Thursday, December 29, 2011

What You DON'T Know about HPV and Oral Cancer Could Put Your Child At Risk

When I was first diagnosed with tonsil cancer, I presumed it was because of my history of drinking.

I was wrong.

My tonsil cancer is a result of the Human Papillomavirus, commonly known as HPV.

What I have learned about HPV and oral cancer in the past six weeks is frightening.  If you are a parent of a child between the ages of 9 and 12, or if you will ever be a parent of a child between the ages of 9 and 12, PLEASE read on.

I had heard of HPV before; I knew it was linked to nearly all cases of cervical cancer in women.  I knew a vaccine existed (Gardasil is the one I had heard of) but that there was some controversy surrounding the recommendation to vaccinate girls as young as 9, because it is considered a sexually transmitted disease.

I filed all this information away in my head, and resolved to talk to Greta's pediatrician about it when she got a little older.  Until my own recent experience, I never would have known that HPV is an issue that effects Finn, too.

Here is what I didn't know: HPV is behind what doctors are calling a "growing epidemic" of oral cancers in young adults - people as young as their 30s and 40s (typically, "lifestyle" induced cancer - oral cancer caused by excessive alcohol or tobacco use - doesn't present until people are in their 50s or 60s).  A doctor at Dana Farber in Boston was quoted recently as saying that he is seeing "at least 2 or 3 new cases of HPV+ oral cancers a week."

BOTH men and women (although men make up the majority of the HPV+ oral cancers) are at risk for HPV+ oral cancers, which means that BOTH boys and girls should be vaccinated, and doctors are recommending this as early as age nine, as oral HPV is easily transmitted - from skin to skin contact.  It is said that it will become known as "the kissing disease".

The statistics surrounding HPV are staggering.  As many as 24 million Americans are actively infected with HPV at any given time, with an additional 6 million new infections per year. The virus is typically short-lived (up to about a week) and asymptomatic. Most people never know they had it.

By age 50, 80% of women will have been infected with HPV.

Caveat:  I am clearly not a medical doctor, so I am relating in layman's terms what I have learned from my team of doctors in the following paragraphs.. obviously consult your own physician for more information about HPV before making any decisions to vaccinate your child.

What makes HPV tricky is that a person is typically infected in his/her teens or early adulthood.  The virus is 'live' in a person's system for about a week - this is the ONLY time a person is infectious. After the virus leaves the system, the person is no longer contagious, and is also immune.

However, for a small percentage of people, the virus leaves a remnant behind, at a cellular level. If this remnant becomes entangled (for lack of a better term) with the DNA of healthy cell, thus creating an abnormal cell, then tumors develop.  This process can take decades to develop.  Most people infected in their teens (or young adulthood) don't develop HPV+ cancers until years down the road, and for oral HPV there isn't a reliable way to test for its presence in your system.

Being HPV+ does not mean you will develop cancer. In fact, the majority of people who are HPV+ will not get cancer because of it. To date, though, it is not known why some people get cancer and some don't.

HPV is relatively simple to find in the cervix, and a check for HPV is routinely done during an annual pap smear.  A vaccine for the most dangerous strains of HPV is available for girls (and now boys) starting at age 9, and to date it is the only known weapon against preventing HPV related cancers in the future.

It is not possible, however, to reliably test for the presence of oral HPV, as there are too many 'nooks and crannies' for the virus to hide in.

The bottom line?

PLEASE talk to your child's pediatrician about HPV.   This is not just a cervical cancer virus anymore, so mothers of boys - especially because MORE men than women will get HPV+ oral cancers - need to talk about getting their boys vaccinated as well.

Some parents are hesitant to talk to pediatricians about it, or to vaccinate their children, because HPV carries a stigma of being a sexually transmitted disease.  Some parents are concerned they are encouraging promiscuous behavior by vaccinating their children at such a young age.  I'm here to tell you that a simple first kiss, or other innocent skin-to-skin contact, can also transmit this virus.

As I lie in my immobilization mask with radiation beams aimed at my increasingly sore neck and throat, I think a simple vaccine is a very wise step to take indeed.

For more information about oral cancer, including symptoms, click here.

For more information about HPV and oral cancer, click here.

For more information about the HPV vaccine, click here.


  1. Thanks for taking the time to write this. I still have concerns about the vaccine. I am especially concerned about how it might affect the reproductive health of my girls (and boys). It still seems so new and I wonder what will come about in the future. But, I was not aware of the later in life implications of HPV for boys and girls and young adults. So thank you for at least getting me thinking about it. I wll definitely be speaking to doctors about it.

  2. The more you are learning, the more you are sharing. Ellie, you are a miracle on two legs !~!

    Know you are being held up to Universal Healing Power as you travel this path of treatment.

  3. Nicole - You bring up a really good point, which is that the vaccine is fairly new and the long term effectiveness (or potential downsides) of the vaccine are not fully known. This is why it is SO important to talk to a doctor to get more information.


  4. Please also remember that the HPV vaccine does not protect against all type of HPV. Even vaccinated, you are still at risk for cancer caused by HPV.

  5. thank you for writing this (in easy to read terms). I will pass this along to everyone I know...thank you!

  6. Well said Ellie. I learned something from you today.

  7. Also, it is worth noting that many health insurance plans now cover the HPV vaccine as a regular childhood immunization.

  8. I must admit it has been a tough thing for me to adjust to also. But, I want my kids to be safe. I am so sorry that you are having to endure this trial.

  9. I am definitely vaccine-hesitant. My daughter is eight, and I just recently started looking into this one, realizing we will have to make a decision about it soon.

    Although I knew how easy HPV could be passed (and how condoms don't really do much to prevent it - at least not nearly as much as they do for other STDs - and that it doesn't actually take the act of intercourse to pass it along) I did not know about the connection to oral cancer.

    You have given me some new thought directions with this. Thank you for that.

    I'm praying for you!

  10. Good information. There is one silver lining in this dark HPV cloud - as I understand it, prognosis for successful cure of HPV+ oral cancer is better than non HPV oral cancer. In fact, prognosis for complete recovery is quite high.

  11. I had my daughters vaccinated for it two years ago through their school. Had no idea though that boys (like my son) should be vaccinated for it too though. Thank you, will bring it up with my doctor.

  12. Thank you for sharing this, Ellie. I had both of my sons vaccinated two years ago and our health insurance covered the cost completely. Both my sister and sister-in-law think I'm crazy and refuse to have their daughters vaccinated. I'm going to forward this post to them now.

    I hope you're holding up with your treatments. My thoughts are with you.

  13. While my cervical cancer was due to my being a DES daughter (diagnosed as a teen, recurrances through my teens and first part of my twenties, cancer free for over ten years now!), I became well aware of the risk of cancer with HPV before there was even a vaccine. My boys are vaccinated- just as soon as it was recommended for males. The vaccine may sound scary to some parents, and we all know that our children get a LOT of vaccines, but as a cervical cancer survivor, I can tell you that it is a small risk, compared to the risks associated with treating the cancers that arise with the most virulent strains of HPV! Thank you for talking about this on your blog-- it's something that I feel very strongly about, and I'm glad to see others talking about it as well.

  14. Thank you for the information, Ellie. I have a daughter and a son and I really thought the vaccine was only for girls too. I'll definitely talk to our pediatrician about it. I hope you are doing well through treatments!!

  15. Thank you for sharing. I had a hysterectomy at age 37 due to cancerous changes caused by HPV. HPV is a very confusing and complicated virus. While the hysterectomy got rid of the cells that had changed, I assume that I still have HPV in a dormant state. I got my daughter vaccinated as soon as possible and will have my son vaccinated too. I hope and pray that they come out with a vaccine or treatment for people who already have the virus. On another note, you are an inspiration in both sobriety and how you are facing this scary time with courage and grace. Thank you.

  16. How remarkable you are. In the midst of your own fight you write an important message to the world at large.
    How are you holding up? My thoughts and prayers are with you every single day. Lots of love.

  17. Thanks for the info, Ellie. Stuff no one wants to think about but that we all should think about ... and act on.

  18. Thank you so much for this, and I will be passing along your post to friends who have children--both sons AND daughters--in the relevant age groups. This is all news to me (the cancer/HPV connection), and I can't believe I didn't know about it before. My older son is about to turn 7, and I'll be sure to talk to his pediatrician about it a couple of years down the road.

  19. Thank you! My sons are10 and 12 and I assumed the vaccine was for boys only! I think of you often and your in my prayers!


  20. Oddly enough, we got our February issue of Consumer Reports yesterday, and it included an article on HPV and oral cancer. I went from having never heard of the connection (despite years of doing research down the hall from a HPV-focused laboratory) to hearing about it twice in one day.

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