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Old 04-24-2009, 08:01 PM   #1
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Terrified of my high risk HPV and ascus result

I'm really terrified of this result. I had a nurse talk to me in person about it and she said that if had just been an ascus result and no hpv that she wouldn't worry about it, but since I tested for high risk hpv that she wants to schedule a colposcopy. Aside from worrying about the pain of a biopsy and endocervical cutterage, (read horror stories) I'm deathly afraid of the outcome.

She said (and I quote) that an ascus result is actually a good thing. She said that it is 1 step away from 'normal' results and that even though the pap smear is just a screening tool, if there were cancer cells that they would have probably been able to spot them. She also said that she has never seen an ascus result from a pap smear come back as worse than low-grade--that it is rare for an atypical result to actually be cancer (because the cells look almost normal) She ALSO said that when she did my pap, I didn't bleed and that my cervix looked healthy (and that she has seen ones that she could tell weren't good)

Can someone ease my mind and/or be honest with me? Is she just trying to make me less scared?

Before this, (and I'm 26 years old) I had NEVER had a pap, been sexually active for 6 years---what if I have cancer??!! What if it has been brewing this whole time since I became sexually active???? I mean, I have seen posts all over the place that said different things. One lady scared the crap out of me by saying that HER doctor told her that high risk HPV with ascus result means 80% cancer chance!!!!!!!

My mom said it is rare for someone my age to have cervical cancer and that it takes about 10 years to become cancer in hpv patients...but my defense is that Jade Goody died at age 27 from cervical cancer.

Help me please..I'm making myself sick with worry. I am so scared about what the biopsy will say. Can a pap really tell if there is cancer? If so, why the colposcopy? I understand it is to monitor...and I'm going to go get it done in about 2 weeks....but OMG what if it IS cancer?

 
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Old 04-24-2009, 08:18 PM   #2
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Re: Terrified of my high risk HPV and ascus result

Neochiq, I understand your fears and worries, but I think at this point your doctor just needs more information. The best way to do that is with the colpo. The doctor will probably take a biopsy of the exocervix. The doctor might, if he/she has reason to, do an ECC.

There are several steps between your pap results and cancer, for most women. There are rare cases. My suggestion, as a woman who was diagnosed with cervical cancer last year . . . is take it one step at a time. Worrying only gives your mind something to do - and it isn't productive.

My suggestions are to read reputable sites (CDC, etc), learn the basics of what will happen. Try to avoid horror stories. Write down your questions and leave room for writing answers.

 
Old 04-25-2009, 10:45 AM   #3
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Re: Terrified of my high risk HPV and ascus result

I guess the reason that I am so scared and worrying myself sick is because I hadn't ever had a pap until now. I am so afraid that it has progressed to cancer in these few years...

Ever since I've found out I've realized that for the past few months I've been very tired and have chronic back pain---but I'm also top heavy and overweight. I have a large chest but I don't know if this would cause backpain or not.

With my ascus result and high risk hpv---is there a chance I have cancer? Or is it most likely that I do not have cancer?

 
Old 04-25-2009, 11:01 AM   #4
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Re: Terrified of my high risk HPV and ascus result

Neochiq, I am not nearly as knowledgeable as the ladies on this board but I know that they can offer some feedback based on your colposcopy and biopsy results report. When you get that stuff, I'd suggest posting the results on here and I'm sure they'll give their two cents.

With that being said, I have two points and please know that this is just my opinion and again I am not an expert by any means: with your results, yes I suppose there is a VERY small chance that there are cancerous cells but I think that this would be VERY unlikely. If it was that severe, from what I've read and heard, you would see that on a pap. Your next procedure will really be the tool to gauge what is going on and what your treatment will be. If any of the other ladies disagree, I'm sure they'll post it here.

My second point is this: I don't know your situation and I don't know what the last few years of your life have been like. I know what it is like to let life get busy and to not take care of certain things, but you really need to have your annual exams. This is critical to your health - it will find these things in most cases before it gets to a dangerous point. If insurance is unavailable, there are programs available to help. Planned Parenthood offers a sliding scale based on income so that your yearly exams are not overlooked.

Please understand that I'm not trying to make assumptions about your situation or be nagging. I just really believe in taking care of yourself and know that sexual activity introduces a whole host of issues that require close supervision to make sure that everything is okay. HPV can stay quiet or it can speak up - a pap will catch that, as you've now seen.

I really hope that everything is okay and please post how you're doing!

Jen

 
Old 04-25-2009, 12:19 PM   #5
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Re: Terrified of my high risk HPV and ascus result

Being overweight and/or "top heavy" are often causes of various forms of back pain. Back pain can be caused by so many things.

I agree with Jennifer, the colpo will give you and your doctor a better idea of what is going on.

 
Old 04-25-2009, 02:32 PM   #6
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Re: Terrified of my high risk HPV and ascus result

I appreciate everyone trying to help. Pickle eyes, you seem to have the most experience with this--and I know you're not a doctor but with what you know and have heard etc, do you agree with jennifer that it is probably not cancer?

I am going to get the colposcopy, I'm not searching for a reason not to get one...I KNOW I need one so that they can better understand what is going on...and I would say the majority of people are telling me that it is probably fine...but like I said, I've read other things that said high risk hpv + ascus is usually 80% cancer--and of course this is the one stuck in my head

Are you guys annoyed with me yet? haha.

I know nobody can say 'no Jennie (my name) it is NOT cancer' I guess what I'm searching for is an honest opinion from experiences

 
Old 04-25-2009, 03:39 PM   #7
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Re: Terrified of my high risk HPV and ascus result

My honest opinion is that no one knows until the colpo and biopsy reports are back. I can't (and won't) make predictions, if for no other reason than I was on the wrong end of a prediction!

From what I've read, I would say that statistics and percentages are on the side of the ascus being the beginning stages of atypical cells. Caught early, atypical cells of the cervix are very easily treated. Sometimes they are left to let the body heal itself (especially if the woman is younger than 30). If the body doesn't heal itself, then the colposcopy and biopsy often remove all atypical cells. If that doesn't take care of it, then sometimes a cone type biopsy (LEEP or CKC) is done. Often, that removes all atypical cells. If not, then further investigation is done.

Most cervical cancer (80%) is squamous cell. Squamous cell carcinoma is very easily (because of biology) found (by the pap or colpo) and it is usually very easily treated (by biopsy or cone). IF found early and treated/biopsied.

It is possible that the ascus is from an infection of some sort. That is why the ascus = undetermined significance.

I am really glad you are going for the colpo and biopsy.

I will repeat that worrying only occupies the mind and it doesn't ease the mind. It only causes the mind to spin into a powerful vortex. I strongly suggest that you learn what you can from reliable resources, share your thougths and feelings. We'll be more than happy to be here to support you. I also encourage you to do some things that will happily occupy your mind until you get the colpo+biopsy.

I'm sorry I can't be of any more help than that.

Have you made your appointment yet?

 
Old 04-25-2009, 09:08 PM   #8
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Re: Terrified of my high risk HPV and ascus result

Jennie,

I thought of your worry a lot today. I am a worrier myself and my mind gets the best of me and I just hope you're doing ok!

Jen

 
Old 04-26-2009, 02:00 AM   #9
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Re: Terrified of my high risk HPV and ascus result

thanks Jen---I'm a huge worrier--and now I am convincing myself that I'm exhausted and in pain and can feel pain in my pelvis. sigh. thanks for the thoughts!!!

 
Old 04-26-2009, 12:59 PM   #10
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Re: Terrified of my high risk HPV and ascus result

neochiq,

First off, wherever you read that an hpv+ and ascus pap has an 80% chance of being cancer is just plain wrong.

I first had an hpv+ and ascus pap about two years ago (wow! time flies!). I also had missed my paps for over five years at that point (I'm 32 now) so I know EXACTLY where you are coming from right now. I was terrified that I had already developed cancer since it had been so long since I had a pap.

In my countless hours of internet search on this topic, I have been able to pull some statistics together that put my mind somewhat at ease through all of this:

[deleted]

I guess what I found comforting about this was to look at how many thousands of women each year are treated for high-grade cervical cell changes versus how many are actually diagnosed with invasive cancer - it's a pretty low percent. So, even if your colpo diagnoses CIN II or III, the chances that it can be treated prior to actual cancer developing is really quite good!

Now, as for me, like I had mentioned, two years ago I had the HPV+ and ASCUS pap. Since I was going to my normal general practisioner and not an actual gyno, I don't think she was totally up to speed on the appropriate follow up care for such a result because normally a doctor would recommend a colpo (like yours has), but she kept giving me paps every four months for almost a year before she recommended I see an actual gyno for a colpo. I did that last May and the results came back as CIN I and the gyno prescribed the "wait and see approach" as CIN I has a good chance (as noted above) of regressing without treatment.

Well, my next pap in November of this year once again came back HPV+ and ASC-H, which is basically an ASCUS pap but with a suspicion of high-grade changes. I had the colpo done once again, this time the biopsy came back as CIN III. So, I had a LEEP done earlier this month where the doctor removed FOUR areas of CIN III but found, thank god, no actual cancer.

So, I guess my lessons that I took away from this are:

1. I will never, ever miss another pap in my life.

2. Educate yourself on this topic as much as possible. There is a lot of misinformation out there and unfortunately even doctors don't seem to be entirely up to speed on this issue, but if you stick with reputable sites, such as the American Journal of Obstetrics & Gynecology, you will get some really good info.

3. You have to be your own advocate. I scheduled multiple consultations with my doctor JUST to ask questions. If you don't understand something, ask. Don't worry about being a pest. It is your body and your right to know as much as possible about what is going on and why certain recommendations are being made. No one else is going to do this for you.

4. If you are not comfortable with your current doctor, find a new one. Cervical cancer issues are usually very slow moving. This doesn't mean that you can ignore any problems, but does allow for some time to get a doctor you are comfortable with.

I know that the Jane Goody story is scary - she died just prior to my last colpo and I was absolutely terrified that I was going to be in the same boat - but the average statistical age for cervical cancer is the mid 40's and 50's, so if you are catching any precursors now, you are most likely in really good shape!

Last edited by Mod-S4; 04-26-2009 at 11:44 PM. Reason: This board is for your own writing only. Please do not post text from other sources. Thanks.

 
Old 04-26-2009, 02:44 PM   #11
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Re: Terrified of my high risk HPV and ascus result

hey, thanks for sharing your story. It makes me feel a little better to know that never having a pap isn't necessarily a death sentence.

When you tested positive for HPV was it a high risk or low risk strain?

 
Old 04-26-2009, 05:31 PM   #12
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Re: Terrified of my high risk HPV and ascus result

It was high risk. From what I understand, high-risk = abnormal paps/cell changes that could lead to cervical cancer, while low-risk = only warts. Let us know if you have any other questions and please let us know when you get the results from your colpo. If you have any questions about that procedure too, let me know - I've been through two.

 
Old 04-28-2009, 03:52 PM   #13
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Re: Terrified of my high risk HPV and ascus result

I'm in a very similar situation but thought that I would share what I've learned. I got my first colposcopy today, because I had 3 abnormal paps in a row (had one every 6 months due to having HPV). The first 2 were the worst, because they showed abnormalities, but the most recent pap was ASCUS--just like yours. ASCUS IS an improvement and is very common with HPV. I have been told by NUMEROUS doctors that HPV will "cure" itself with a healthy immune system within 2 years if under 30 years of age (by cure, I mean it will lie dormant and no longer pose a risk for cervical cancer).
Anyway, I was TERRIFIED of getting a colposcopy, but decided to as it is recommended after 3 abnormal paps and a dx of HPV for women 21 or older. I won't lie--it wasn't painLESS, but I've been in worse pain. I definitely recommend taking an OTC pain pill before going (the nurse didn't inform me until I actually got there that this was recommended). If they take a biopsy, you will feel a pinch--which is the most uncomfortable part.
I talked to the doctor for a while, and he clarified that if either abstaining from sex or using condoms with ONE partner (exclusively), your body will "cure" HPV within 2 years in ALL cases. He said that if only everyone would use condoms, he would go out of business (kinda made me laugh). But this is true. I started using condoms with my boyfriend about 6 months ago (we've been in a monogamous relationship for almost 2 years), and I really believe that's why my pap test results improved.
I also asked him about having children in the future. I was under the impression that I would have to use condoms forever with my boyfriend. But he said while my immune system fights off HPV, my boyfriend's will too. And as long as we are both exclusive and not sleeping with anyone else, it's safe to have sex without a condom ONCE we are both clear. So there is a light at the end of the tunnel.
My advice is to ALWAYS use condoms--100% of the time. I will until I am absolutely SURE that we are both clear. Good luck to you!!

 
Old 04-28-2009, 08:02 PM   #14
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Re: Terrified of my high risk HPV and ascus result

I'm still convinced that I have cancer. I'm feeling pain and stuff...I don't know if it is in my head or not.

you all must be pretty sick of me..lol.

I feel like my lymph nodes are swollen and stuff...I don't know...I'm convincing myself. I have to call and make my appointment soooooon....sigh.

On a scale of 1-10 (10 being most painful) what are the biopsies and endocervical cutterage rated?

sorry all....this is just my worst fear realized...

The thing that I fear sets me apart is that everyone says it can cure itself within a few years....well...I've been with the same person for almost 4 years...and I have an ASCUS result....maybe it's worse (only biopsy will tell) but anyhow, if it hasn't cleared in 4 years...AND I've never had a pap...I'm still totally terrified :-(

sorry to all that have to go through my hypochondria with me

 
Old 04-28-2009, 09:43 PM   #15
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Re: Terrified of my high risk HPV and ascus result

I can really identify with what you're saying. When my colpo in March diagnosed CIN III, I had convinced myself that it was actually cancer and I began having psyco-schematic reactions ranging from pain in my cervix, to lower back pain, to even a change in bowel movements (sorry if this is TMI) that I all thought were in direct relation to already having cancer. Now, four weeks after my LEEP and a confirmation from my doctor of NO cancer, all of those things have disappeared. It really is amazing how acutely your mind can transform these anxieties into actual physical pain, but it defitely can.

I asked the same exact question (rating on a scale of 1-10) on a different forum prior to my first colpo. I guess the best I can tell you is that everyone's experience seems to be different. There are some women who say that they didn't feel a thing! I wish I was so lucky. My first one was nightmarish but I had a very very poor doctor. My second wasn't so bad, but I was on an anti-anxiety medication AND vicodin, which I was lucky that the doctor prescribed for me as I don't think many would do that. She was very understanding of my anxiety level after my experience with my first colpo.

If you are really worried about the pain, talk to your doctor about getting an anit-anxiety med to take beforehand (someone will have to drive you to and from the appointment). The reason I suggest this is because the more you tense up during the whole process, the more uncomfortable it feels. So, if you can relax at all, it will help. In addition to the meds, I focused on deep breathing and listened to my Ipod.

Don't think that you are abnormal since you are just now dealing with this after being with the same person for so long. I had been with my husband for 10 years before my HPV showed up. It can lay dormant in your system for quite a long time.

You can get through this - trust me. I was severely gyno-phobic before all this (hense the 5+ years of missed paps) but now I feel like an old pro!

 
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