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The Oral Cancer Foundation
July 13, 2009

I am an oral cancer survivor. My story is not important, but I would like to give you an idea of what The Oral Cancer Foundation means to me and others who suffer from oral cancer, one of the cruelest cancers of all. Oral cancer is aggressive, and unforgiving, with a 50% five-year-survival rate, and a gruesome death sentence for many. For this cancer, the treatment is dreadfully barbaric. The surgeries, radiation and chemotherapy, lead to permanent problems and disfigurement, in addition to being extremely painful. The treatment compromises the ability to eat, chew and swallow. Many oral cancer survivors have to relearn how to speak. Total tooth extraction and hearing loss are not uncommon, as well as depression. Taste buds are destroyed, as are salivary glands, resulting in permanent dry mouth. Frequently the thyroid gland is rendered nonfunctional. Recurrences are not uncommon, and sometimes an individual survivor experiences more than one. Approximately 34,000 Americans are diagnosed with oral cancer each year. Compared with other cancers which are high-profile, such as breast cancer, oral cancer is poorly understood by the general population as well as the medical community. Many oral cancer survivors are misdiagnosed for months or longer, losing precious time needed to begin the fight against this very aggressive disease. Too many are not diagnosed until they are stage 3 or 4, resulting in poor prognosis. The treatment is harsh, and employs methods that have not changed appreciably in years. The treatment must be completed or the patient will die. Those who die of oral cancer suffer painful and miserable deaths which scar their caregivers and families forever. The Oral Cancer Foundation does many things. It has extensive information and current research on oral cancer included on its many web pages, and it sponsors peer-reviewed research when funding is available. OCF conducts free oral cancer screenings for the public, and educational seminars for dental professionals. I would like to focus on one important facet of the foundation: The Patient/Survivor Forum ([url=http://oralcancersupport.org/forums/]http://oralcancersupport.org/forums/[/url]). I was fortunate; I found OCF the day I was diagnosed. I have had the total support network of the forum from the beginning. The other survivors and caregivers calmed my fears, answered my questions, and gave me the emotional support that is so important in combating this horrible cancer. The OCF Forum and its caring participants have literally SAVED LIVES! I would very much appreciate you taking five minutes of your time to read one of the recent “threads” on The Patient/Survivor Forum that saved one of our own from a certain painful and tragic death. She goes by “Sone”, and is a 40-year-old, stay-at-home mom, diagnosed with stage 3 tongue cancer. She has completed extensive surgery to remove the tumor and restructure her tongue. She had 34 lymph nodes removed from her neck, one of which showed the spread of oral cancer cells. The protocol for positive cancerous lymph nodes is to irradiate the mouth and neck with or without concurrent chemotherapy. “Sone’s” radiation plan called for 33 treatments, five days a week for six and one-half weeks. The pain she experienced was excruciating and she discontinued the radiation after 14 treatments. “Sone” posted on the OCF Forum, asking to hear from others with their similar experiences of stopping the treatment. Truth is crucial on our forum and often blunt and brutal, but embraced by compassion. The following link is an unedited copy of “Sone’s” original post and subsequent replies from our OCF Family. The thread is still active, with “Sone” posting daily. As of today, July 13th, Sone has completed 25 radiation treatments with 8 remaining. Way to go Sone!!! PLEASE, PLEASE, READ THIS: ([url=http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=99349&page=1]I stopped my IMRT by Sone[/url]). Catherine OCF Member and Supporter Oral Cancer Survivor!

The Great!

I've personally experienced the results of this organization in...

SAVING THE LIVES of People with Oral Cancer.

Ways to make it better...

If I had to make changes to this organization, I would...

be Brian Hill. Nobody could do it better!

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

the Accurate and Extensive Information provided about Oral Cancer.

The kinds of staff and volunteers that I met were...

Online in the Forums, fellow Oral Cancer Patients and Caregivers, and now Family.

If this organization had 10 million bucks, it could...

Educate the World about Oral Cancer Prevention, and Find a Humane Treatment Protocol which would Greatly Increase Survivorship of Oral Cancer Sufferers.

Ways to make it better...

I had never gotten Oral Cancer.

In my opinion, the biggest challenges facing this organization are...

the Desperate Need for Increased Funding.

One thing I'd also say is that...

Please Support The Oral Cancer Foundation!

When was your last experience with this nonprofit?

2009

MY ROLE:
Client Served & I am an Oral Cancer Surviver, Member and Donor to OCF.