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Old 04-30-2008, 03:12 PM   #1
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Please Help Me! - Need Comforting!

In December I had my first pap - ASCUS
HPV negative for high and low risk strains.
Had a colpo - did a "brush" of the area - sent
to pathology - also cam back ASCUS.

Had cryo - in january
asked to come back 4/12 to repeat pap.

Pap results show no change!
ASCUS - HPV negative for high and low risk strains.

I am 52 -still gettting periods.

Have been asked to come back in 3 months to repeat the
pap again.

Is this the right way to go? Can anyone relate.

I have been crying all afternoon.

Even if you don't have any advice, if anybody could just say something soothing, I really need to hear from you.

I am so frightened.

PS - it had been almost 3 weeks so I thought everything was OK - I called and was told they could not give results over the phone because they are HIPPA compliant and the doctor was not there. I called the insurance company and they called the office and pursuaded them to call the doctor to get permission to me my results!!!

This is insane! The girl said if anything was wrong that I would have been contacted right away. - Hey isn't this result something wrong???? Am I the one who is crazy here???



Marie

 
Old 04-30-2008, 03:59 PM   #2
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Re: Please Help Me! - Need Comforting!

Hi Cook/Marie! I'm not very familiar with ASCUS except to know they are atypical squamous cells. I learned that when I was learning about my atypical glandular cells. Something like 90% of the women who have abnormal paps have atypical squamous cells (I'm in the 10% or so with atypical glandular cells).

Have you actually seen your pathology reports? If not, ask for copies of them. They will give you more information.

When you went for the colposcopy, did they take any biopsies of the excocervix (outer cervix)? It sounds like the "brush" might be an ECC (endocervical curettage - a scraping of the endocervical canal (I call it the hole in the donut)). When I went for my Colpo, everything looked great. My doctor did the ECC just to check out the cervical canal. That is where my doctor found the atypical glandular cells.

Please ask whatever questions you have (here or of your doctor). Everyone here will do their best to answer them.

I wish you peace, understanding and health!

 
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Old 04-30-2008, 04:08 PM   #3
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Re: Please Help Me! - Need Comforting!

Hi, I'm so sorry that you are so upset.
I can't really offer much advice, but I feel that if you are not happy with the way everything is being handled, it might be a good idea to get another opinion. I'm guessing they have done a biopsy of the area.
The timeline for repeat smears seems right to me. They seem to be keeping a close watch. If they thought it was more severe, they would take more action I'm sure.
It is a very upsetting time, and sometimes very confusing, but it is a time that you need to be taking care of yourself. So do whatever you need to do, to ease your stress. If that is getting another opinion, then please do that.
I hope you find some peace and that you will get some better advice from some of the other ladies on here.
Take care.

 
Old 04-30-2008, 04:35 PM   #4
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Re: Please Help Me! - Need Comforting!

Hello Pickle and Mandy

Thanks for your responses.

All 3 reports simply say ASCUS - nothing more.
Except I have had to hpv tests -both came up negative
for high and low risk strains which i suppose is a good thing
especially if it comes out negative 2x in a row.

Still my anxiety with this is extreme. Unfortunately I have
no family. I was thinking of calling the insurance company
when they open tomorrow to see if I could go somewhere else
and get a 2nd opinion.

I keep hoping this might just go away by itself. I have heard that
often these results do resolve themselves.

A major part of my frustration was being told they could not give me the results over the phone and that I had to wait for the doctor to come back. Apparently she had been out all last week due to a death in the family.
I'm sorry about that but I think it is wrong to keep people anxious for info waitng like that.

In january I waited almost a month because they were closed for 2 weeks for Chirstimas!!

Thanks for letting me talk here ladies.
I dont' know what I would do without you all.

Love,
Marie

 
Old 04-30-2008, 05:28 PM   #5
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Re: Please Help Me! - Need Comforting!

I would think the doctor would have another doctor oncall for situations like this.

Take care, marie!

 
Old 04-30-2008, 05:43 PM   #6
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Re: Please Help Me! - Need Comforting!

Hi Pickle,

I was told she had a backup doctor for emergencies - like if you go to the ER at her hospital there is a backup GYN there.

This is not an emergency. I just called my nurse helpline and they read stuff from their knowledge base. Believe it or not a lot of women presenting with my result are actually told to come back in a year!!!

My doctor actually went so far as to do a colpo/cryo and repeat in 3 months.
According to the nurse helpline this is being conservative. I have other health problems that I wanted to focus on right now so I was really hoping this would just go away and give me a rest.

Pickle - how are you doing anyway. I know about your story. You have been so wonderful at keeping us together here. I want to thank you for being there - alot of this is just having somebody out there to comfort you.

That's makes it all easier to bare.

Best,
Marie

 
Old 04-30-2008, 07:13 PM   #7
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Re: Please Help Me! - Need Comforting!

Hi Cook,

Well it sounds like our situations are similiar. I am 37 and received my first abnormal pap in June 07. It was also ASCUS- HPV negative. I do NOT know my low risk HPV status as I was told they only test for High Risk. So here's my history:

June 07- ASCUS- HPV Negative- Dr. # 1- told to repeat in 3 mos
Sept 07- ASCUS- HPV Negative- Dr. #1-told ASCUS w/ 2 consecutive neg HPV is the equivalent of NORMAL- Return in 1 year.

I was NOT comfortable with this because ASCUS to me was not NORMAL. NORMAL is NORMAL. So I found another DR and went for consultation. She concured that DR. #1 was in fact correct according to guideline BUT that she is a more conservative DR and advised me to return in 6 mos.

March 07- ASCUS-HPV Negative- DR. # 2- told that since I keep getting ASCUS, she'd like to colpo me which she did 1 day after I got my results.

March 07- Colpo w/3 biopsies plus ECC- Results Atypia- told to return in 6 mos.

SO...doesn't this sound familiar to your situation?! See you're not alone :-)

Yes...I still fret. yes I get scared. I look at other women and wonder if they've experienced the same thing just so I can have someone to talk to. Sometimes this board is the only place I have to go because as much as family wants to understand...they really can't. Anyway, I've been better lately because I've really tried to accept that ASCUS is the mildest of abnormalities. Not only that but the ASCUS has been supported by Colpo. And my ASCUS/ neg HPV have been results given by 2 different labs. So I keep trying to believe this will regress and I will get a true NORMAL pap. Lately, I've been trying to take Folic Acid regularly as well as B12. They say this helps in some situations.

1 question for you---why did they do cryo on you...with ASCUS/NEG HPV the cells were only slightly abnormal....there weren't any lesions so I'm just curious. That's interesting.

Please feel free to write anytime. The women here are great. I hope this helps. Take care!!

 
Old 04-30-2008, 07:26 PM   #8
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Re: Please Help Me! - Need Comforting!

Hello Mommyandwifey

Yes!!! your situation sounds exactly like mine!

The only difference is that she did do a cryo.
Why?
well the way she explained it is that while we could
do a "watch and wait" thing, coming back every 6 months,
it was possible it could get worse and then i would need
more aggressive treatment. To tell you the truth, I was
so upset and dazed when she spoke to me that I didn't
know what planet I was on so I just decided to do whatever
she said needed to be done. I agree - I don't see that the
cryo was necessary now - but who knows.

I honestly think that my abnormal pap is due to atypia also.
The reason I think that is because I had what felt like a severe
yeast infection the month before my first abnormal pap.

The symptoms were relieved by using monistat over the counter.

BUT - I still get external itching and I use monistat externally to
keep myself comfortable. The doctor said there was no infection
internally - pap does not show infection - Sooo she said it was
fine to use the cream externally if it made me comfortable.

Sooo....here I am - like I said our stories seem very similar.

And it is so good to be able to share this with someone going thru the same
thing.

so now you come back in 6 months???? Is there no treatment for the atypia???


Thanks for writing,
Marie

 
Old 04-30-2008, 07:48 PM   #9
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Re: Please Help Me! - Need Comforting!

Yep...I go back in September! So I'm going to try to enjoy my summer. Atypia was the results from the colpo which supported the ASCUS pap results. I actually wanted to see my pathology report so I picked it up from the DR and read it. Ofcourse it lead to alot of new questions which I posted here. There were so many medical terms that sounded bad but when I finally calmed down...it essentially said the cells were atypical. I'm so happy I got the path report because there was actually an error on the report from the office which they've since corrected.

In September, I am claiming a "normal" pap. If by chance it is still ASCUS/HPV--it'll be interesting if she proceeds to cryo like your Dr.?? Hmmm...we'll see.

One thought about your situation....you know hormones can cause cell changes on the cervix. Any chance you're entering menopause? That would certainly qualify as hormonal?

Take care.

 
Old 04-30-2008, 08:09 PM   #10
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Re: Please Help Me! - Need Comforting!

Hi Marie,

It is possible for ASC-US results to be caused by other things besides pre-cancerous changes. In fact, ASC-US isn't even considered pre-cancer or dysplasia. It's just that some of the cervical cells look a bit odd.

For example, a bacterial, fungal, or yeast infection can cause abnormal results. Decreasing hormone levels in early menopause can cause vaginal and cervical inflammation which can cause abnormal Paps. Having your period or having sex or douching within 48 hours of the test can cause abnormal results too.

The fact that you are HPV negative is a huge advantage since almost 99% of all cervical cancers are caused by HPV.

I don't think you have anything to worry about, though I do know how frustrating it can be to have to keep being tested.

I had my first abnormal Pap back in 2005. A repeat Pap three months later was also ASC-US. A colpo and biopsy showed moderate and severe dysplasia. Over the next two years, I had various treatments, repeat Paps, and repeat colpos and biopsies, some of which were normal, some which were worse than previously. In February of last year, I was finally diagnosed with carcinoma in situ, cancer which hasn't spread yet. I had laser surgery in May and am still having to go for follow-up Paps for another year. So far though, everything has been normal, and I'm keeping my fingers crossed that everything stays that way.

Good luck to you and big hugs,

Lisa

 
Old 04-30-2008, 08:18 PM   #11
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Re: Please Help Me! - Need Comforting!

Hi ladies, I just wanted to add to your posts, because I don't think anything is ever as straight forward or typical when you get results.
I had CIN 3 in 2004 which I had a LLETZ(Large Loop Excision of the Transformation Zone) done. All smears were clear after that. I then was tested for HPV in Dec 2006 (which came back positive) but smear was clear. I then was tested again in Jan 2008 for HPV (which came back negative). (here in Aus they say that when you have 2 HPV negative results consecutively you can then go back to 2yearly smears.)
But here is the confusing part (If i haven't confused you already) I tested negative, but I now have VIN (same as CIN but occuring on your vulva). What has been explained to me (by one dr) is that because I tested positive in DEC 06, it was what probably caused the cell (VIN) changes on my vulva. I have just had surgery for with additional biopsies, and get those results tomorrow.
I hope you understand what I'm getting at...cause I am finding it a little difficult putting it in words.
Just because you test negative...does it mean that you could of had HPV but you immune had fought it Sometimes it can lay dormant in you system for years.
Sorry to add more questions.

 
Old 04-30-2008, 08:26 PM   #12
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Re: Please Help Me! - Need Comforting!

I've heard what Shashi said, about all of those different things causing atypical results on Paps. I also agree that having a negative HPV test is a very good thing.

Quote:
Originally Posted by cook82 View Post
Pickle - how are you doing anyway. I know about your story. You have been so wonderful at keeping us together here. I want to thank you for being there - alot of this is just having somebody out there to comfort you.

That's makes it all easier to bare.
Thank you for asking, Marie. I'm doing ok. I have good days and bad days; generally there are more good than bad. I am trying to keep myself busy so I don't start worrying about details. My surgery is scheduled and now I need to get life in order before that.

It is definately much easier when we all round up the wagons and attack this together! I'm so thankful for this discussion board and all of you great ladies! (((group hug)))

 
Old 04-30-2008, 08:34 PM   #13
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Re: Please Help Me! - Need Comforting!

Hi Pickle Eyes...wanted to let you know I went to kickboxing class and when the instructor sent me to the punching bag...I kept thinking about you and many of the ladies here. I had to punch the bag for two minutes and kept thinking of the bag as dysplasia and cancer....I tried to knock it off the chain LOL I just kept thinking...WE CAN KNOCK THIS OUT!!!

Good night...take care

 
Old 04-30-2008, 10:03 PM   #14
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Re: Please Help Me! - Need Comforting!

Hey mandy14, I read somewhere that the HPV virus (high risk ) will active for the first two years and in-active after all.

Last edited by magnj; 04-30-2008 at 10:05 PM.

 
Old 05-01-2008, 01:19 AM   #15
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Re: Please Help Me! - Need Comforting!

Hello Shashi

I am in peri menopause - I am 52.

Also I had symptoms of an infection about 6 weeks
before the pap. I had itching, soreness, frequent
urination, etc. I went to my GP for a urnialysis
but that was negative. So I was not surprised when
the pap came back abnormal.

One thing that is bothering me is that the gyno says
there is no infection - paps do not show infection either.
I suffer chronically from external itching. Sometimes I
think it is due to the soap I use in the shower but not
sure. GYNO doesn't care about this. She said just meno
dryness and to use lubricants.

Mandy's post made me think - could something going on in
the vulva cause this and my gyno is just missing it????

I have had infections in my life - some caused abnormal paps.
They were treated with cleocin cream - then they cleared.
This was in 1986 and 1995 and 1996. I have also had yeast
infections. But between 1995 and 2007 my paps were all normal.

The itching also seems to be cyclical - like worse just before
my period and then when I get my period it goes away and then
returns and then goes away again.

My mind is just running away with me right now.

Thanks for listening.
Marie

 
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