A movement starts with one voice. In this case, it's mine -- but everyone's concern.
Doctors say HPV-associated throat cancer is becoming a pandemic among non-smoking, middle-aged men.
Haven't heard about it? I didn't know anything about it until last March when my husband, Jeff, was diagnosed with the HPV-16 strain, the human papillomavirus that causes oropharyngeal cancer in the throat, tongue, or tonsils.
A week after he was diagnosed with HPV-associated throat cancer, we were preparing for treatment: simultaneous radiation and chemotherapy for seven weeks. Jeff was snapped under a netted mask onto the radiation table every day for two months. He visited the chemo infusion clinic once a week for two hours. He relied on a feeding tube and liquid diet. He lost 45 pounds and it changed his life.
My emotions ran the gamut but mostly I felt helpless.
Until I decided I could help.
As Jeff underwent treatment, I spent the months working my day job at home so I could care for him. When he slept, I educated myself about HPV throat cancer. What is it? How could he get throat cancer when he has never smoked? What I learned is what YOU need to know.
Anyone can get HPV through vaginal, anal, and oral sex -- in fact, according to the Center for Disease Control (CDC), at least half of the sexually active population will have HPV at some in their lives. As many as 50 to 80 percent of middle-aged men may carry HPV. For undetermined reasons, maybe cultural, Caucasian men are most susceptible to HPV-associated oropharyngeal cancer at this time. HPV is usually contracted in the early 20s, when people become sexually active.
HPV sits dormant in the body for decades... then emerges.
That's why middle-aged men who got it when they were young are now fighting HPV throat cancer.
Only certain strains of HPV cause cancer. The HPV-16 strain causes throat cancer.
The Pap smear screens for HPV in women but there is no formal screening for HPV in men.
There has been some media coverage about HPV throat cancer, yet not on a wide scale given this is a national -- if not global -- pandemic. That's why I am building an informational multimedia website called hpvandme.org that will be a user-friendly, first-stop resource with information about prevention, treatment, research news, and support. Creating awareness about HPV throat cancer is my way of helping while feeling so helpless.
My goal is to start a movement. One voice that grows into a collective voice because HPV-associated throat cancer is spreading, and more and more men will have to fight it. Early detection is important because once the cancer is no longer localized in the throat and spreads, surgery may no longer be an option. In such cases, like my husband's, evidence of cancer in the lymph nodes prompted his oncologist to order the harsher radiation and/or chemo treatment.
Scientists have been studying HPV throat cancer for less than 10 years. They need support to find better treatments and ultimately, a cure. Researchers are still determining the best treatment plans for HPV throat cancer. They know HPV throat cancer is different than throat cancer caused by tobacco and alcohol. In the meantime, because the outbreak is more recent and treatment for HPV throat cancer is less proven, often the more aggressive treatment used for a smoker's cancer is prescribed. Our doctor told us while it may be overkill, it's better to over-treat, rather than under-treat the cancer.
Doctors say the prognosis for HPV throat cancer patients is good -- if detected early. If we start learning and spreading the word about HPV prevention and cancer now, we can reduce the risk.
I have learned of other HPV throat cancer patients. After treatment, they can no longer produce saliva, taste foods as before... One man lost his jaw, tongue, and ability to speak. And women can get HPV throat cancer, too.
We still don't know if Jeff is cancer-free, but he is living "life to the fullest."
Strong, active men like Jeff won't think to seek medical help when they feel a lump in their throat or have difficulty swallowing. Public education will hopefully change that. Young men and parents of boys should also know that the CDC recommends HPV vaccines for boys as well as girls. While there has been controversy about the Gardasil HPV vaccine, it is considered an effective way to fight back.
I am not a doctor. I am a journalist spreading the word. One voice = many voices = CHANGE.
For more information, watch this report.
Please help me spread the word. The site will launch in 2013.
In the meantime, please share this link about this project with everyone you know.
For more by Pamela Tom, click here.
For more on personal health, click here.