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Old 02-25-2009, 12:12 PM   #1
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Severe dysplasia / CIN III without HPV?

Hi all,

I had a colposcopy done last week after two abnormal paps for the first time ever in my life (I'm going on 28 years old), and just got the results yesterday that I have severe dysplasia. I'm floored, scared, and just flat out crushed. I know it's not necessarily cancer, but nonetheless I have never had any significant health issues before. I have a LEEP procedure scheduled for March 12th, and although I'm not horribly nervous about the procedure (well maybe a little), I am terrified that they will determine it's actually cancer or the LEEP will not remove all the dysplasia and I'll battle this long-term.

Anyway, I have two questions:

1. I tested negative 3 times for HPV (once back when I was 24, once in November and again this year when they did the paps that came back abnormal)... how could I have severe dysplasia without HPV?

2. I had a normal pap earlier last year (can't recall the date), then had a problem come up in the fall I believe and they did a pap then as well, and that's when the abnormal results came back. How can dysplasia progress that quickly to a severe stage (less than a year- maybe 7 months or so)? Is that common?

Thanks for any advice/support you can give. This news has been hard on me.

Last edited by Jules211; 02-25-2009 at 12:12 PM.

 
Old 02-25-2009, 01:56 PM   #2
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Re: Severe dysplasia / CIN III without HPV?

Quote:
Originally Posted by Jules211 View Post
1. I tested negative 3 times for HPV (once back when I was 24, once in November and again this year when they did the paps that came back abnormal)... how could I have severe dysplasia without HPV?

2. I had a normal pap earlier last year (can't recall the date), then had a problem come up in the fall I believe and they did a pap then as well, and that's when the abnormal results came back. How can dysplasia progress that quickly to a severe stage (less than a year- maybe 7 months or so)? Is that common?
Jules, sorry to hear you are going through this. It is a very common story though among the women of this group. I'll do my best to try and answer your questions.

1) While most cases of dysplasia have a direct link to the presence of HPV, HPV does not necessarily have to be evident to have dysplasia. Dysplasia is a term used to define a cell abnormality. The other thing to keep in mind is that an HPV infection has to be active for it to show up on an hpv test. While not likely (but always possible) you could have had it, your body fought it off, but the results were left behind for the pap to show.

2) I think the question all of us have asked at one point or another "how did it happen so fast" or "why not sooner"? My personal story goes like this. ASCUS on pap in Jan. CIS on colpo/bio in Jan. AIS found in LEEP earlier this month. This was after 10+ yrs of clean paps.
Technically it "could" develop quickly - but it is HIGHLY unlikely. It is MORE likely that new technology helped out. Technology is growing in this area and there is a lot of research out there regarding how new pap tests are finding more abnormalities than previous tests.

Try not to be to hard on yourself with "what ifs" and looking up worst case scenarios. I scared myself witless reading all the stories and was an absolute wreck for the first weeks or so after my initial CIS diagnosis. If nothing else I've learned that it is NOT worth it. Whatever will be will be and I'll get through this just like everyone else has in my own way.

Am I afraid of what the Dr. will recommend when I go back in March - you betcha. But the negative emotions tied to that fear do more damage than good. The stress we put ourselves under just isn't worth it.

*HUGS* You will be fine.

Last edited by luvbug412; 02-25-2009 at 01:58 PM.

 
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Old 02-25-2009, 01:59 PM   #3
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Re: Severe dysplasia / CIN III without HPV?

First of all I want to say THAT SUCKS and I CAN TOTALLY FEEL YOUR PAIN.

Well, I'm not sure if I can answer your questions completely, but I'll give you my thoughts.

1. With regard to HPV, the test usually only tests for the 4 "high risk" types. So it's quite possible you have a low risk type that is affecting you in an unusual way.

2. This does seem fast. From my own personal experience, I went from normal to adenocarcinoma in situ in about a year. I have no idea the average rate of progression to CIN 3 and whether your case is common. But, from my understanding, the progression from CIN 3 to cancer takes usually about 10 years. So while it may seem scary, the chances you have cancer are down right near impossible.

I had a LEEP . . . I was surprised at how it was absolutely not a big deal.

The LEEP "cures" the dysplasia, I'm blanking on the percentages, but it's very high. Like 90%. And for those were the dysplasia comes back, women will have a 2nd LEEP and that's it. It is very RARE for this to be a recurring problem.

Good luck and you do NOT have cancer so stop worrying!!!

Last edited by LilyL21; 02-25-2009 at 02:00 PM.

 
Old 02-25-2009, 05:23 PM   #4
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Re: Severe dysplasia / CIN III without HPV?

Hi Jules, while none of us can definitively say someone does or does not have cancer, we can help you understand some of what might be going on.

First of all, like luvbug said, it is possible for the dysplasia to be from something else. It is also possible that you had an HPV infection this whole time, but it was a "low viral load" (meaning the test didn't pick up on the infection - but it was still there).

You asked how you could have severe dysplasia without HPV. Besides what I said in ^ that paragraph, I've read of other women who have various levels of dysplasia and have never had a positive HPV test. How does that happen? I have no idea.

It usually takes years (5- 10 is what I've read) for HPV to progress to cancer. That doesn't mean from the time our first biopsy/test identifies it, it is from the time of infection (as far as how I understand the data). It is possible that many of us were exposed to HPV as long ago as our first sexual experience (not necessarily including sexual intercourse - there are various forms of sexual play that can transmit HPV).

It is possible for atypical cells to grow very rapidly. It isn't likely, but it is possible.

And just throwing in a bit of my experience, it is possible to go from good paps every year for 26 years to having cervical cancer. Even with the cancer diagnosis I NEVER had a bad pap. My colpo was good. The ECC, on the other hand came back AIS. That lead to a cone which came back AdCA Ia1. Talk about being caught off-guard! I never, in my life, suspected a cervical cancer diagnosis. My doctor is still floored that I had cervical cancer. She said she still looks at my file and just shakes her head in almost-disbelief.

BUT, the good news is that if your doctors have caught this early, and you stay on top of the treatment plan (and follow up visits - for life) then it is very unlikely that you will ever get the dreaded cancer diagnosis. Again, none of us have a crystal ball, but based on the statistics - cervical cancer that is caught early (even in precancerous stages) is easily treatable.

 
Old 02-25-2009, 06:02 PM   #5
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Re: Severe dysplasia / CIN III without HPV?

I don't have much of a response yet or more questions, other than to say I am digesting this info and really, greatly appreciate it. It's more valuable than anything I've found online or heard from my doctor so far. THANK YOU! I will be back soon I'm sure with more questions.

 
Old 02-25-2009, 06:27 PM   #6
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Re: Severe dysplasia / CIN III without HPV?

Jules, take your time. This is some pretty heady stuff to try to digest. None of us learned what we know over night.

When I was researching, I started a list of questions. I'd add to it as I learned more. I was actually pretty proud of myself when I was able to delete questions (because I'd figured out the answer).

Take care and write back when you can!

 
Old 02-26-2009, 04:42 PM   #7
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Re: Severe dysplasia / CIN III without HPV?

There's another reason for the negative hpv test besides the situations others posited which are all possible. This is counter-intuitive, but the further along the dysplasia (or invasive cancer), the less virus hpv produces. That's because the high risk types, which you can assume are responsible for any problem beyond CIN 1, integrates its own dna into that of the host cell. Once it successfully does so (IF it is successful, rather), less virus is needed. If that sounds bad, that's because it is: high risk hpv can be a very nasty thing. Had I known earlier that even a 6-month delay in clearance further increased my risk for cervical cancer, I would have sought treatment sooner and not submitted to the watch and wait dance for 2 years while the hpv was doing god knows what--although this is a very personal choice and some women DO take up to 2 years to naturally clear the virus. You can assume you have hpv, because if you didn't, you wouldn't have severe dysplasia. (This is, assuming, that your paps and colpo/bx's were read correctly.) You can further assume it is high risk, though whether it is among the 13 or so high risk types that the Digene HC II detects is debatable (new strains of hpv are still being discovered). Still, it is not that important right now, because you still must have the dysplasia removed. Now, if you truly did NOT have hpv but do have severe dysplasia, you'd have another type of dysplasia or cancer, small cell, and you'd know it because it is exceedingly rare and would be so noted on your pap or colpo/bx's. In this case your doctor would be pretty remiss not to have referred your case elsewhere, unless s/he is a gyn-onc.

I am very sorry this is affecting you so badly. The mental strain is very trying, isn't it? I have delayed my post-laser pap for a month now, and am finally dragging myself back into the gyn's office next week. The good news is you presumably have access to good health care living where you do. Good luck with your procedure.

Last edited by BE 123; 02-26-2009 at 04:53 PM.

 
Old 02-26-2009, 06:24 PM   #8
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Re: Severe dysplasia / CIN III without HPV?

Quote:
Originally Posted by brieaukirsch View Post
There's another reason for the negative hpv test besides the situations others posited which are all possible. This is counter-intuitive, but the further along the dysplasia (or invasive cancer), the less virus hpv produces. That's because the high risk types, which you can assume are responsible for any problem beyond CIN 1, integrates its own dna into that of the host cell. Once it successfully does so (IF it is successful, rather), less virus is needed. If that sounds bad, that's because it is: high risk hpv can be a very nasty thing. Had I known earlier that even a 6-month delay in clearance further increased my risk for cervical cancer, I would have sought treatment sooner and not submitted to the watch and wait dance for 2 years while the hpv was doing god knows what--although this is a very personal choice and some women DO take up to 2 years to naturally clear the virus. You can assume you have hpv, because if you didn't, you wouldn't have severe dysplasia. (This is, assuming, that your paps and colpo/bx's were read correctly.) You can further assume it is high risk, though whether it is among the 13 or so high risk types that the Digene HC II detects is debatable (new strains of hpv are still being discovered). Still, it is not that important right now, because you still must have the dysplasia removed. Now, if you truly did NOT have hpv but do have severe dysplasia, you'd have another type of dysplasia or cancer, small cell, and you'd know it because it is exceedingly rare and would be so noted on your pap or colpo/bx's. In this case your doctor would be pretty remiss not to have referred your case elsewhere, unless s/he is a gyn-onc.

I am very sorry this is affecting you so badly. The mental strain is very trying, isn't it? I have delayed my post-laser pap for a month now, and am finally dragging myself back into the gyn's office next week. The good news is you presumably have access to good health care living where you do. Good luck with your procedure.
Ok now I have more questions... I was tested 4 years ago (roughly) because I was nearing the age limit where the vaccine is no longer effective, and that came back negative at that time. Do you still think HPV has been lurking in my system somehow with this many years of regular paps and three negative HPV tests? Or is it more likely I got exposed recently? It is mind boggling to me... and I know, the end result is the same but I still would like to know the cause... you know how it is, just trying to understand. Do you think I should ask for my records and possibly go to an oncologist since this all seems out of the ordinary?

 
Old 02-26-2009, 06:30 PM   #9
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Re: Severe dysplasia / CIN III without HPV?

Hi there!.....


Sometimes HPV hides itself very well in tests if your immune system is working top notch.....And sometimes tests miss stuff. Look @ many of us here perfectly normal paps/no active HPV then **Bang** HPV city...I have no idea how it is honestly missed.

In any event just be glad it has been diagnosed before true damage has been done!

Jess~

 
Old 02-26-2009, 06:48 PM   #10
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Re: Severe dysplasia / CIN III without HPV?

Ya - HPV is a nasty booger. The hardest part I had dealing with it was not knowing where I really got the infection from. In knowing that its possible to get it even with protected sex (because all it takes is contact) I almost wanted to start wearing a hazmat suit to bed.

 
Old 02-27-2009, 10:23 AM   #11
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Re: Severe dysplasia / CIN III without HPV?

thank you for your post...I am about to have my third leep (29 y/o), and have been told that I no longer have the HPV virus. I used to have it, and my Gyn does not know why I keep getting high grade results, so he referred me to an oncologist last December, who gave my slides to a pathologist at Emory in Atlanta. The result is that I do, in fact, have high grade lesions that need to be leep'ed, again. My concern is my cervix. I am blessed with 2 wonderful children, and do not want any more for a few years, but my husband and I definitely want more. They said if I got wanted to get pregnant later, that they could put a stitch in the cervix, and that they do that a lot for different reasons, so it's no big deal. My main issue is that I might have to have a hysterectomy sometime in my 30's to stop this from spreading, and that thought NEVER entered my mind untill recently. I can handle it, but it is a bit sad, I guess. I am a bit concerned about this situation, but I am going to stay positive and remember that I am fortunate to have great access to health care and a good insurance plan...

Thank you for your post, Pickle Eyes, it really calmed me and gave me some peace. I wish you all health and happiness.

 
Old 02-28-2009, 09:46 AM   #12
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Re: Severe dysplasia / CIN III without HPV?

How can you have severe dysplasia without HPV? Answer is, you can't. Actually the it is not that the vaccine is no longer effective after age 26 but rather that this is the age group for which the vaccine has been approved by the FDA. Merck has actually already applied to the FDA to increase the high end age from 26 to 45.

There is only one FDA approved HPV test associated with the PAP and that tests for far more than 3 types. However, there is also another type of test which has been around for decades which is ISH (in situ hybridization) and can determine any of the types of HPV you may have.

Since HPV can affect other areas besides the cervix a negative PAP does not mean you don't have HPV as it could be in cells located in other parts of the genital or anal area. Typically you would not know this unless you developed a lesion there which was then biopsied.

The fact that you have had 3 HPV tests come back negative is confusing to me. Do you have copies of these results? If not I suggest you request them from your doc.

HPV can remain dormant for decades and the first place it shows up is not necessarily the cervix. I had severe recurrent vulvar lesions for over a year before my cervix was affected and then it went straight from being normal to being a CIN3 requring laser ablation. Have had no issues with the cervix since 1988 but have had and continue to deal with actual invasive cancer of the anus, now extending into the rectum. Vulvar lesions have been gone since 1991 when they did a vulvectomy and removed the majority of the skin harboring the virus. Unfortunately, this was after five years of constantly recurring lesions despite laser ablation, cryotherapy, LEEP, and therapeutic biopsies. Finally the vulvectomy was done and lesions have stopped recurring. Many times the initial symptoms are so minor that they are over looked and then it can go dormant.

I do not understand your statement about having to have a hysterectomy. HPV does not typically affect the uterus and the only reason a hys would be recommended is if you had adenocarcinoma of the cervix but even then, a trachelectomy could be done to preserve the uterus. While the trachelectomy can result in miscarriage and preterm delivery because the cervix is compromised by the trachelectomy, they do a cerclage (the stitch in the cervix you talked about) and having another child is not out of the question. Having had several doctors recommend very rash procedures for me, I'd suggest getting a second opinion on that one.

 
Old 02-28-2009, 09:58 AM   #13
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Re: Severe dysplasia / CIN III without HPV?

Dragonfly you should apply @ the women's clinic as a peer counselor! That is the explanation I would to have loved to hear from my family doctor. Here in Canada they do hire on people part time for peer counsellors (you take a free 2 day course beforehand) and help others with questions like these here.

After my surgery I'm going to volunteer some of my weekend time @ the Canadian Cancer society .

Jess~

 
Old 03-01-2009, 10:56 AM   #14
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Re: Severe dysplasia / CIN III without HPV?

I don't have any copies of my medical records... I think I will call and request them on Monday. If I had my biopsy 2 weeks ago, do you think it's normal for them to schedule the LEEP 10 days from now? If this is so serious, why wouldn't they be doing the procedure asap? I'm getting nervous about all of this again- I want it to be no big deal but I fear that it is.

I've read online that it is possible to have dysplasia without HPV (although very rare), so I am so confused. I wish my doctor would give me more answers!

 
Old 03-01-2009, 11:44 AM   #15
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Re: Severe dysplasia / CIN III without HPV?

Quote:
Originally Posted by Jules211 View Post
I don't have any copies of my medical records... I think I will call and request them on Monday. If I had my biopsy 2 weeks ago, do you think it's normal for them to schedule the LEEP 10 days from now? If this is so serious, why wouldn't they be doing the procedure asap? I'm getting nervous about all of this again- I want it to be no big deal but I fear that it is.
Not unheard of Jules. My colpo was on Jan 23rd, got results 2 weeks later on Feb 6th. My LEEP was scheduled originally for Feb 23rd (based not on my Drs availability but on out patient at the local hospital), but they then moved it back to Feb 16th when they had a spot open up (my gyn - not the hospital). It was originally scheduled for 3pm on that Monday, but then the hospital called and asked if I could come in at 11 since they had another out patient cancel. I then got a phone call at 10:30 that morning asking if I could come in like .. "now" since my Dr. had an out patient cancel. What a fiasco!!!! So much for getting an extra 5 hrs to freak out! :P


My gyn only does surgery on Mon and Fri so I was at the offices whim and how full their schedule was both for him and at the out patient facilities.

You will get nervous! What I ended up doing was holding it all in and was a complete wreck by Monday morning. Showed up and within an 1 hr I was back home. After my Dr said he had finished I sat up and started shaking, badly. He was wondering if I was okay but I realized it was my adreniline reaction to "What the heck? That was all? OMG that couldn't have been it? That was really it? Don't I feel stupid!".

You'll be fine! If you want details of the LEEP let me know, I can send them your way.

Last edited by luvbug412; 03-01-2009 at 11:49 AM.

 
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