I have been associated with the ORal Cancer Foundation for about a year and a half now. I first got involved due to my brothers passing of tongue cancer, I wanted to organize a memorial walk and donate the proceeds to an organization devoted to the needs of oral cancer patients, while also creating awareness of the disease. My brother and our whole family had never heard of this disase before and once we learned that he would be here today if he knew the signs of oral cancer, Ihad to do something to help others. I could not help my brother win his battle but I could help others know the signs so they would not have to experience the extreme pain and suffering he endured. I found the OCF, talked with Brian Hill,the founder, and was totally inspired by his own battle and his dedication to spreading awareness. The survivor forum on the site is a place where oc patients/caregivers can express their concerns, give advice and just be a friend. I have never been so inspired before when I read the caring messages each member sends. Without this avenue, these people have nowhere to go. Oral cancer victims now have a place to go and know that people will listen, care and support. I wish my brother knew of the OCF while he was sick, he could have received great information and support. This organization is a beacon of hope for so many. Brian Hill is relentless in his pursuit of making people aware of this disease and supporting research programs devoted to oral cancer preventiveness. I now help the OCF in its efforts by helping others plan events to support the foundation efforts. My life was changed in an instant the day my brother was diagnosed. My life today is rewarding because I am making a difference in peoples lives. The OCF is making a difference in peoples lives - -by its programs, their research, their support, their guidance, and most of all hope.
The best site in the world for Oral cancer patients, caregivers, friends and family. I was a Stage IV and went through treatment without the benefit of this site. After my treatment was over the Founder saw me post on another OC site where it could take days to get a response and invited me to join the OCF which I did. I asked a question and in 15 minutes has 6 responses. I have been a regular poster ever since as I will never let someone go through this barbaric treatment alone like I did.
Alex: How do you get guidance, reliable information and survivor and caregiver support for a cancer, which is growing in number, but some think is "infrequent"? Well Alex, the answer is The Oral Cancer Foundation. Bells, Whistles, and I win. But those with Oral Cancer have won too as they have found a place to share with those with those who have "been there" about a cancer that can have devastating effects to people's ability to eat, speak and enjoy what they can of a much shortened life. I've often said that there are far too many Oral Cancer angels walking the streets of heaven, but it wouldn't be like that if Brian Hill, the founder and an oral cancer survivor himself, had it his way. He and the staff of the Oral Cancer Foundation work tirelessly to "get the word out" with dentists, general practitioners and the general public about this deadly cancer. While the information and support forums become lifelines for us cancer patients, the REAL work of the foundation is about trying to get to the stage where no one needs those Forums. The partnership with the Paltrow family has helped OCF, but it is a long way from the goal of having the profile that Oral Cancer deserves to save lives. For me, I was first diagnosed with oral cancer in 2004 and had about 1/2 of my tongue remove - left side. I went through 32 radiation treatments and eventually even returned to work. I didn't find the Oral Cancer Foundation until after my first surgery, but I sure wish I had. The experiences and advice from those who had walked this path before me would have been invaluable. I considered myself fortunate to have at least somewhwhat recovered and I was thankful to be able to, perhaps, help someone else. Then - in the spring of 2007 - the other shoe dropped and I went through months of tests to FINALLY diagnose a recurrance. Without the support of the OCF "Family" I wouldn't be here today. They helped me try to keep my fears in check while simultaneously encouraging me - strongly - to not give up the quest for a diagnosis. Biopsy after biopsy, they supported me. After a diagnosis was finally made in September of 2007 I went through another surgery. Without information from the forum, I doubt that I would have pressed for a SECOND round of radiation - despite the general perception that you can only have radiation once. This second radiation (with some chemo) saved my life. Ergo...the forum saved my life. What can one say about the excellence and dedication of others? Just plain amazing. Check in at about 2am almost any night and you will find the founder Brian Hill online answering posts. And yes, he still has his day job! This Foundation truly deserves all the accolades it can get. Donna Butcher (Pandora99 on OCF)
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 Oral Cancer Foundation was a LIFESAVER for our family when my husband was diagnosed with stage 4 squamous cell carcinoma, base of tongue in 2003. The support we received through the OCF site and the OCF forum was irreplaceable!!! I truly don't know how I would have made it through the toughest year of my life without OCF...the organization ROCKS!