After being diagnosed with tongue cancer in 2005 I started searching the internet for additional sources of information on Oral Cancer. I was fortunate to find The Oral Cancer Foundation which proved to be the most comprehensive and informative website on the internet.
Not only does this organization provide hundreds of pages of information, it also has a forum for patients and care givers to share their stories and get personal support from those that have been there.
At the time of my diagnosis I was a practicing dentist. (I am now retired) Through the OCF I have developed life-Long relationships with other survivors all over the world and I have been able to share the knowledge I have gained from the OCF with others. To this day every year I lecture to a class of senior dental hygiene students as part of their program. I share my story with them and turn them on to the OCF for information that they will be able to use to save lives.
Although I did not find the Oral Cancer Foundation until I was home recuperating from my tongue surgery, I have found it to be a way for me to expand my commitment to early detection of oral cancer. As a dentist and an oral cancer survivor, I have found myself in a very unique situation. Since joining the OCF in April of 2005, I have found a new meaning to the term "helping others". The number of people from all walks of life that spend hours of their precious time helping others get through this dreadful disease, is boundless. My OCF "family" have allowed me to meet some of the most generous people in the world. From Brian Hill, the founder, to people in my own neighborhood and people around the world, the OCF forum provides a place for us to gather and help and support survivors, as well as family and friends of oral cancer patients. Being a member of the OCF has spurred me on to be more pro-active in oral cancer awareness, than I ever was before. I have run 3 oral cancer screening events, written articles for local and national dental magazines, aimed at getting dentists to incorporate oral cancer screenings in their offices. I have been the top fund raiser for the OCF cancer walk in Harlem, NYC for the last 2 years. I will also be a speaker at a walk and fund raiser for the OCF this coming September. I try to get to the forum at least once a day looking for ways to use my background to help others. Many people, even the members, are not aware of the vastness of the OCF website. There is no other site that comes close to having the content that the OCF website has. Just looking at the home page, www.oralcancerfoundation.org, and the list of links there, will give anyone an idea of how much content is available. The Oral Cancer Foundation website truly is the only place to go for the "answers to questions, advice, support and inspiration".
My husband was diagnosed in Dec 08 and we knew nothing about oral cancer. Thanks to OCF for always being there with answers and news and advice. OCF has been my "go to" spot for over 4 years.
I found the Oral Cancer Foundation about a week after my husband was diagnosed with oral cancer. Neither of us was familiar with this disease and our treatment center was an hour and a half away from our home. We had lots of questions and the good members of the forum on OCF and the wonderful educational pages made our journey easier. For patients and caregivers, family members and friends, this is a resource that is a must have!
Oral Cancer has been and still is one of the orphan cancers. Not many people know that oral cancer kills one person per hour,everyday 24 hrs a day. I did not know this eventhough I have been in dental field for quite some time now. I came to know about this from the facts and stats put together by the oral cancer foundation. That was an eye opener. I came to the OCF web page while I was looking for information to help my sis, when got diagnosed with cancer of oropharynx. The information on this website and in the forums has been great help in going about the treatment and locating the resources. This is my personal experience. and the people at the OCF are amazing, everyone truly wants to help and lower the mortality rate associated with oc by raising awareness and helping people by giving them much needed information. Without the Oral Cancer Foundation there would not have been any awareness about the death rate and devastation it's causing in the world. The OCF has forums are extremly helpful & support those who suffer the burdens of the disease. The Ocf has made the research efforts possible to identify HPV as a cause of oral cancer, I think which is remarkable. OCF is the best source of information & facts about the oral cancer on the web,period. I believe the oral cancer community would be worse off if Brian Hill or oral cancer foundation will not be there to create awareness and inform everyone about oral cancer.
I love OCF. It is what has gotten me thru two round of oral cancer. The members are intelligent, caring and just plain amazing!!
The Oral Cancer Foundation has helped to give my husband new meaning to his life. Since his bout with Oral Cancer he spends a great deal of time helping others that are going through treatment. I know that he greatly values the friendships he has developed with other members of the OCF.
My name is Gerry.I am 51 and got Tongue Cancer in 2000. I have had multiple surgeries on my tongue w/ life altering consequences. I had a recurrence in 2007. OCFoundation has helped me tremendously. The site is a wealth of REAL facts. The news feed is A+. I check in with it weekly to stay updated on this rare cancer. The Drs could not possibly do this for me today. But most important, the support from the others who have endured this awful disease has been too valuable to detail here. One of my very best friends in life I met on this site. We have not met in person yet. But we met here about 4 years ago and the bond I share with her is one of the greatest gifts in my world. I am so thankful to the OCFoundation.
I am mainly an in the background type person and I was a friendly caregiver to my boss who had a FT caregiver so I helped out when I was needed. Without this site I wouldn't have understood what my boss or his wife were going through so it was priceless when I needed it. I continue to visit from time to time and I just find the people amazing in their desire to help others that are about to go through their fight with oral cancer. Anyone who thinks or knows they have oral cancer would benefit greatly by logging on to this site.
I found the OCF site 15 years after I was diagnosed and treated for squamous cell tongue cancer. My diagnosis had come as a complete surprise, as I had never smoked and had been told by multiple doctors that I was not at risk for oral cancer. Long after my experience with it, I was actually looking for good resources for a couple of friends who had been recently diagnosed, and was amazed at the amount of current, relevant information that OCF had to offer -- far beyond what I could find on other cancer-related sites. If anything like this had existed when I was undergoing treatment, it would have been an enormous help and support to me. As someone who went through major oral surgery and weeks of radiation without the benefit of OCF's support network, I can appreciate how much this site can provide to someone facing this disease.
I joined the OCF Survivor Forum in November of 2002, well before my treatment started, and the members of the forum there, and also information on the main site, helped me in ways that are unmeasurable. I have made many friends in all areas of the world and stay in touch with many of them to this day. Back in November of 2002 there really weren't any other oral cancer sites like OCF and there still isn't today. I have been honored to give back on the forum, what was so freely given to me. It has been a life altering experience for sure. I am certain that advice that I received there has helped me to survive the horrors of cancer treatment and it's aftermath. I have 6 years of being cancer free today and OCF was a major part of that. Conversely, it saddens me that I have lost so many friends to this horrific disease.
I found the Oral Cancer Foundation 2 years after my diagnosis. When I finally found the site it changed my life. Talking to people on the survivor/patient forum made me realize, not only are there thousands of people going through the same thing, it made me realize I could actually someone. I was lucky enough to actually meet some of the people in person and I feel blessed to have done so.
As a two time SCC oral cancer survivor diagnosed in 1997 and 2001, I can tell you I know the fear of going this road alone as there were no support groups out there for this kind of cancer. I joined the OCF in May of 2001 and have been seen the help that this charity brings to both patients and caregivers and their families. It has even managed to save a few lives but stopping a caregiver from cutting pain patches or getting someone to the ER in time. Here are a group of compassionate, well informed people who have been down this road and are willing to help you on your journey. Besides the marvelous forum, there is a large resource section on the web site wityh information on oral cancers, its treatment, side effects, dental issues, best hospitals, etc. and two search engines to help you fins what you need. There are lasting cyber friendships formed on the forum and the emotional suppsort is beyond my words. I never knew how much my cancer had affected my husband until we flew to Vegas to meet twenty some other patients and caregivers. He came home knowing he wasn't alone in his fears abd feelings and a much calmer man. Meanwhile, the founder of this charity, is out beating the bushes at conferences and government agencies to get better funding for this cancer and to get the word out that 'EARLY DETECTION SAVES LIVES'. One of the best charities going.
The second biggest help outside of my family, friends and co-workers was the Oral Cancer Foundation website and the Patient/Survivor message board contained within. The information contained on this site is squarely focused on Head and Neck Cancers. The message board is chock full of information, assistance and support, given by people who have gone through or were currently in treatments for this cancer or caregivers helping someone with cancer. Each person there has been touched by the effect of this grossly disgusting disease, from young to older adults, from all over the world.
I live in rural Vermont. When I was first diagnosed with oral squamous cell carcinoma, I began searching the web looking for information and support. Fortunately for me, I found the Oral Cancer Foundation. I posted my situation on the patients/survivor forum and was moved to receive immediate caring responses and support. All of the responses advised me to go to a big city with a comprehensive cancer center for proper treatment. I followed this advice and it probably saved my life. The local hospital told me I had clean margins. The Mass Eye and Ear Infirmary's pathologists were convinced my margins were not clear and recommended radiation therapy, which I received. Throughout the process, I communicated regularly with other patients and survivors on the OCF's bulletin board. I was and remain extremely impressed at the compassion and support that is expressed there. Make no mistake, this is a terrible disease and victims of it truly suffer. However, the suffering, anxiety and dread are alleviated and mitigated by the wonderful community that has formed at this foundation. I now help to keep a section of the OCF website up to date. That is the oral cancer in the news section and I regularly try to post articles of interest to both the lay and professional readers of this web site. I feel like it is a small way to repay the debt I owe to this foundation.
The Oral Cancer Foundation's website is full of information for oral cancer patients and their caregivers. Its founder, Brian Hill created a place where questions can be asked and support is shared. This is especially helpful to newly diagnosed patients who face fear and uncertainty. Its a very scary time and so many do not understand all the medical jargon and knowing which doctor does what. The Oral Cancer Foundation has saved my life. I found the site right after I was diagnosed with my first round of cancer. The forum members embraced me and helped me thru my treatments. They were there with me when I had my first recurrance less than a year later. The same warm, caring, knowledgable people are still there helping me now with my thrid round of cancer. I have met many of these special people in person and am proud to call them my friends. One story that shows how wonderful a site OCF is. A woman joined and said she did about 10 or her radiation treatments and couldnt continue due to the severe side effects. This woman had several young children that depend on her. Jointly thru encouragment and examples we got her to return to her treatments. She was so touched by all the responses and kindness of strangers she went back to finish her radiation.
The Oral Cancer Foundation is saving lives and the founder, Brian Hill, is one of the most hard working and selfless people I know. I have witnessed Brian tirelessly guide family members through difficult times, organize events to generate funds and educate others in order to end this deisease.
As an advisor to OCF and working within the dental profession for over 33 years, I have been touched by the many individuals who have turned to OCF when they needed help. OCF is the organization who steered many patients toward the right treatment center, the best doctors, and the absolute best advice for their individual situation. Brian Hill (Founder of OCF) is a champion, a survivor, and truly the most dedicated person I have ever met. I wish OCF continued success in all of their endeavors so their great work will continue.
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.