Frances Masterman Tells Her Story

  In August 2004, I attended a networking breakfast for businesswomen, focusing on cervical cancer. The morning of the event, I entered the meeting room, assuming I would be bored with health information irrelevant to me because I've always had normal Pap tests. Little did I know that what I heard would make me change the way I approach my annual doctor's visit and take a stand for my own health.

The keynote speakers included a cervical cancer survivor and an internist. They explained that cervical cancer is caused by the human papillomavirus (HPV) – a virus I had never heard of. What was even more surprising to me is that nearly every person gets one or more types of HPV at some point. Furthermore, I learned that women age 30 and older need to also request a test for HPV along with their Pap, and at age 50 that definitely meant me.

At my next gynecologist appointment, I asked for the HPV test, but my nurse practitioner said it was unnecessary unless my Pap came back abnormal. When I insisted that I wanted the HPV test along with my Pap, she protested – saying they'd have to charge me extra. (I found out later this usually isn't true, since most insurance plans pay for routine HPV testing). However, I was persistent and kept repeating that I wanted the HPV test for "extra peace of mind." I told her that I had recently met one woman who had developed invasive cervical cancer despite having normal Paps.

Finally, she agreed and ordered the HPV test for me. My difficulties were almost over, but not completely. I made sure to check back with my doctor's office, asking for the results of both tests. I learned that despite the request from my doctor's office, the lab my doctor works with didn't perform the HPV test because my Pap was normal. So, I had to request it one more time. Having to ask for the test repeatedly was difficult, but I knew that at the end of the day I am the only one who can truly take responsibility for my own health.

When the results came back, both the nurse practitioner and my doctor were shocked: I had tested positive for a high-risk strain of HPV, even though my Pap was normal. That meant I needed to be re-tested in six months to a year. I knew from the breakfast I attended that it's only when HPV infections don't go away on their own – like they usually do – that abnormal cells may start to form. So, over the next 18 months I got retested two more times (my follow-up results showed I still had HPV, so I was retested a third time) to ensure that results of both my Pap and HPV tests were normal.

Now, I can rest easier knowing that I've done all that I can to prevent cervical cancer. And while I'm not at risk now, I still plan to get screened for HPV every three years along with my Pap test, which will be easy given the partnership I've formed with my doctor and the fact that since my first appointment he now routinely screens all women 30 and older for HPV.

This experience taught me the importance of not being afraid to ask questions and make decisions with my doctor, rather than letting him make all of the decisions for me. Demanding the HPV test may have saved my life. To help educate other women, I told my story to MORE magazine (PDF).

Here are some tips to ensure you get the HPV test:

  • Arm yourself with the facts about cervical cancer, HPV and the HPV test. Read the information in this Web site thoroughly. Doctor’s offices are very tight on time these days, and they will be more receptive to your requests if they can tell you have "done your homework."
  • Call your doctor's or nurse’s office before your next exam to find out if the HPV test is offered as part of routine screening for cervical cancer, along with the Pap. Remember: Make sure the office understands that you want the HPV test no matter what the Pap test shows. Some doctors and nurses only order an HPV test when your Pap results are inconclusive (called an "ASC-US" Pap).
  • If your doctor or nurse says the office does not order HPV testing for all of its patients who are 30 and older, indicate you’d like them to make an exception for you.
  • If your doctor or nurse (or the office staff) responds by saying he/she doesn't think routine HPV testing is necessary, the simplest way to respond is to say that you would still like to have the test "for my extra peace of mind."
  • Follow up on test results. Keep calling until you receive an answer regarding your test results. Had I not followed up, I never would have known that they didn’t run my HPV test.

Most doctors will honor your wishes on issues such as this. If not, remember that you are the one who is ultimately responsible for your health. You need to decide how important it is to have a healthcare provider who partners with you.