Ovarian Cancer is about women.  Ovarian Cancer is more than statistics, treatments and diagnoses.  We want to use the stories of the women affected by this disease to teach, encourage and give hope to others who will go through this disease.  Please watch the following movie about how your story could help others.

httpv://www.youtube.com/watch?v=fKAPIvFfZSE

What is “Let’s Talk?”

“Let’s Talk” is a personal history campaign aimed at archiving the stories of women who have battled gynecologic cancer, and those who support them.  The best way to teach, to inspire, and to give hope is through the stories of those who live with, through, and beyond cancer.  Join in as others talk about their experiances with treatment, share about challenges, and celebrate victories… ”Let’s Talk!”

How will these video be used?

The purpose of these stories is to act as a person-to-person resource for others who wish to learn from other personal cancer experiences.  These 2-3 minute stories will be available for public access onwww.youtube.com/wordoncancer and certain DVD mailings done by WORD.  WORD does reserve the right to not use or remove interview pieces from this project, but our goal is to use as many stories as possible.

Where can I see more of these stories?

Our goal is to publish as many edited stories as possible at www.youtube.com/wordoncancer, so check regularly to see when new ones are uploaded.

How can I help?

WORD is available at certain events to record these interviews, check our blog to see where we may be heading next.  if you have several who might be interested in being recorded or you live in Ohio or Indiana contact us thorugh email ([email protected]) to setup a time that we can record your story.

Can I get a copy of these videos?

If you would like to requested a DVD version of these pieces, please email ([email protected]) and let us know.

Some other examples:

httpv://www.youtube.com/watch?v=VqZfOlhH-Ik

httpv://www.youtube.com/watch?v=oNs4t4fpp9E

Tomorrow, an otherwise normal Friday, is “Wear Teal Day” in honor of Ovarian Cancer Awareness Month. In homes, schools, workplaces and parks people will wear teal;  I don’t know about you, but teal is probably not my color, so wearing teal is never considered normal to me. However, I will wear teal; not because I look good in it, but because I believe in the cause it stands for:  OVARIAN CANCER.  I wear teal because I have met and watched people lose too many women whose lives were ripped apart by this cancer.  I wear teal because I want more women to know about ovarian cancer, and I want a CURE!

When people stand up by branding themselves with an otherwise nondescript blending of blue and green they are identifying with a cause for this one day.    Though they have taken some action; getting dressed is harder work for some than others, they have simply identified that they are aware that there is a cause known as ovarian cancer.  This is good, but we hope for more:  we hope they become part of a movement.  A movement brings together people of all walks of life to make a difference and bring about change.  A movement does not stop until the goal is accomplished.

A movement needs people to talk, stuff envelopes, make phone calls, writer letters, tell stories and so much more.

The “Wear Teal Day” is about more than just wearing a color that identifies with a cause, but rather it is one of the first steps to being involved in a movement that might save your mother, sister or daughter’s life.  As I think about the idea of this movement that I joined just  a few years ago, I am struck that this does not happen in a vacuum.  It takes multitudes of women, multitudes of men, and multitudes of groups and organizations focused on defeating ovarian cancer.

Over the last three years I have met so many amazing women and men who are leading this movement.  As I sit down today to try to understand some of these people, I have identified several of those leaders’ roles:

This past week, when reading a mail-delivered local newspaper, my wife saw a headline that she knew would interest me.  It said, “Before Vaccinating daughter for HPV, consider the facts.” (click here to download a .pdf version, page 21 is the article) Well I certainly agree with that headline.  Unfortunately, over the next few sentences and paragraphs I was discouraged to read several false statements, I felt I needed to write some sort of response..  Here is what I wrote in response.

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As executive director of Women’s Oncology Research & Dialogue (WORD), a Central Indiana-based gynecologic cancer research and education organization, I would like to respond to the article by Carol Rossetti, N.D. in the August 17, 2010 edition of Current in Carmel about the HPV vaccine.

First, I agree on many points in the article.

1.  The administration of the HPV vaccine is an important decision of each girl, young woman, parent and mentor.  The decision should be made jointly, considering all facts.  A completely informed decision is critical to the success of our current and future health care system.

2.  The HPV vaccines are relatively new vaccines (first approved 2006), and there is always much to be learned.  It is only through the continual scrutiny and analysis of the worldwide distribution of these vaccines that the goal of the eradication of cervical cancer is a reality.

Due to the necessary brevity of this reply – let me present you with a few fast facts about HPV and cervical cancer and refer you to hpv.wordoncancer.org to find a listing of resources (both pro and con) for learning more about HPV, the HPV vaccine and cervical cancer.

Fast Facts:

1. HPV, the Human Papillomavirus, can cause cervical, among other cancers, and is a common virus that can be passed from one person to another during sexual activity. Early vaccination is one measure to help prevent HPV.  Up to 80% of sexually active women are infected with HPV at some point during their life.[1]

2. Cervical Cancer affects over 11,000 women in the United States and is the leading female cancer killer among women in many developing countries.(cite)[2]

3. Vaccination against HPV is recommended by the American Academy of Pediatrics, the Centers for Disease Control and Prevention, the American Academy of Family Physicians and the American College of Obstetricians and Gynecologists. We now know that the currently approved vaccines, coupled with following annual exam and pap test recommendations along with appropriate physician action can and will prevent nearly all deaths and ultimately occurrences of cervical cancer.  (cite)

3. The vaccine has been tested and continues to be monitored to be safe.  As with any new medicine, information is constantly being monitored.  The vaccine prevents only certain strains, particularly focusing on the the two “high-risk” strains 16 and 18, which are known to cause over seventy-percent of cervical cancer cases.   In 2009, after three years of reporting, there were 32 deaths “potentially” linked to the HPV vaccine[3]; nationwide, 4,210 women died from complications from cervical cancer last year, and 12,200 were newly diagnosed.[4] This does not include the amount of women who had pre-cancerous lesions removed, which were found during pap screening, nor the amount of women who are affected by the cancer due to inadequate health care.

4. There are currently two vaccines to prevent HPV infection (Gardasil and Cervarix). Both vaccines are created from inactive forms of the virus, so there are no risks of contracting HPV from the vaccine.  These vaccines are currently recommended for girls and young women ages 9-16 and have been approved for the prevention of HPV in boys and young men.

5. I was unable to locate an article from the “Journal of the American Medical Association” cited by Ms. Rossetti in which she states “the death rate for cervical cancer is on par with the death rates from Gardasil.” The most relevant JAMA articles that I could find were a series of letter and articles run in the August 19, 2009 JAMA (http://jama.ama-assn.org/content/vol302/issue7/index.dtl).  This edition included an article by   Drs. Shelia and David Rothman, PhD on the marketing of HPV vaccine.  Part of their conclusion stated, “the new vaccine against 4 types of HPV … appears to be a cost-effective intervention with the potential to enhance both adolescent health and the quality of their adult lives.”

In conclusion, WORD, clearly advocates for an informed consent in regards to the HPV vaccine and all other medical care decisions. Speak with your doctor, read the documentation and seek out wise counsel. Our hope is that girls, women, parents, mentors and advocates will learn more so they can practice informed proactive health decisions.

A complete list of references, including footnoted mater can be found at hpv.wordoncancer.org

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[1]Dunne EF, Unger ER, Sternberg M, et al. Prevalence of HPV infection among females in the United States. JAMA. 2007;297(8):813-819.

[2]http://www.cancer.org/Cancer/CervicalCancer/DetailedGuide/cervical-cancer-key-statistics (accessed August 18, 2010)

[3]Adverse Events and Quadrivalent Human Papillomavirus Recombinant Vaccine—Reply

John Iskander, Claudia Vellozzi, and Barbara A. Slade

JAMA. 2009;302(24):2657-2658.

[4]http://www.cancer.org/Cancer/CervicalCancer/DetailedGuide/cervical-cancer-key-statistics (accessed August 18, 2010)

The “WORD on HPV” is an animated short story recently produced by WORD, with the goal of raising awareness of HPV infection and prevention, and it’s connection to cervical cancer.

To find out when the full 4min version of the animated story is released, be sure to subscribe to WORD’s eNewsletter at WORDonCancer.org