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Old 01-21-2009, 11:14 AM   #1
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very mild HPV but severe dysplasia???

Does it makes sense to be told that i have a very mild case of hpv, but have severe dysplasia...highest level of pre-cancerous? This all happened very quickly in my opinion. I have been religious with yearly exams and this HPV and severe dysplasia all happened exactly one year from last pap which was normal.

I had my leep on friday and am anxiously awaiting pathology reports. Can't explain why, but I just feel like it is going to come back with some cancerous cells. What do they do if it does come back with cancerous cells?

Also, still wondering if anyone experienced burning, itching & swelling of vagina lips after LEEP procedure. Very uncomfortable!

 
Old 01-21-2009, 03:38 PM   #2
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Re: very mild HPV but severe dysplasia???

I'm a bit confused because while you mentioned your PAP's you did not specifically say you had the LEEP of the cervix and were asking about itching etc of the vaginal lips (labia) after the LEEP. Since HPV lesions can appear in the vagina, on the labia and vulva I'm not clear on where the LEEP was done. If the cervix, then perhaps it may just be irritation from the instrumentation. Or, you may be having an outbreak of HPV externally which can cause severe itching, the kind you want to scratch raw. Perhaps you should request that our dr perform a colposcopy (external) just to be sure there is no active HPV on the vulva or vagina/labia. HPV is certainly not confined to the cervix although many women think it is in part I believe to the Guardasil commercial which promotes prevention of cervical cancer through HPV vaccination. HPV can be far more aggressive and involve many more areas including peroneum and anus. And, to answer your first question it seems contradictory to say you have a mild case of HPV when the pathology comes back CIN3.

 
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Old 01-21-2009, 04:57 PM   #3
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Re: very mild HPV but severe dysplasia???

Dragonfly,
Thank you for your response. You are correct, my post is a bit confusing. Sorry about that. It was a LEEP for the cervix. The colposcopy was only performed on the cervix. The irritation seems to be getting better so it leads to believe it may just be from procedure/instruments, but I am glad to know about the option to have colposcopy performed externally. I will certainly address that at my post-op appt.

 
Old 01-21-2009, 06:16 PM   #4
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Re: very mild HPV but severe dysplasia???

I wonder if your burning, itching,and swelling are from something the doctor used when he/she did the LEEP (cleansing agent, the Monsel's solution, etc) and you are allergic to it. You might try taking some benadryl (OTC) to see if it helps. If it continues or if it gets worse, then you need to call your doctor's office to ask about it. Your doctor may need to see you again.

I don't understand what "mild case of HPV" is. There are two types of HPV that affect the genitals: high risk and low risk. Low risk HPV cause genital warts. High risk HPV is what can lead to dysplasia or cancer (of various genitals: vagina, vulva, cervix, anus, rectum, penis, mouth/throat).

Do you know what type of dysplasia you have: squamous or glandular/columnar?

Severe dysplasia is caused by high risk HPV. It is sometimes called CIN III (or it might be carcinoma in situ or adenocarcinoma in situ). The in situ's are sometimes referred to as the highest stage or precancer, other times they are referred to as stage 0 cancer. To speak accurately, it is a precancerous state. Cancer means there is invasion. Insitu means "in place" so it isn't invasive.

Some things in your post really struck familiar ground for me. I have had regular paps since I was 19, I am not 45. My paps have always been good. Last year I was diagnosed with adenocarcinoma in situ. What a shock! My doctor said that most women who are diagnosed with adenocarcinoma (glandular cell) have histories of good paps. This is because of the nature of what type of cells the dysplasia grow in.

The other thing that struck me about your post is that I had a "feeling" too. I went from good paps for 26 years to positive for high risk HPV, to a clear colposcopy but an ECC that showed adenocarcinoma in situ, to a cold knife cone biopsy that showed adenocaricnoma Ia1, to my gynecological oncologist's office. That happened within 3.5 months. As I learned more about HPV, and cervical dysplasia, and the two types of cervical cancers, the stagings, and the treatments I had a sense that I had cancer. I knew it before I went in for my cone biopsy. My heart skipped a beat when I talked to my doctor on the phone with the diagnosis, but I didn't stop, wail, or scream. It was exactly what I suspected! As I read, I knew it was going to be stage I.

To answer your question what they do after the LEEP, if they don't feel the LEEP got all of the cells they may want to do a cold knife cone biopsy. If your LEEP comes back CIN III or insitu, I highly recommend you get an appointment with a gynecological oncologist. They deal with cancer every day. An OB/gyn might be very good at fertility, prenancy, and delivery, but he/she doesn't deal with cancer every day. I wanted an expert looking at my slides and doing my hysterectomy (which was the last "treatment" I needed - my cancer was caught so early that I didn't need chemo or radiation).

This is difficult to deal with, but it helps to at least have a textbook understanding of what is going on. Write back when you can.

When do you expect to hear back? Personally, I'd call tomorrow or Friday just to see if they have the results. But then I like calling them before they call me!

 
Old 01-21-2009, 07:24 PM   #5
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Re: very mild HPV but severe dysplasia???

Pickle,
Thank you so much for your post. It comforts me to know I am not crazy with this internal "feeling" (may be intuition or the body/mind preparing itself or I could just be paranoid and scared.) Either way, it is nice to know someone else has felt this way.

I will try the Benadryl tonight. Don't know why I didn't think of that one?!

I agree that it doesn't make sense to have mild HPV and severe dysplasia (CIN 3.) This was not told to me directly by my doctor, but by a staff person from his office who called with the colposcopy results. At that time, I was absolutely floored to learn I had CIN 3 b/c my doctor had said he didn't feel like it would be a severe case, he thought it would be a 1 or 2 at worst. Obviously since I have severe dysplasia it is high risk HPV. I should just dismiss that part of the conversation since it wasn't directly from him.

I'm not sure what type of dysplasia I have squamous or glandular/columnar. I will have to look through my original notes I took and see if I was told, because I definately didn't know to ask until your post just now. Either way, I'll find out at my post-op or when they call with pathology report, whichever comes first so I can do more research.

They said it would be 2 weeks before I heard from pathology report. This Friday is only one week since surgery date.

I thought I had done my homework and been pretty thorough with research, questions/concerns, etc prior to LEEP procedure, but since coming on this board today I realize I missed a lot of important pieces and will be better prepared for the next step.

My question for you is why hysterectomy over radiation/chemo? If this is too personal of a question, I apologize and please ignore. I only ask b/c I'm 29 married and want to have children in the next few years so obviously the idea of hysterectomy is not an option in my mind at this point. Just curious from your research you did to come to this decision.
Thanks!

 
Old 01-21-2009, 09:29 PM   #6
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Re: very mild HPV but severe dysplasia???

I suggest you call tomorrow or Friday anyway. The worst they can say is the results aren't in - or they can't tell you over the phone. In that case, go by the office to pick up the results. You do not have to wait until the doctor's appointment to get the results.

Well, since new questions keep coming up, write out a list of questions to take the next time you call or go in. Those lists helped me keep my sanity during my diagnosis.

You might look into a trachelectomy if you want to preserve fertility. It is surgical removal of only the cervix. It leaves the uterus. There are still changes of pregnancy and carrying a baby to term, though the baby would be born by C section.

I didn't have radiation or chemo because my cancer was caught so early they weren't needed. My invasion was only 1mm deep (a dime is 1 mm thick). Each of the two lesions were only 1 and 1.2mm across we're talking the size of bread crumbs after eating a sandwich!

The National Cancer Institute has some really good information on stages of cancer and treatment plans for each stage. My stage was Ia1 (adenocarcinoma).

When I went to my first gyn/onc appointment she told me of my various treatment options. Basically it was a radical hyst (cervix, uterus, ovaries, tubes, the fatty tissue that surrounds those organs (can't remember its name) and maybe some lymph nodes) or a total hyst (cervix and uterus only). I had several options as to how I would get to surgery, but it would have to happen within several months of diagnosis. She said my cancer was too small to need chemo or radiation.

Well, it is getting late and I've been interrupted several times while writing this. Take care and write back!

 
Old 01-24-2010, 06:05 AM   #7
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Re: very mild HPV but severe dysplasia???

Hi- I'm new to this post. Wanted to share my story here...I am 50 yrs old. had 5 years of nasty lazar surgery when I was 29 for high risk vulva and cervical dysplasia. 9Even had one spot on vulva that was already carcinoma insitu) finally got rid of all warts, bad skin,- and paps came back normal too. Now- 22 years later, I booked surgery with cancer dr. to have multiple biopsies done just to recheck. Dr. looked at all skin in office and said I was nuts, skin looked perfect. but I insisted and we had the surgery- all exterior biopsies came back medium dysplasia. (Cervical skin was fine) So there you go! Skin didn't even look weird, but it was. he wants me to use Aldera Cream, but I am trying something holistic first named Beta Mannin. hundreds of people online swear they got a normal biopsy result after using this for a few months. Its not cheap, although it is 1/3 the cost of Aldera. Although initial dysplasia is caused from HPV infection, Bottom line is dysplasia is a systemic condition that is a result of a very poor immune system. Smoking is the number one problem if you are testing positive for dysplasia. You absolutely cannot smoke, if you ever want to get rid of this. When I finally got rid of it 20 years ago, it was because I finally quit smoking. I starting smoking again 10 years ago, and it came back. now I have stopped again. and am taking the beta mannin. Also- diet! I know it is a boring thing to keep posting about, but green leafy cancer fighting vegetables MUST be in your diet every day. Especially at the start if you are trying to reverse dysplasia. All of these things will strengthen your immune system and ward off the dysplasia. The good news is that this type of condition is (usually) slow growing, which allows you some time to get your act together. I will schedule biopsy surgery again in a few months to see how I am doing. And one last thing- Doctors always want to do these very painful biopsies in their office as an out patient. I refuse to do that. having been through so much pain so many time with this, I INSIST on surgical appointment, with lots of pain meds. I don't give a damn how much they refuse or try to make me feel like a woos...If they won't do it I get another doctgor. it makes all the difference girls...takes 90% of the anxiety out of the experience. and it allows the doctors to get better biopsies.

 
Old 04-01-2010, 07:36 AM   #8
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Re: very mild HPV but severe dysplasia???

Follow up to my above posting. Beta Mannan did absolutely nothing. did not work. IN fact, I think I"m a bit worse than when I started it. and I did it for 2 rounds just to be sure. I've emailed them twice, to see about a refund, because they assure you, you can get a refund if your "not satisfied", and they are not acknowledging my emails at all. So I guess its a scam. I know there are some poeple on the net that say it worked for them, and I do believe them, but it sure did not work for me. and it was not cheap either.
So now I"m starting the Aldara...nightmere anyone? Burning, swelling, pain? muscle aches, chills, sick to my stomach?
Should I wait a week and then try it again?

 
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