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Old 09-28-2008, 08:52 AM   #1
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Confused About HPV Testing

I don't understand something that's been posted here because I'm new to these boards. Some posters are saying even though they had a normal pap smear their doctors did further testing for HPV, like testing in the canal, etc. I wanted to know what prompted the doctors to do further testing. Did the posters have a partner with HPV and ask for further testing, or were symptoms present, or did the doc do it to be more thorough with no request from the patient?

Should everyone who has ever had sex now and/or in the past request additional testing even if their pap smear was normal?

Thanks!

 
Old 09-28-2008, 09:21 AM   #2
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Re: Confused About HPV Testing

What a great question. I'm probably one of the people who is causing confusion because I've never had a pap concern, yet I ended up with cervical cancer.

I started getting paps when I was 19 and became sexually active. I had paps EVERY year thereafter. They ALWAYS came back good. I am 45 and have had very few sexual partners.

I have always gone to a Family Practicionar (or GP) for my paps. I've never been pregnant, partly by choice, partly by chance. I had no need for a gyn.

The FDA approved the HPV/dna test for women 4 or 5 years ago. Last year (mid-summer) my GP started asking women over 30 if they wanted the HPV test when she did the pap. Since my results have always been good, my doctor was ready to extend the time between my paps (to every other year or every third year). She offered the HPV test, I said yes. I didn't think anything about it. Heck, I didn't KNOW anything about it.

A few weeks later I got a call that I needed to come in to talk to Dr. F about my pap and HPV results. Hubby went with me. We were SHOCKED! My head was spinning. Later that week I scheduled a SECOND appointment with her just to discuss the HPV. She said we would wait 3 or 4 months and retest. Since I was so freaked out she said she could go ahead and send me to a gyn. My doctor kept saying "There are soooo many steps between this test result and cancer: CIN1, CIN2, CIN3, CIS."

I had an appointment with the gyn and scheduled an appointment for the colpo. When she did the colpo she didn't see ANYTHING wrong with my exocervix. She didn't take ANY biopsies. "Just to check" she did an ECC. It hurt for about 3 minutes, but I am soooo glad she did it. The ECC came back "atypical glandular epithelial lesions" and adenocarinoma in situ.

A week after those results came back I was in for an cold knife cone biopsy. The cone biopsy showed ONE adenocarincoma lesions (staged Ia1). It was 1.6mm wide and 1mm deep (a dime is 1mm thick). This was actual invasive cancer.

The week after those results were in, I was at a gyn/onc's office listening to my options because she said "you WILL have a hyst in the next 6 months or so, but you can choose how you do it." WOW!

Saying my head was spinning is the understatement of the century! I never had a bad pap. I never had any symptoms. Yet I had cancer.

I now know that paps only detect SOME of the dysplasia that can be going on with the cervix. The doctor can only scrape the outer third of the cervix. The colposcopy can only see a little more than that. The ECC is the only nonsurgical way that a doctor can "see" what is going on in the endocervical canal.

My mission now is to tell every woman over 30 to ask for the HPV/dna test when they go for their pap. Don't EVER miss a pap. And if a woman ever has to have an colpo to ask for an ECC "just to check."

My cancer (adenocarcinoma) is generally only found on ECCs, unless it is further advanced and some cells show up on a pap or are growing on the exocervix and caught during a colpo. That is just how adenocarcinoma is.

I'm sorry if any of my story has caused confusion. When I first joined the boards I use to type out my full story in almost every post. Then I decided to pare it down and get to the chase. I hope by me going into detail now, that it helps you understand why I am in the small percent of the population and why I recommend the steps I recommend.

As an addition, I think we will see a dramatic increase of women who have been like me appearing online seeking information. Many doctors are starting to offer the HPV test to women over 30. So many women are learning of their HPV status. Many people (men and women) assume the HPV is a recent infection, but the reality is that it can be in the body for decades and cause no symptoms. That makes me so mad that HPV behaves as it does and can wreck lives and possibly marriages!

My prayers are with all women who are dealing with this horrid virus and the people who love them!


Be strong. Be educated. Be proactive. Live!

Last edited by Pickle Eyes; 09-28-2008 at 09:28 AM. Reason: sp - hope i got them all!

 
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Old 09-28-2008, 10:06 AM   #3
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Re: Confused About HPV Testing

First of all, I'm so sorry you had cervical cancer and secondly, I'm so sorry you had to rehash your story and post such a long explanation for me, but I'm glad you did. Maybe some other new viewers of this board haven't read about your experience and will learn from your new post and ask for the HPV/dna test, I certainly will the next time I go for my yearly PAP exam. Additionally, I will tell my Mom and every woman I know about it, so your advice will go a long way beyond me to help women.

I have been telling my male friends about the danger of HPV to them, they had no idea that males are at risk as well as women.

Discussing HPV testing brings up another question. Why are some doctors recommending no pap smears for women over 65 who have had normal pap tests? According to the posts here, HPV can become active after decades, so why stop testing women over 65? I don't understand, unless it's a cost effectiveness issue, like reducing yearly pap smears to every three years, but now I know from your post that both these recommendations for women should not be followed, and every woman should insist on a yearly pap smear and HPV/dna test.

Thank you so much for caring and taking the time to respond to my inquiry.

Last edited by jacal5; 09-28-2008 at 11:17 AM.

 
Old 09-28-2008, 07:57 PM   #4
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Re: Confused About HPV Testing

You are very welcome Jacal. I really don't mind "rehashing" the details. I just worry about saying the same thing over and over again.

As far as women over 65, I think it is a cost effective thing and I also suspect there is a reasoning of they don't have a lot of life left. THAT I think is bogus (not the real word I'm thinking - but that one is ok with the profanity filter here! ). My family lives into their upper 80s and 90s - and I plan to live that long, too. So those decisions (based on money and/or longevity) are poor reasons, in my opinion.

I've read plenty of women who have had hysterectomies and their doctors do not require them to come in for paps. That horrifies me! My opinion is "if you have a vagina and have ever been sexually active, then you need to be getting paps". But that is my opinion.

I suggest all women get their paps at whatever interval they are told. If a woman thinks the timing between paps is too long, then she needs to have a serious conversation with her doctor as to why she thinks she needs them more frequently. Perhaps she needs to get a new doctor who will test more frequently than the minimally suggested interval.

I think many doctors are not consistently offering the HPV test to women over 35. My doctor, however, is diligent about offering and even strongly encouraging women giving permission for the best . . . because of my results! She said that she still looks at my lab results and shakes her head in disbelief that it was actually cancer.

The sad thing is that I am not alone (or is that a good thing?). Many of the women who are diagnosed with adenocarcinoma have histories similar to mine.

 
Old 09-29-2008, 06:18 AM   #5
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Re: Confused About HPV Testing

I know what you mean about the "too old for testing mentality". My mom is 79 yrs old, and her doc did not want to retest her for h-pylori after he gave her antibiotics to get rid of it, even though she still had symptoms, he told her he "assumed" it was gone!

We forced his hand by taking Mom to the emergency room, she was treated by a wonderful, understanding ER doctor. After we told the doc we didn't know if she still had h-pylori, he wrote in her medical record that she needed to be retested for h-pylori, so her regular doctor was obligated to perform the testing, and it turns out she still has it! I was so upset with her regular doc for putting her health in jeopardy, I told her to find another doc.

I had another incident with Mom where she was hospitalized for fainting, and the hospital cardiologist didn't want to give her a stress test because "it was unnecessary" even though she has a history of high cholesterol, high blood pressure, and heart attack deaths in her immediate family. I insisted she have a stress test, the cardiologist relented, and to make a long story short, she was diagnosed with atrial fibrillation due to the test and put on blood thinners. It's very possible that I saved her life that day when I confronted the cardiologist!

As you can tell from my experiences, I don't trust any doctor's recommendations about anything, testing intervals, medication, etc. I do my own research and tell them what I want, or don't want. Some of them don't like it when a patient is self-educated.

I read something interesting about HPV on another site, it seems some researchers don't think that HPV lies dormant from years ago because the body gets rid of it, they think a HPV diagnosis is from a new infection.

Take care.

 
Old 09-29-2008, 07:12 PM   #6
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Re: Confused About HPV Testing

Quote:
Originally Posted by jacal5 View Post
As you can tell from my experiences, I don't trust any doctor's recommendations about anything, testing intervals, medication, etc. I do my own research and tell them what I want, or don't want. Some of them don't like it when a patient is self-educated.
I go to appointments with AT LEAST a list of concerns, sometimes I go with pages of questions. If a doctor is impatient or dismisses my concerns, then I find a new doctor.

Doctors are our employee, they can be hired and fired.

Quote:
Originally Posted by jacal5 View Post
I read something interesting about HPV on another site, it seems some researchers don't think that HPV lies dormant from years ago because the body gets rid of it, they think a HPV diagnosis is from a new infection.

Take care.
I think there will a large body of data in the next few years, since the test (hpv/dna) is now a new standard of care esp for women over 30.

Take care.

 
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