cancer since I had all of the symptoms for a long time and had not had a endo biopsy until recently so I really researched the heck out of it, and did not like what I read (that my displaysia could have been caused by and connected to endo cancer) but there it was. Also, my 11 year old got guardisil today (yippee!) and her doctor (and my doctor also) said that HPV does not cause all cervical cancers. (plus, the literature I got in the office today said this as well.)

I think the real risk here is that there ARE women who will surf along the web and read posts from forums like this (never joining in, just getting quick info) and if they read someone saying that if you test negative for HPV you have no worries of either displaysia or cancer, they may not seek treatment. How many might be false neg. HPV tests (?) which happen failry often since one did happen to me. I also posted where I read in several places that a big factor in newly diagnosed cervical cancers were from women who went many years without follow up or treatment after a bad pap.

The kind of women who let a bad pap motivate them to take assertive, educated action are not the majority posting here, obviously, but they are out there. I know also that there are doctors who don't want to stress their patients out prematurely, so the doctors tell their patients they have "nothing to worry about" assuming probably that they will still get follow up care, but then these women DON'T follow up for 5 or ten years or more, which can lead to cancer or really awful displaysia.

I just think we have to be cautious not to say anything that #1) doctors and medical literature disagree with, and 2) might give some quicky web surfer the "excuse" they need not to follow up. Sometimes all it takes is laying off the absolutes without a medical degree, and also, saying that one is not a medical professional, espeically if one is quoting medical studies directly, instead of paraphrasing and saying that they "heard this or that" which definitely would not be confused with a real medical professional.

Take care,

Kim

Kim
Kim, I would be interested in these studies you speak of -- as I cannot find any such studies when I try to do a search through the search engines. And, in fact what I did find was completely the opposite -- suggesting that HPV may play a role in a percentage of endometrial cancers. But again, I may not be reading what you are.

Regarding your statements about HPV tests being "false negatvie"; or having a positive result one test, and a negative result the next -- I posted this in another thread, but will again post here for the sake of this discussion. An excerpt from the American Society for Colposcopy and Cervical Pathology reads:

"Most people (up to 90%) who test positive for HPV with very sensitive tests for HPV (polymerase chain reaction [PCR] and Hybrid Capture 2) will become HPV negative on the same tests within 6 to 24 months from first testing positive. This is due to an effective immune response to HPV. What is not known is whether this means that the virus is actually eliminated from the body or just suppressed to such a low number of HPVs (as in latency) that even these sensitive tests cannot detect it. Whether it is completely eliminated or just suppressed does not matter because most people who have an effective immune response to HPV do not ever have lesions develop from this HPV infection."

Since any test for HPV subtype is limited to only that subtype or group of subtypes, it will miss a certain number of HPV infections. The combinations that have been screened for often include the most common types associated with malignancy. No one knows what other types will be missed so it is only a guess as to how accurate a test is. In general, positives are positive, i.e., there are very few false positive tests. If you are tested positive for say type 16, 18 HPV, then that result is probably 95% certain. The opposite is not true, however. If the test is negative, you could have been exposed to some other type.

I am wondering -- how can you dispute the solid facts, and basically state that the HPV test is not an important weapon against fighting cervical cancer? It's proven to be far more accurate than the Pap test -- and has already saved many women from going through procedures that are not necessary. Additionally, I ask you again to re-read my initial post -- or any of my posts in these forums. I have stressed nothing but the utmost importance of getting regular Pap tests, and following up on any abnormal Pap result. Because of the high margin of error with Pap tests -- the HPV test is another weapon in our arsenal to catch this disease before it becomes an invasive cancer.
[QUOTE=MichelleNTX;3058922]

I am wondering -- how can you dispute the solid facts, and basically state that the HPV test is not an important weapon against fighting cervical cancer? It's proven to be far more accurate than the Pap test -- and has already saved many women from going through procedures that are not necessary. Additionally, I ask you again to re-read my initial post -- or any of my posts in these forums. I have stressed nothing but the utmost importance of getting regular Pap tests, and following up on any abnormal Pap result. Because of the high margin of error with Pap tests -- the HPV test is another weapon in our arsenal to catch this disease before it becomes an invasive cancer.[/QUOTE]

Michelle, I am not reading that Kim is disputing the importance of the hpv test. What I am reading is that if someone tests negative on an hpv test, this does NOT mean that person is not experiencing some kind of cell changes or cervical cancer. There are several instances that I know of women receiving a negative hpv test and they HAVE cervical cancer. You're right, the hpv test does typically capture whether the virus is present or not, but it, like any other test is not one hundred percent fool proof. Just because you test negative for hpv does not mean you are in the clear, particularly if you have a pap that comes back showing high grade changes OR you have a visible tumor on your cervix.

Yes, the hpv test is very important and can be an effective tool to further reduce the number of cases of cervical cell issues and catch abnormalities before they become invasive. But isn't it more effective if your pap is reading ascus - atypical or low grade versus a high grade result? Certainly if you are recieving a high grade pap result, it MUST be followed up on regardless of whether you test positive for hpv or not. And in 75% of the cases of a high grade result, that is what will show up on biopsy (I believe I read that somewhere once, but don't have the article or the time to go and search for it). Standard of care is that if there is a high grade result, it must be followed up on, AND they strive for correlation between cytology and biopsy. Thus, if you have a high grade cytology and yet they cannot find anything during the colpo, that is also a red flag for further investigation. I do believe the asccp guidelines state this, but again, I have not reviewed them today (I've reviewed them many, many times though).

Bottom line for me is this. I think the test is most useful when you are seeing an atypical result, a positive hpv test will encourage docs to explore further to ensure there is nothing sinister going on. Honestly, if you are getting a high grade pap result, I really don't think it matters one way or the other if you test positive for hpv or not. It really doesn't. Because you still have to explore the high grade result. Now, if you have an ascus/atypical smear and you test negative for hpv, then I think probably it makes a doc comfortable recommending "come back in 6 months". But I'm not a doc, so I can't say for sure.

The unfortunate fact is, that despite regular pap screening and even regular hpv testing, there will still be women who do not fit the statistics. There will still be a woman who tests normal for years on her paps, and if she is testing normal, they are NOT going to repeat an hpv test every smear, are they? I mean, in a utopian world, sure...but cost limitations will play a role. There will still be women who develop cervical cancer without ever having an abnormal pap test or positive hpv test. It won't be many women, for sure, but there will be women who do! Surely you can agree with that?

I think this is what Kim is trying to get at, if I may give my opinion on what I am reading in her post. Maybe I'm wrong? I don't know. But I thought I'd throw it out there anyway.
Hi Karen,

Yes, you are correct in trying to explain what I am saying and please feel free to say so! :-) With Michelle admitting that HPV tests can and do come back negative, when they are in fact positive, and then saying that if a woman has a negative HPV test, she has 100% no worries for either displaysia or cancer...well, that is where all this started. Depending upon who reads that statement, it could have bad results.

My doctor (who has more than one month learning about HPV and cervical cancer) says that the most important thing is what you have now, and with bad paps, the first step is finding out exactly what you do have via biopsies and LEEPs and cones. She says we need to focus on what IS to get what IS to a healthy place, and then go from there to keep ourselves healthy with whatever we chose (she actually doesn;t put much stock in herbs but says go ahead, it can't hurt if you're careful.)

Really, having a doctor you feel that you can trust 100% is a thing worth finding. I am so thrilled with my doctor and really feel as if we are partners in getting and keeping me healthy. The other thing is follow ups. Of critical importance.

Kim
Kim, you are absolutely 100% correct when you say that having a doctor that you are comfortable with and trust is a big step in the battle we face when we are dealing with an abnormal pap. My family doc really downplayed the severity of my abnormal smear. Told me it was likely because I had given birth the year before. Best advice I ever got was to always get a copy of your reports. ALWAYS. That way, at least you have a concrete idea of what you are dealing with. And sometimes you find out some things too ;)

If you can't get reassurance from your doctor, or can't get your questions answered by your doctor, then you need to find a new doctor! I have a feeling you've been down that road before, as have I.

Glad to hear I was reading your post accurately :)

I believe as your doctor does. It doesn't matter to me so much what "caused" my cervical cancer. What matters is that it happened and what can I do to ensure I stay healthy.
[QUOTE=MichelleNTX;3058922]Kim, I would be interested in these studies you speak of -- as I cannot find any such studies when I try to do a search through the search engines.

Oh, I know! I am just really good at it, having done medical research online for 11 years now, ever since my gallbladder went bad and my doctor wouldn't ultrasound it. Anyway, I have this knack for digging up studies meant for the medical profession. They are usually hard to read but my undergrad degree is in research, so I can figure it out. I didn't save them since I wasn't planning to use them for anything but my own use, but I bet you could just go ask any doctor: Can cervical cancer or displaysia be caused by endo cancer? Or perhaps more accurately: can endo cancer PRESENT as displaysia, which was what the one paper was about.

You wrote: An excerpt from the American Society for Colposcopy and Cervical Pathology reads:

I think it is really great when you do post exactly where these cut-n-paste things came from. The internet is chocked full of whackos and incorrect information and when people don't know where it is coming from, they really can't give it any credence.

You wrote:
The opposite is not true, however. If the test is negative, you could have been exposed to some other type.

Then I really have no idea why you would tell women that if they have a negative HPV then they have no chance of cancer/displaysia, etc. That makes no sense.

I have never smoked a day in my life. I get my teeth cleaned every six months and drive a volvo. I started getting paps at age 17 and have gotten a clean one every year since. Then I went for three years without a pap. I know why. I was being literally tortured by my doctor's ridiculous "wait and see" approach to my bleeding disorder, an outright refusal to test or biopsy anything, and didn't want to go near the place. Why else would anyone wait a long time between paps? Maybe this is a topic for a new thread.

Here is the thing we must agree on: we are not doctors but we have a lot of personal experience we can share with others along with encouragement and support. No one who has even been researching this online for a decade can dispense medical advise or contradict what people's doctors say. Everyone's research, understanding, viewpoints and knowledge should be respected, not bullied away with internet quote that seem to contradict the other person. (not everything online is true, right?) And we should all be aware of the people we never meet, who might read our advise, and try to be as responsible as possible.

Kim
[QUOTE=mrbonesmom;3059066]Hi Karen,

Yes, you are correct in trying to explain what I am saying and please feel free to say so! :-) With Michelle admitting that HPV tests can and do come back negative, when they are in fact positive, and then saying that if a woman has a negative HPV test, she has 100% no worries for either displaysia or cancer...well, that is where all this started. Depending upon who reads that statement, it could have bad results.[/QUOTE]

Kim -- I'm trying to explain this to you as simply as possible. I'm not having much success however, and can only assume you do not want to hear the facts. With that said, I never stated that there were 100% no worries if you took an HPV test and it was negative -- nor do I imply that! If you re-read what I said, I stated: "One, if you have an abnormal Pap test the next step should be to have a HPV test! Itís only logical to assume that if you have abnormal cells, you should identify whether or not theyíre abnormal due to HPV. 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."

Not anywhere in that statement does it say "no worries" -- and I probably should have clarified my statement by saying, "If you don't have a high-risk HPV..." To which I stated in my next comments: "There are SEVERAL strains of HPV. A handful of which are considered high-risk, and in particular two strains (16 and 18) are considered to cause the majority of cervical cancers. While some strains of HPV can cause cervical cell changes (i.e. abnormal Pap results) -- your body is more able to fight off the infections of these strains -- thus, never progressing into cancer! The more high-risk strains however, are more sturdy -- and agressive strains. These strains are harder for your body to fight off -- and can progress to cancer if not treated! How do you know which strain(s) of HPV you have? Duh! You get an HPV test!"

I will clarified these statements further (if at all possible) with this scenario -- maybe this will be simple enough for you to understand:

Say I have an abnormal Pap test that indicates low to moderate grade dysplaisa. My doctor wants to do an HPV test. Why? To identify whether or not I currently 1) have an active strain of HPV; and 2) have a high-risk strain of HPV. Why is this important to me? Well, having an active strain of HPV, means that my cervix needs to be more closely watched, as only an active strain of HPV can cause cervical cell changes; AND if it is a high-risk strain of HPV my risk of cervical cancer increases! Whew! Now, if the test is HPV negative, that doesn't mean I don't have HPV and it certainly doesn't mean that I don't need to continue to be tested. Why? Well -- there are MANY different strains of HPV (as I've tried to explain to you before). The HPV test tests for the most common, and the most aggressive strains of HPV -- the ones that are important to ME and my cervical health! And just because I don't test positive for (for arguments sake) HPV 16 now -- doesn't mean I won't get it and become positive later. Also -- the less aggressive strains of HPV (the ones not associated with cervical cancer) can still cause my cervical cells change (i.e. dysplasia) -- but guess what, when the virus is no longer active -- the dysplasia will go away on its own WITHOUT ANY treatment! Why? Because these strains DO NOT CAUSE CANCER! Cool, huh!

So, one more time now -- if you have mild to moderate dysplasia, wouldn't you rather know which strain of HPV you have so you can try to avoid a procedure that would not have been necessary because the strain you had was not going to mutate into cancer in the first place and it just needed to run its natural course??!!

And P.S. I NEVER SAID "if they have a negative HPV then they have no chance of cancer/displaysia, etc.". An HPV test (if you've ever had one you know) -- tests for 1.) ACTIVE HPV, and 2.) the AGGRESSIVE CANCER-CAUSING STRAINS. If your test is NEGATIVE, you WILL NOT GET CANCER from your current dysplasia! That DOES NOT MEAN you 1.) won't get a cancer-causing strain (hence, my "and continue with your regular Pap tests." comment in my very first response to you!) Now, why would I have said that -- if I had said what you claimed. What I did say is that if you are currently HPV negative (for an active aggressive strain) -- then it could be safely assumed that you do not have cancer (CURRENTLY)! You read WAY TOO MUCH into my statements. So yes, I do agree with you on one point -- "Depending upon who reads that statement, it could have bad results."
[QUOTE=mrbonesmom;3059084]
Oh, I know! I am just really good at it, having done medical research online for 11 years now, ever since my gallbladder went bad and my doctor wouldn't ultrasound it. Anyway, I have this knack for digging up studies meant for the medical profession.[/QUOTE]

Okay, I'm proud that you know how to use computers for "digging" up studies? I've been a computer programmer since 1989. And that means what? Not a whole hell of a lot if I don't know what I'm doing; or understand what I'm actually "digging up". But since both my sisters are medical transcriptionists -- there's not too much medical jargon I don't understand.

[QUOTE=mrbonesmom;3059084]
I think it is really great when you do post exactly where these cut-n-paste things came from. The internet is chocked full of whackos and incorrect information and when people don't know where it is coming from, they really can't give it any credence.[/QUOTE]

As the posting of outside links are prohibited on these boards (and have had posts deleted for doing such), I posted the source of the information. I thought you were good at "digging" up information? Try doing a search for "American Society for Colposcopy and Cervical Pathology".

[QUOTE=mrbonesmom;3059084]
Then I really have no idea why you would tell women that if they have a negative HPV then they have no chance of cancer/displaysia, etc. That makes no sense.[/QUOTE]

Again, if you know anything about the HPV test -- it doesn't test for ALL 100+ strains of HPV, but it does test for the aggressive cancer-causing strains! If your HPV test is negative, it merely means you don't have an active (and/or) aggressive cancer-causing strain of HPV.

I can continue typing and debating this, but I'm here to help educate. I have no intention of giving anyone advice. I have told several women here -- "It's YOUR body". But so many women come here "freaked out" -- looking for answers. I post facts and studies...it's up to you to make your own decisions on what you want to do with that information.
Michelle, I do not understand how come you are being so defensive with your posts to Kim. You've already stated you like to debate, but you are really undermining your position when you start implying that Kim chooses to ignore facts or you can't explain it simple enough for her. Or implying that it doesn't matter what your job is if you're not any good at it. But given that she is probably on a plane right now, she likely doesn't care.

Listen, we all get what your point is. The hpv test is valuable in determining a course of action for follow up for abnormal smear results. HOWEVER, I do not and will not agree with your statement that if you test negative for a high risk type of hpv then you will not get cancer from a current lesion that may be present.

You said: (statement one)

"One, if you have an abnormal Pap test the next step should be to have a HPV test! Itís only logical to assume that if you have abnormal cells, you should identify whether or not theyíre abnormal due to HPV. 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 said: (statement two)

"An HPV test (if you've ever had one you know) -- tests for 1.) ACTIVE HPV, and 2.) the AGGRESSIVE CANCER-CAUSING STRAINS. If your test is NEGATIVE, you WILL NOT GET CANCER from your current dysplasia!"

Remember, we have a poster who recently posted she had a high grade pap smear and negative hpv test. Are you seriously going to say that she can safely assume she is NOT going to have dysplasia or cancer on her colposcopy for the current high grade cytology result? (statement 1) Of course not! Are you really going to say to a woman who has had a negative hpv test and cervical tumor that she can safely assume that she is NOT going to have cancer from her current dysplasia when a tumor is already visible? (statement two) Of course not! Why?!? [I]Because you cannot know absolutely 100% that she won't![/I] You can quote facts and studies that state she shouldn't until the cows come home, but you will not know absolutely 100%! Wouldn't it be wonderful if we could rely on facts and studies as absolutes!?! But we can't.

This is what Kim is trying to get at. Those statements can be very damaging for someone that peruses posts without taking a whole lot of time to stop and educate herself about what is happening with her body. If they are misconstrued and someone says "oh, I had a high grade smear result but negative hpv, I can safely assume that if I DO have dysplasia it's not going to turn into cancer, I'll leave it for another year because I really DON'T want to have to go through another moment of having my legs in the stirrups." ... What are the statistics on women who do not go for their smears when they are supposed to? And why do they not go? Because it puts you in such a horribly vulnerable position. I have friends who will not go for a smear test for that very reason! And they know my history!!! Do you think that they are more likely to follow up on a high grade result if they read they can safely assume they will not get cancer from their current dysplasia?

I would venture a guess that Kim has already reviewed the American Society for Colposcopy and Cervical Pathology site. By the way, what I read from her message is that she thought it was good that you posted the source of your information, because it ADDED CREDIBILITY to your posts because it is a very accurate source, unlike other sources of information out there - Beta Mannan anyone?

I would also venture a guess that you and Kim have found the recently updated (2007) cervical screening guidelines from the National Comprehensive Cancer Network. The interesting thing about those guidelines is that they have specific information about WHEN an hpv test should be done. I believe they also state that if a pap comes back as high grade cell changes there is really no point in doing an hpv test as 90% of them will come back positive for a high risk type of the virus. Notice they don't say 100%. Because there are NO ABSOLUTES! [B]edit: [I]I went and reviewed the NCCN guidelines and this is not stated there. My apologies for the error. I did read it somewhere though, just cannot at the moment remember where. I will update if I do find the article...edit update: a variation of this information is actually found on the asccp faq's where it states that hpv testing when there is an LSIL or HSIL pap is not helpful as the majority of women will test positive for a high risk type of the virus. end update [/I][/B]And, as I posted previously, it really does not matter if hpv is present or not, if you have a high grade result it [B]MUST[/B] be followed up on.

Perhaps if you considered revising your position to state if you have an atypical or low grade smear, then an hpv test can be very beneficial in determining what type of follow up you should be having: ie. watch and wait (with a negative hpv result) OR colposcopy with biopsy (with a positive high risk result).

I don't know Michelle. I don't want to get into this a whole lot more. I've stated my position, I've conceded when I've not had the depth of information that you have regarding the cause of cervical cell changes and cervical cancer. This will likely be my last post in this thread, unless someone has something to say that really compels me to answer.

[B]Please, any woman who reads this[/B]. If you have a high grade smear result, do follow up on it with a colposcopy, regardless of if you have a negative hpv test, regardless of if your doctor makes it sound like it's no big deal. Follow up and find out [B]FOR SURE[/B] what is happening with your body. I think that is what EVERY poster in this thread is advocating!
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