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!