The Oral Cancer Foundation

It was back in 2019 when my regular dentist was doing a routine dental exam. She grasped my tongue with a piece of gauze, and said something to the effect of “and what do we have here? How long have you had this white spot on the bottom side of your tongue?” My response, mouth full of gauze, was “what white spot”.

She was adamant that I needed to come back in two weeks, and if it had not subsided, she’d refer me out for an oral surgeon for a biopsy. She was great at teaching me the seriousness of staying on top of this painless white lesion, that could potentially be cancerous. I knew nothing about oral cancer, except that chewing tobacco greatly increased your odds of getting it, and I was not a user of tobacco products.

In the meantime I did a little bit of research on tongue cancer and I think a google search led me to the Oral Cancer Foundation website. I never knew how deadly and aggressive oral cancer could be. In my mind it was likely similar to a squamous cell carcinoma of the skin, something you did not want to let go untreated but not a huge deal. SO WRONG. After reading various folks posts on their anecdotal stories of their experience, I read some of the scientific journals and articles on Oral Squamous Cell Carcinoma.

Because of the COVID Pandemic I think it was almost a year before I had my first biopsy. The oral surgeon did not seem very concerned about the small, painless pencil eraser sized white lesion (leukoplakia is the medical term) on the right underside of my tongue about midway back to my molar teeth. He was insistent that biopsy specimen be sent to a particular oral pathology laboratory, regardless of if it was approved by my insurance company. Oh, I forgot to mention I picked this guy, because he himself was an oral cancer survivor, his jawbone cancer found on a routine dental X-Ray. I was like, I am willing to pay a few hundred dollars out of pocket if needs be to go this top notch oral pathology company. My insurance paid for it, they were a preferred provider I believe.

He was greatly surprised when it came back from the pathology lab indicating the tissues exhibited “Moderate Epithelial Dysplasia”. The oral surgeon explained that this was considered a potentially malignant disorder, and that I should follow up with an oral surgeon who specialized in cancer and potentially precancerous conditions.

That is when I think I made my first post on the patient forums of the Oral Cancer Foundations (OCF) website. I also began doing a much deeper dive into the technical papers, the various professional medical and educational links OCF had provided on their website. I discovered that I had roughly somewhere between a 1 in 10 and 1 in 4 (10 to 25%) chance of my lesion’s area tissue converting into oral squamous cell carcinoma.

I had learned from OCF articles and patients that once diagnosed with dysplasia, one should probably be seen by an oral cancer specialist yearly, for life.

My first oncology oral surgeon saw me for I think almost 2 years, before moving out of the area. OCF’s influence on me, their patient stories and educational materials, as well as my original discovering dentists very serious advising of me to stay on top of this thing worked. I had to get established with a local medical system to get a referral to see the next oncology surgeon, whom my previous doctor had recommended. I think I saw this next doctor for about 2 years. I had 2 regular appointments. Then roughly 4 years after the first biopsy about 6 months before my regular annual appointment I noticed that the area near the biopsy scar had a tiny pimple like projection that was sore.

I got on the OCF forums and mentioned that, and several of the veteran members were like “Biopsy it!”. I was about to mention it in a patient message to my doctor’s office, and it went away in a few weeks. A month later and it was back, and now steady. So I did send a picture of this tiny pimple, barely visible, to the doctor and described that the new feature was it was painful.

He ended up making an earlier appointment for me, looked at it, and could barely find it. Said he could biopsy it right then, but it did not look very concerning. I was not expecting a biopsy that day, as the last doctor required a bunch of up front paperwork and scheduling and such. He said I could probably just follow up with my regular dentist (something I was never going to do, based on what I had read on the OCF forums and website, and also thankfully three previous dental/medical professionals had instilled in my the necessity for lifetime close monitoring with someone who treats cancer daily). The other option was to come back in 3 months and decide to biopsy it then.

The day after he probed the lesion with the wooden end of a cotton swab, I was like, man, now that thing is on fire. I am definitely asking him to biopsy it Dec 2023. Again got back on the forums, and it really helped me stay insistent to pursue the re-biopsy of the area and this pimple like lesion.

The surgeon does the biopsy, was the most pain free oral/dental procedure I had ever experienced. My previous tongue biopsy not so much, the lidocaine needle for my first procedure was red hot intense pain. He joked that he kind of had to biopsy the location by feel, as it just was not readily apparent where exactly to excise, but he was fine with going ahead and doing the procedure as that was my desire.

My insistence on that biopsy was about 50% due to what I had learned from OCF and 50% from my previous doctors. Because of the extent of the pain of my first procedure I may have been unconvinced with the need to go through it again if the doctor was on the fence himself and did not think it was necessarily indicated. To me the red flag was the change, the pain and the raised nature of the bump. Happily, the second biopsy was pain-free, and I would have gladly went back to that surgeon for an annual biopsy if needed.
A couple weeks later January 2 2024 the oral surgeon calls me with the biopsy results. Microinvasive Oral Squamous Cell Carcinoma. He was very apologetic of not pushing for the biopsy as being absolutely indicated in my case. I was very appreciative of his skill, and said I understood, it was not anything you would see in a textbook as likely cancer. He said that the margins were clean, but much narrower than he would want around a nascent cancer tumor just starting. He wanted to set me up with an in house oncological ENT surgeon.

This was all at my states flagship teaching hospital, an a NCI designated Comprehensive Cancer Center. From my readings on OCF and other sources I had long since decided that if I was ever diagnosed with an actual cancer I would seek treatment at the flagship Comprehensive Cancer Center in all of New England with the strongest oral cancer program, and that I my particular tumor was some rare odd variety I’d seek treatment at the best CCC in the country, taken a trip if needed. I am young enough that I was and am willing to go to pretty large measures to get my next 3 or 4 decades of life and quality of life.

Again I credit OCF for giving me the background knowledge to know you can request such referrals, don’t be afraid to ask second opinions, don’t feel disloyal if you would like to be treated by a different organization etc.

I was surprised how happily the cancer finding oral surgeon was to set me up with a referral to this other agency. He even recommended a specific colleague of his, well regarded even at that institution.

The next ENT Oncology surgeon did a small partial glossectomy, just taking wider margins around the original excision and also scoped my throat looking for any other evidence of disease while I was under general anesthesia in a regular surgical suite at a major hospital.

Anyway OCF and the OCF forum and patients who have “been there, done that, and got the T-Shirt” are great sources of encouragement and information FROM THE PATIENTS PERSPECTIVE of what to expect, what questions to consider asking, how things progress treatment plan wise, what things mean etc.

When you are at the doctors office and he is explaining things about your cancer, in a newly diagnosed patient, it was to me, a bit like the television scenes where there is a lot of white noise in the background as the doctor is talking. My wife was there, and took copious notes, and my situation was not as shock inducing as many, but one could easily imagine if the doctor is giving a bunch of dire news about the need for a slew of aggressive treatments, that experience would be “shock and awe” to a terrible extent.

The OCF forums helped me organize my thoughts, as I kind of chronicled my experience in my entry in the “symptoms and diagnsosis” sub-forum. It was helpful for me to be able to kind of journal what happened and when, and how things developed, and to get near real time feedback from other cancer patients, again what questions to ask, different things to think about post surgery etc.

So OCF is a great resource to me in education, moral support, pre-surgery encouragement, recovery encouragement, encouragement in the progress of research and treatment methods and options.

As a co organizer of the Twin Cities Oral Cancer walk over the past 4 years we have helped raised funds through the generosity of our local sponsors and walk participants to allow The Oral Cancer Foundation to continue their work and mission to raise awareness, support patients and fund research to improve the outcomes for many patients. Creating brighter outcomes for patients and survivors.

The Oral Cancer Foundation has curated the most comprehensive websites for people who have been diagnosed with oral and oropharyngeal cancer. There is a support group with more than 13,000 people
OCF funds medical research to aid the development of methods for early discovery and disease understanding to help end late-stage diagnosis which has poor health outcomes. There are so many amazing resources for patients and their friends and family to help them with their journey. OCF promotes advocacy, research, information, support, and hope. Their support for the many walks and oral cancer screenings across the United States is unprecedented.

The Oral Cancer Foundation has supported me and other Oral Cancer patients, survivors and caregivers for over 20 years.
They provide support through their on-line forums, information through their website, and financial support to critical research.
Brian Hill and his staff are a beacon of hope in the Oral Cancer Community.

When I was diagnosed in 2006, I was certain my life would end quickly and horribly. I knew nothing about oral cancer, and was terrified.
I discovered OCF quite by accident, and I'm so grateful I did. The knowledge shared, the community, the understanding...without the OCF, I'm not sure I would have made it through

I have loved partnering with the Oral Cancer Foundation to organize an Oral Cancer Awareness Walk in Las Vegas. It is easy to see that everyone in the OCF Foundation is deeply passionate about this cause. They are an amazing team to work with and will provide constant support to assure successful events that bring us to the ultimate goal of bringing much needed awareness to Oral cancer.

The Oral Cancer Foundation helps those of us who have had or are currently battling oral cancer. The resources they provide are invaluable. They are also a force in the battle for to get dental professionals to do oral cancer screenings at every dentist visit.

I've been volunteering with this non-profit since 2011. They have been invaluable to me. The amount of vast knowledge and genuine care they have for seeking the best to do their part to eradicate this disease is like no other.

Been so happy and proud to work with OCF as an educator, advisor and a fund raiser. OCF supports patients and healthcare providers from multiple disciplines tirelessly! Oral cancer is better understood today than three, two or even just one decade ago, and OCF is bringing that message to patients and providers.

As an Oral Cancer Foundation volunteer, I've been profoundly moved by founder Brian Hill's resilience in the face of oral cancer.

Our shared mission is to make a real difference. Through fundraising and education, we aim to save lives.

With Brian's leadership, we take every step closer to changing lives. I'm honored to be part of Oral Cancer Foundation.

I lost my brother to Oral Cancer and have been working with OCF to raise awareness. They helped me organize a walk in LI, helped support the journey throughout and the monies are being used to bring awareness, education and research. Great organization with an amazing team lead by Brian Hill.

Being a patient who’s been through treatments, I believe in their philosophy and strides as being a necessity to all. It’s important we have organizations as such.

Husband diagnosed stage IV squamous cell 2003. The information and support we received from OCF was life changing. He is still around today thanks to this organisation.

I originally found OCF on the internet, with a very deep and informative web site. I had been diagnosed with tongue cancer, and was doing what every scared patient does,, checking Dr. Google. Which of course is a mistake when you don’t have a basis for even starting to understand cancer or the sciences of treatment. I reached out to OCF, and with in a day I got an email with a support person offering to be my co traveler over the next few months of treatments and a million questions.

I agreed to start the dialog by email, my OCF partner in this had lost his voice over the years of survival from his treatments, and phone calls were not possible. I later found out that my cancer question and advice guide was Brian Hill, the founder of OCF. At what other non profit could you get this? With a deep 25 year background working with researchers, the NCI, lecturing on oral cancer at universities, and literally hundreds of patients personally helped, I had hit the jackpot. .I’m guessing that over the next 4 months we corresponded 30 times. The decision help, recommendations, workaround ideas, and explanations I received were invaluable.. I’m now a small regular donor to OCF, it’s the least I can do for this very personal attention I received. OCF is different. Its staff are different. And the world is a better place with it in it.

I became familiar with the OCF the hard way when I was diagnosed with Stage IV A squamous cell carcinoma in my lymph nodes in 2012. The support and the information that was provided by the foundation and its staff was a big part of my winning the battle to beat the beast that is Oral Cancer.
Along with my faith in God, the love of my family and friends, and the experience of my doctors, the stories shared by other survivors prepared me for the fight and gave me the hope and confidence to get through it. I am one of the lucky ones and I support everything the OCF does to continue to raise awareness and educate the public about this horrific disease.

Discovering you have cancer is frightening. You want answers and think about how this occurred and what can I do to get through this life event. There is a lot of misinformation on the web that can add to one's stress. The Oral Cancer Foundation has a wealth of vetted, science backed information that you can trust to be factual and relevant. The support forum is an incredible resource as well to help you feel that you are not alone on this journey. There is always someone there to answer your questions and guide you with helpful recommendations. I am grateful for this foundation and everything they have done to support research that will hopefully put an end to this cancer someday.

Great site for oral malignancy support and information
highly recommend for those with unfortunate diseases

I started volunteering with the Oral Cancer Foundation two years ago. I help organize the 5k in the Twin Cities. I became involved with this organization because I was diagnosed with stage 3 tongue cancer in August of 2018. This is a Foundation I will be apart of for years to come!

I met Oral Cancer Survivor and Founder of the Oral Cancer Foundation Brian Hill via the phone sometime around 2000. This call ended up being the start of a great business and friendship. I have been with the foundation ever since that initial interaction. The dedication to patient support is unmatched by any other charity organization I have ever dealt with. The patient forum and the published research are a sign of that dedication. I am proud to be part of the organization.

I learned about the Oral Cancer Foundation when I went to Kirkland, WA to help my wife, who is an 8 year survivor, help set up for Washington State Walk for Awareness. She is very passionate about prevention and early detection of Oral Cancer, since her cancer was caught and was treatable with surgery only. We are very grateful, and helping the OFC spread the word is always time well spent.

This organization is so helpful and takes time to answer questions for anyone who reaches out. Brian goes above and beyond to assist everyone and he is very very knowledgeable . He and the organization are dedicated to people in need of help. God bless you all!

This organization is a unique wonderful entity in the realm of oral, head and neck cancers. That they get so little notice for the major impact they have had in the world of advocacy work over more than two decades surprises me. As a professional who works in public health advocacy, I have personally engaged with them, and often been allied to OCF in my working life.

They have been a constant thoughtful, strategic, and tactical voice, one whose tenacity has impacted policy and procedure changes that will directly impact medicines direction inside agencies at the National Institutes of Health like the NIDCR and NCI. Their public health policy advocacy and lobbying the Centers for Disease Control, particularly during a long three year effort that culminated in allowing boys to be vaccinated to protect them from HPV alone will change the male oropharynx cancer incidence rate over the next generation. OCF’s work with others to pass the first legislation in 2009 with the coalition put together by Senator Ted Kennedy’s team that gave the FDA regulatory control over the Tobacco Industry, was a landmark they were part of. Even this week as I write this, their long-term efforts to influence tobacco policy with other partners working on tobacco harm reduction ideas and federal policy is yielding changes that will curb the addictive amount of nicotine in tobacco products.

The posts I read here mostly speak to their patent centric efforts. But people need to realize that their interests, efforts and impact are far broader. That they see the big picture and strategically think of long-term impact in their niche of public health, is not something I see in small charities. They have vision, coupled with achievable goals. This organization deserves support. It deserves far more visibility for its work than it gets, but it appears to put little money or effort into talking about its many accomplishments keeping its small staff focused on the work. I hope that will not hamper its future. It deserves to financially survive and so it can not just continue, but expand its impact. I came here today to broaden donors view of what they should expect from a charity. This one is the exemplar.

OCF makes a difference by educating about self-discovery, working together with hygienists to diagnosed the disease in early stages, advocating the HPV vaccination for boys, too; Unfortunately, cancer centers are starting to say to themselves, 'Why should we host a walk for awareness and let OCF benefit with the money. We could do our own walk and fund our own programs." The problem there is that money will go to their own labs, and maybe help with research in the long run, but will they advocate for vaccination? or educate the public, or support survivors and caregivers....no. So join me in supporting this worthy organization. Host a walk in your area.

The OCF and Brian Hill provide the bridge to hope with dedicated caring people, information, resources and connections to much needed support.
With individuals often diagnosed in the 50+ age group and the large aging baby boomer population this is a disease this age group needs to be aware for oral exams as well as knowing where to go for support. OCF helps develop courage, and resilience in going from initial diagnostic stages to treatment to recovery.
I reached out to OCF to learn more about patient options for follow up where an early screening light indicated a suspicious area, to a visit to an oral surgeon who cannot biopsy it without seeing it with the naked eye. Brian Hill provided info on screening lights, follow up options and more. I am appreciative of his knowledge, experience and his dedicated time and energy to respond to my inquiry as well as the OCF which he founded.

After having Oral Cancer Diagnosis and Surgery the past few years have been a struggle receiving proper Nutrition. The Oral
Cancer Foundation is aware that a patient’s Journey doesn’t end overnight. I am forever grateful for the life saving Surgery I received but my Jaw had to be replaced which also meant the loss of my bottom teeth and a portion of my tongue. I happened to see some
Information about a program the foundation has with Vitamix. The Staff was kind and helpful. I just received my Blender and can’t wait to start using it! I am giving this non-profit
rating 5 Stars!!!

This is by far the most attentive and resourceful non-profit organization. No words can express my thanks and gratitude.

Brian is absolutely the gem in this ever increasingly apathetic world. He genuinely cares and makes time to listen to each story in details and offers medically accurate information.

Oral cancer is not a topic most medical media pay attention to on a frequent basis. Brian has created an outlet for oral cancer awareness, treatment and support.

The Oral Cancer Foundation is the very best organization dedicated to helping patients and caregivers thru info and support for their oral cancer. When someone is first diagnosed with oral cancer it can be a lonely and terrifying time! Unfortunately its very common for newly diagnosed patients to know little if anything about oral cancer. The absence of info for one patient 20 some years ago is how OCF was created. Its amazing what Brian Hill along with his wife Ingrid created with a small nonprofit organization that filled the void with page after page of important facts every oral cancer patient should know. The Oral Cancer Foundation has grown significantly since it started, helping thousands of people worldwide each year.


Patients and caregivers who are trying to learn about their illness, the Oral Cancer Foundation has websites that cover anything and everything imaginable relating to oral cancer. The Oral Cancer Foundations online public forum is where patients and caregivers pass along their experiences with each other while supporting those who need a hand. Its one of a kind place that is monitored to ensure only correct medical info is posted without an influence from advertisers. Patients and caregivers quickly bond, many becoming life long friends while learning about oral cancer and things to help get thru the barbaric treatments.

Im a 3 time oral cancer survivor who joined soon after being originally diagnosed in 2007. I cant say enough about all the wonderful things and people that have touched my life and heart with their selflessness, empathy, knowledge and encouragement. I continue to help new forum members who are just starting out and strive to emulate the founders positive example when helping others.

In March '07 I was diagnosed with Squamous Cell Cancer of the tongue. I was not in any risk factor group and had nowhere to turn for information. My (then) doctor told me NOT to 'go on the Internet'. I did the opposite and found the Oral Cancer Foundation. Thru the steady guidance of OCF during my cancer, treatments, surgeries, and subsequent spread (18 months later) to lymph nodes resulting in more surgery and treatment, I am here and 11 years cancer-free. OCF has been a guiding light spreading awareness and information about a little known deadly cancer. When I was diagnosed the connection to HPV was not known outside of the cancer research world. OCF took the lead in spreading the word about a vaccine that could protect against the agony, disfigurement, and loss of life that can be prevented with early detection. I applaud the OCF for the work it continues as the world slowly recovers from a pandemic which has shifted focus away from cancer. BRAVO OCF!!! ,,, and thank you.

I’ve lost family members to cancer. Recently I lost a close friend to oral cancer. When you even hear the word cancer it’s a frightening thing. At times waves of fear wash over family members along with the people that are in directly battling cancer. Thanks to the OCF we have something else we can count on. OCF offers hope to so many people.
As it has s said in the Shawshank Redemption
Hope is a good thing,
maybe the best of things,
and no good thing ever dies.
MP Buxton

I’ve been a dental hygienist for the past 23 years and have a the honor of volunteering for this amazing foundation. It has been extremely helpful not only to me as a dental professional but more importantly to my patients. The OFC has provided much needed support and services for patients in need. They continue to educate, advocate and stress the need for early detection which is key in fighting this disease. The OCF is an extreme asset to the dental professionals and invaluable for patients and their caregivers.

OCF is a phenomenal organization, filled with knowledgable and compassionate people with a shared mission to educate and advocate. I found them when looking for support after my mother died from oral cancer, and was so impressed that I joined as a volunteer to help coordinate the local awareness walks for several years. I will always hold this organization close to my heart, and will continue to direct oral cancer patients and their families to the website for accurate up to date information as well as wrap around support.

This is an organization that has great impact in patients lives. Their patient centric approach engages with individuals right from early discovery of the cancer, through treatment choices, and into survivorship. They are active in every facet of oral cancers from tobacco cessation, to HPV vaccination as preventative measures, to funding new research into earlier detection methods, and clinical trials for improved treatments that are less damaging to patients. They pioneered survivor to patient peer to peer support online two decades ago. I have friends who have been positively impacted by them directly and have seen the quality of the organization through those relationships.

I began working with The Oral Cancer Foundation as an event coordinator for the Boston Walk/Run in 2007. The members of this organization were extremely instrumental in helping the event get off the ground in order to raise awareness and much needed funds for oral cancer research and for OCF's valuable resources. As a dental professional, I have found OCF to be a priceless resource for my patients. Their website has been a useful tool for patients I have referred who are in need of the invaluable information it contains. Not only has it helped my patients understand what they or their loved ones are going through, but it's been a great resource for those in need of additional support through their patient forum. I find OCF to be a tremendous asset to oral cancer patients, their caregivers and dental professionals alike.

The Oral Cancer Foundation truly lives a mission of being a science led organization that looks to change the future in early identification, advocacy, and treatment in this disease process. With this in the forefront, those who organize events are empathetic and energized around educating those around them. Bringing dental hygienists and dentists to their events to perform visual and tactile oral cancer screenings to event participants is what brings life into the work that this critical foundation does. I could not think of a better organization and group of individuals that I have kept in contact now going on 10+ years!

OCF has always been available to answer questions about treatment and complications of treatment for those who have decisions to make or problems to solve. I can call weekends or holidays and have always gotten a prompt call back from a real person. That is uncommon in my experience. This is a nonprofit that really made a difference in my cancer experience

I have been working with the Oral Cancer Foundation since 2018 when I took over as Race Coordinator for the DMV (DC/MD/VA) OCF 5k to raise both awareness and funds for this important cause/organization. Their team was instrumental in helping me stay organized and answering questions regarding logistics, vendors, deadlines and needs to make it as successful as possible. Oral cancer screenings are so important in our dental community (I work for an oral surgery practice) and we always encourage all of our colleagues to perform them on every patient during their semi annual cleanings. It is not uncommon for our practice to see pathology cases so we always speak up regarding education and early detection. We are so fortunate to work with Brian, Ingrid and their entire team to join in the collective fight to raise awareness and find a cure.

The Oral Cancer Foundation continues to support and share stories of those who have bee diagnosed with oral, head and neck cancers. Patients are a number one priority for OCF. The website is full of information for almost every question one may have. OCF also provides a safe space in the form of a specialized support forum for patients and caregivers to ask questions and come together as a community. Dedicated members of the forum as well as the founders are readily available to assist in any way they can.

I interned for this organization for several years; everyone I worked with and for was excellent and passionate about their work. I was also able to attend several events with the OCF community and was always impressed by the levels of respect and care that I witnessed. This organization tackles a very sensitive and often scary disease; the sense of OCF's comradery and support was always obvious. The people who work here care deeply about everyone affected by this disease. Would recommend.

I am Chief Technology Officer for a medical device company that sells devices to oral healthcare providers to help them find oral cancer hopefully in early stages when the prognosis for patients is so much better. As part of our ongoing efforts our company has interacted with the Oral Cancer Foundation and its founder, Brian Hill, on many occasions over the years.
Brian and his OCF organization have had, in my opinion, a profound effect on the dialogue about the importance of oral cancer screening and the critical role that front line health care providers such as dentists and hygienists have in this process. I cannot speak highly enough of the job that the OCF has done in this regard. With limited resources, the OCF has reached far and wide - from the American Dental Association to bodies such as the American Academies of Oral Pathology and Oral Medicine, to university faculties doing core clinical research around North America, to the FDA and also to about every technology company in the field of oral heath and oral cancer. It is nothing short of astounding. Brian and the OCF have worked tirelessly to promote the importance of oral cancer screening in preserving health and saving lives. The OCF was involved in early stages to support clinical research that helped establish the link with oropharyngeal cancer of the strain of HPV principally responsible for cervical cancer. Not only that, but the organization has also been involved in arguing for the importance of HPV vaccines in battling oropharyngeal cancer and for its deployment in the population to both males and females. And I haven't even mentioned the OCF website, widely regarded around North America as the best web resource there is on oral cancer.
My personal interactions with the OCF have mostly concerned the outreach of the OCF into high-tech companies, a capacity in which Brian and the OCF are uncompromising in their efforts to encourage those in industry to do what is right and speak the truth about not only what their products do but what they don't do. It is my company's privilege to have worked with the OCF over the years and to have helped in what ways we could to support the OCF and its mission.

The Oral Cancer Foundation is a truly special non-profit. I came to know about OCF when working for a manufacturer of the VELscope oral cancer screening system. OCF was tremendously helpful in educating us about the nature of the disease, the many challenges faced by oral cancer patients, the needs of the dental practices that use our system on their patients, and what we could do to ensure that our system played as great a role as possible in helping dentists discover oral cancer or pre-cancer in as many patients as possible. OCF never requested or accepted a penny of payment for the valuable services they provided. Moreover, over the years I came to see and appreciate the outstanding impact OCF on oral cancer patients and caregivers around the world. In terms of both effectiveness and ethics, OCF is truly the model that every non-profit should strive to emulate.

When my husband was diagnosed with stage 4 SCC in 1997 there wasn't an oral/head and neck website, or any information for that matter, available to help guide us through his treatment, or answer the myriad of questions that we both had. Fortunately, we came through the process and learned a lot about this disease. Wanting to help others on their path, my husband formed the Oral Cancer Foundation in 1999. I am happy to report that over the last couple of decades OCF has helped tens of thousands of people directly; not to mention the millions who have visited the website for information, through the process, whether they are patient and/or caregiver. This valuable resource has filled a vacuum that existed, helping individuals who now have guidance and support to navigate their way through this tough disease.

Separate from its patient centric value, OCF is now a financial sponsor of peer reviewed scientists and their publications, made possible by many generous donors over the last couple of decades of its life. It's certainly a place where the things that donors wish to see in a charity they support can be found. Not just marketing rhetoric, or feel good euphemisms, but tangible measurable end result metrics.

The Oral Cancer Foundation is an outstanding organization that is laser focused on it's mission to combat oral cancers. They were early and very vocal supporters of the HPV vaccine, which can actually prevent a significant number of these cancers from even occurring. Cancer prevention always beats cancer treatment! One of the greatest accomplishments of the Foundation was their efforts to get the HPV vaccine recommended by the FDA for boys in addition to girls. This was critically important to helping break the chains of transmission along with educating the public on the types of cancer caused by this virus. They follow research on new treatments closely, which is important because the most commonly used treatments for these cancers are so incredibly debilitating to patients. And not only do they follow the research, they also support it financially and provide suggestions for future directions of research via their work with granting agencies. They are also involved with networks of dentist in terms of screening people for signs of oral cancer. This is important because most people visit their dentists more often than their doctors, and finding these cancers early is a key to survival. Another way they approach ending oral cancers is by advocating for smoking curtailment efforts, so that young people don't go down that path. Their website offers up a strong support program for oral cancer patients like me, connecting people who are newly diagnosed with the disease to those who have survived it. This charity puts the patients first and has an oversized influence for a relatively small charity. I am happy to support them in their efforts.

The passionate team at the Oral Cancer Foundation does amazing work to improve prevention, early diagnosis and treatments options for oral cancers.

This foundation has been my go to for questions after my diagnosis. Good to have a place like this to answer questions anytime of the day.

This is a great organization. They are an amazing group full of knowledgeable people. Their generosity and commitment is unbeatable.

The Oral Cancer Foundation helps so many people day in and day out. They are an amazing resource for those who need help dealing with this illness.

I amassed a lot of knowledge as a caregiver from this forum. I like the fact that I am able to interact with forum members not only in North America, but in Australia, the U.K. and India. IIts reach is worldwide. The members are sympathetic, empathetic and do their best to support each other . Over the years, thousands have been helped.

This small organizations dedication to always provide facts that are science based is commendable.  I highly recommend the Oral Cancer Foundation to patients and caregivers who are dealing with oral cancer diagnosis, treatments, and recovery.  Other organizations should strive to emulate this outstanding organization in every way.  The Oral Cancer Foundation operates on a tight budget to make the most of every donation received.  Please consider giving this organization your donation. 

THE ORAL CANCER FOUNDATION IS THE VERY BEST NONPROFIT IN THE US!!!!  They have helped me tremendously with so many things my medical team hadnt told me.  I always learn something new every time I go onto their website.  The Oral Cancer Foundation is the best of the best, they deserve 10 stars!!! 

My husband fought this disease for four years. During that time we found the most up to date and reliable information at this charity. People in the support group helped us almost daily, through all the ups and downs of his battle. Even the founder of OCF spent hours with us on the phone over many conversations, helping us understand treatment options, and when the conventional ideas did not resolve things, new ideas in immunotherapy that were only in clinical trials. He helped us get enrolled in one. For almost a year things looked bright and the disease seemed to retreat. But ultimately it was stronger than any treatment and this year we lost him. While our story is not the bright cheery post that I read here, I came to say that OCF stayed with us, helped us understand, helped us find new ideas to try, and ultimately mourned with us when it was over. They never asked for anything from us, they were just always there when we needed them, even on holidays when things turned suddenly south. I can’t donate to them, we are not financially capable, but in 2020 I will work with them to set up a fundraising walk in my hometown to raise money. To memorialize my husband, and to raise funds for those who were there for us. If you can donate, this charity is the real deal. Not some giant in size, but with a giants heart.

I have been part of this foundation's work for many years. I have watched them grow from a seed of an idea, to a highly impactful and well run national organization. After having this cancer and surviving; and later thriving, I wanted to give something back. The place to do that was obvious. During my journey this organization had a support group online that was the only thing like it, not just in oral cancer but in cancer in general, they were way ahead of the Internet curve. I found people like me there, and the peer to peer conversations helped me see what was ahead of me on my path. But the richness of the website content, and the details which it went into, also gave me the knowledge I needed to help make good informed decisions. They have been at the forefront of the HPV and oropharyngeal cancer issue since the link between the two was discovered, and have financially supported core researchers in this area and disseminated tons of information about it in the public arena. An educated public can find ways to have their children side step having this disease impact them. Bottom line there isn't another organization that reaches this bar of accomplishments in the head and neck / oral cancer world. I will continue to attend their walks, advocate for them in my industry (dentistry) help with their support group, and make them my charity of choice for donations, as they are a life changing organization.

I am a long-term survivor of a stage four oral cancer. I have been engaged with OCF since my early days right after treatments when I was having difficulty with swallowing speaking and all the aftereffects that those who have been radiated know about. The people, web site, and support group at OCF were instrumental in keeping me informed, and understanding work arounds for some of my most difficult problems. I was even able to call the founder of OCF on a personal line and discuss issue with him as he has been out of the lecture circuit talking about the disease and is highly informed and connected to others in the oral cancer world that might offer me assistance. Ten years have elapsed since those days. Today I have new problems that many of my doctors do not know how to deal with, all related to my high dose radiation treatments. I again turned to OCF, and again found answers and support. OCF has now been part of my life for a decade and a half when I needed them. They have always come through for me with support and answers, and importantly options that help me make better informed decisions. OCF is not a large entity, and it is significantly underfunded considering the many important things they are engaged in. I used to think that bigger was better. But this organization is now the destination of my donations because they get things in the oral cancer world done, when others with fancy websites have little to show for accomplishments in the oral cancer world. OCF is a gift. I urge others to please donate to them, they deserve to be around into the future.

I am a 15 year survivor that is having significant complications from my radiation treatments. No other organization that I have contacted understood the nature of these issues, baro reflex dysfunction, neurological issues and more. Here they get me, they have work arounds to help me, they have spent countless hours on the phone with me, and helped me understand what is happening to my life. Bigger charities had no clue what to do with me, and I rapidly learned that they only are interested in people with one of the big four cancers. Oral cancer without OCF would be an orphan disease when it comes to patient support. This is were my donations now go. They have earned every dollar that I have given them.

As a caregiver, most people and organizations do not understand that when someone gets this cancer , the whole family gets it. We have been devastated by my husbands disease, the impact on our family financially, and my personal emotional state as well. OCF understood that, they have not only helped my husband navigate through the maze of treatment options, find workarounds for issues , and ultimately get into an institution that was doing immunotherapy, when his disease did not respond well to treatments, but they have supported me separately through my issues as well. No other organization that we contacted got this. They have spent hours and hours with both of us on the phone, the support group has also helped as has the many pages of useful information on their web site. I don't know what we would have done without them. We cannot afford to donate to them right now but when our lives stabilize in the future we will. We encourage others to look at this small charity as THE place to give your gifts, they are so deserving of your support and deserve also to survive in a very competitive world of non profit charities.

The Oral Cancer Foundation is the very best charitable organization. If it wasnt for them I dont know how I would have gotten thru the harshest treatments to become a cancer-free survivor. Everyone there is always willing to help me and others with their own knowledge with so many tips all of which my medical team hadnt mentioned .

This group deserves 10 stars.

The Oral Cancer Foundation is small but mighty. Working firsthand with other volunteers, it is a group like no other. Motivated and passionate about helping those fighting oral cancer - survivors, family members, and friends alike. The walks that take place around the country are their own unique experience, dedicated to spreading awareness and fundraising for this important cause. A large percentage of donations received are in turn given back to relevant cutting-edge research, this is one of the top reasons I volunteer and donate to this cause. I wish more people knew about OCF, and the information available on the OCF website (oralcancer.org).

My husband received the news that he had oral cancer in July. I spent 17 yrs working/teaching at a dental school in the midwest but never dreamed oral cancer would be a part of my life. Once he got the diagnosis, I started scouring the internet to learn more. I came across the OCF website and quickly joined as I was able to share my frustrations and questions as a caregiver with survivors and receive support plus information. I call this group my lifeline as they have walked through this process with me.

The Oral Cancer Foundation is AWESOME! I dont know what I would have done without their help when my father was diagnosed with cancer in the base of his tongue. Thank you to everyone at The Oral Cancer Foundation for helping me to get my father thru some of the darkest days of his life.

For anyone undergoing the difficult days of surviving oral cancer, or if you are a caregiver to someone diagnosed with oral cancer, this site is unlike any other. It is the very best place to be to get all the latest, best, and most accurate information available. When my son Paul was diagnosed with Oral Cancer, he had a large lump under his tongue, and I was a basket case of worry and nerves. One day while waiting in the hospital waiting room as he was called in to get his radiation treatment, a young man sitting nearby came over to me and said "Go to the Oral Cancer Foundation's web site". He then left when he was called in for his Radiation treatment. He was he angel that led me to the Oral Cancer Foundation where I found so many wonderful, knowledgeable, and compassionate people. I was on the site during those early days of my son's recovery several times a day, and no matter what time of day or night it was, there was always someone ready to help with information and ideas and suggestions on how to help my son to survive what he was going through. There will never be words enough to describe how grateful I am to the founder, Brian Hill, and to all of the people at the Oral Cancer Foundation for my son's survival from this horrible disease. My son, Paul has been cancer-free since 12/19/06.

As a dental hygienist of 24 years, raising awareness and educating about oral cancer and HPV is my passion and mission. I joined as a regional coordinator with OCF 8 years ago. OCF provides current vetted and relevant research and information for dental professionals, enabling us to better serve our patients.

My wife who has leukoplakia was getting different opinions from specialists causing
us confusion and anxiety.We called OCFin hopes of finding an expert.We spoke to Brian Hill
the founder of OCF and explained the situation to him. We found Brian to be very knowledgeable pleasant and compassionate. He spent a large amount of time and effort answering all our questions for us to make a clear intelligent decision.
Dear Brian thank you and all the people at OCF for being there to help all in need and for you being a kind and wonderful person.
Harvey and Donna

The Oral Cancer Foundation is much more than a spectacular non-profit, but also a home and safe haven to those who have been effected by this disease. Extensive information coupled with a huge online support forum makes this foundation so special and valuable in the cancer community.
OCF's incredible work in sponsoring research, advocacy, public outreach, campaigns, and awareness events set this charity at an enviable and honorable standard. Everyone involved in this foundation from the Executive Director to event volunteers has passion for the cause, all working together to change the course of oral cancer.
OCF is a well rounded and incredible non-profit. I am so privileged to be a part of this dedicated foundation.

This organization’s website is the best source of information for patients and caregivers that are going through diagnosis, treatment and the post treatment for oral cancer. In addition, support and answers to questions can be obtained through the use of the extensive online support forum.

My husband was diagnosed 3 times, with different oral cancers, first in 2002, another a couple years later, and a cancer on his lip in 2005. They were all undifferentiated, and contained, so he never had radiation or chemo, but instead, extensive surgeries removing a few teeth, jaw shaving, tissue, and some lymph nodes (that were not cancerous). He has had good check-ups since then. I am writing because he asked me to. The Oral Cancer Foundation and its forum were a God-send, with some of the most helpful, kind people you could ever hope for. It made a world of difference to talk to people who had experience with this disease, who could offer advice and comfort at a time when it was badly needed. I wish I could give the foundation more than 5 stars, because they truly have helped more people thru probably the worst times of their lives.

When I was going through Oral cancer, the Oral Cancer Foundation was a big help to me. I am currently a survivor of 8 years. I know OCF will be there for me if and when I ever needed anything again.

The Oral Cancer Foundation is what pulled me thru my battle with oral cancer several years ago. I dont know where I'd be today without their guidance. Oral cancer is not a widely known disease. I never heard of it before I was diagnosed. The compassionate support members give other can not be replicated. This website helps oral cancer patients and caregivers from all over the world. I wish there were more websites that modeled this great organization. Two thumbs up!!!

The Oral Cancer Foundation is the very BEST small nonprofit organization!!! The OCF online patient support group helps patients and caregivers all over the world with up to date and correct medical info and support. This nonprofit establishment also helps fund many cutting edge research projects. For example, some are dedicated to furthering knowledge of HPV which is the fastest growing segment of newly diagnosed oral cancer patients. The Oral Cancer Foundation has created alliances with dental offices across the US to do thousands of free oral cancer screenings every April for Oral Cancer Awareness Month. This helps to find oral cancer early when its the easiest to treat.

My husband was diagnosed with tongue cancer in 2007. I literally don't know how we would have made it without the oral cancer foundation. We were lost as to how to proceed and the oral cancer foundation gave us the tools to navigate the choice of treatment. After treatment we turned to OCF for advice on nutrition and issues with swallowing and feeding. Because of radiation, my husband had to have his jaw replaced last year. The advice of OCF was instrumental in both of us surviving both physically and emotionally. I can't say enough good things about these incredible people. They deserve 50 stars as far as I'm concerned.
Mary and John McCloskey

I was diagnosed with an HPV+ oral cancer that had to metastasized to one lymph node in March 2017. The Oral Cancer Foundation provides an outstanding *moderated* board by other cancer survivors.

Using the board I:
- Selected a certified cancer center 4 miles from my house by late March 2017
- Chose surgery + radiation rather than radiation + chemo by May 2017
- Learned "best known methods" from previous patients - I did NOT need a feeding tube, I ate solid foods until my 6th week of radiation, and I did not have significant weight loss.
- I had very little skin damage compared to most patients (for example, my skin did not peel despite 30 radiation treatments.)
- Followed my speech and swallowing exercises to the letter and did not lose any range in how far I could open my mouth and had no loss of function in speaking.
- Was able to get feedback on questions as they occurred.
- Was given realistic expectations from former patients (e.g. taste loss, salivary gland function) that was glossed over by the doctors.

I highly recommend the Oral Cancer Foundation for anyone with oral cancer and their support.

The best thing about the non-profit is that they provide a moderated forum. This prevents information that is inaccurate or misleading from confusing you at a very difficult and confusing time at your life. OCF is the place I could count on to get quick and accurate answers to our questions during and after treatment.

I found OCF in 2007 when I was diagnosed with cancer. They provided much needed information and additional support that was needed.OCF goes" above and beyond" what most other cancer related non-profits do for the cause. You can sign n 24 hrs a day and find answers and support from those who have been thru the same or similar treatment. OCF is there for anyone needing advice and support regardless of income or status.

This is a model non-profit organisation which helps oral cancer patients, survivors and caregivers throughout the United States and in the wider world. It has helped me through two occurrences of oral cancer and I hold the managers and moderators in the highest esteem. They give information but also the emotional support that is necessary for us when we go through this devastating disease.

I found the Oral Cancer Foundation near the end of my Husbands radiation/chemo treatment for his Base of Tongue cancer. How I wish I had found the site earlier. Such a wealth of Information .
The Patient Forum was a god send. Such supportive and helpful advice on all manner of treatment and its side effects. I have given OCF's details to the ENT department at our hospital in New Zealand. I spoke to the Head &Neck cancer Nurse specialist too and really recommended that she look at OCF's site and that she pass on the details to all new Head&Neck cancer patients. The information is accurate and gives a great overview of treatment and what to expect. I found the support of other patients and their Caregivers incredibly helpful and supportive. This fabulous group got me through a recurrence too.
When dealing with a cancer, online support and advice is what you need. I found it at the Oral Cancer Foundation .

The OCF is THE online resource for head and neck cancers. I found them during recovery after surgery and radiation, joined immediately and was instantly embraced into a caring and helpful family. There is a wealth of information there and I know they sponsor research and work with patient outreach all over the country and even abroad. But what really sets the foundation apart are the people. I urge any H&N cancer sufferers and their loved ones to make use of this amazing place.

I found the Oral Cancer Foundation’s online forum while going through treatment. The wealth of information and support that is provided is priceless. The foundation’s mission is designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities. Coping with oral cancer can be complex. Not only is the patient dealing with a life-threatening disease, but also with changes in physical appearance, speech, the ability to swallow and eat, smell and taste. I firmly believe in spreading awareness and getting screened because getting screened can literally be the difference between life and death. I don't know what I would have done without OCF.

The Oral Cancer Foundation has helped me and my family with my fathers tongue cancer. The online message board has been a huge help in answering our questions and helping us to get my father thru some very dark times. I cant thank the dedicated volunteers enough for all the help they have given us this year. Other charities should be more like The Oral Cancer Foundation. They are the best of the best!!!

OCF has been a life saver in helping me to get thru my fight with oral cancer. I cant say enough positive things about this small organization. They may be small but OCF helps hundreds of people from all over the world every week.

After being diagnosed with T4 tonsil cancer I discovered OCF website. Sharing experiences with others who are at different stages of the journey, from diagnoses onwards and everything that involves, has been a huge factor towards helping me deal with my own battle. Now that I am in remission and doing well, I want to give the same help and support that people, who use this site have given me. This forum is amazing and I cannot recommend it enough to all people whose life changes overnight by the C word and their families.

Through this organization I receive much needed emotional support as I live through the oral cancer journey. Also it has given me factual information about my condition and helped me view my expectations realistically. We have a bond.

As soon as I was diagnosed on June 5, 2015 I hit the internet to learn all I can about my type of cancer and what I was potentially in for. The message board on this site and all of the literature has been a life saver and sanity saver! I am currently on there starting a new thread as I begin to prepare for a new phase of my treatment.

I was diagnosed with tongue cancer earlier this year. Finding he Oral Cancer Foundation has been a wonderful resource and support for me. I cannot imagine having to go through this ordeal without this foundation!

My family is very grateful for the Oral Cancer Foundation's work in supporting patients and their families as they navigate diagnosis, treatment, and survival, and for keeping the public abreast of research and and relevant news. The support forum has been particularly helpful. My mother was diagnosed with advanced squamous cell carcinoma of the tongue, and through OCF, we have been able to research clinical trials, access other resources, and communicate with survivors and caregivers farther along in the process.

There are not all that many places to share the experience of having a portion of your tongue removed. Many less to share that experience with people who provide the support and encouragement that I found at the OCF. It is loaded with information, compassion and it's done with sincerity from people who have been there. It provided me with somewhere to go and people to turn to in some very dark and scary times. I will be sticking around to try to contribute in whatever way I can. I love the OCF!

My mom became a member of the OCF after her first battle with oral cancer. During my mom's nine year battle the OCF provided support, resources and friends that helped her endure. Unfortunately, my mom lost her battle with oral cancer in 2011. The OCF continues to be an amazing outlet for me to help spread awareness and promote oral cancer screenings. I am so grateful for the OCF and everyone associated with this foundation!

The Oral Cancer Foundation (OCF) is the best source of information and support for those impacted by oral cancer. While some think this is a rare cancer, oral cancers will be newly diagnosed in about 115 new individuals each day in the US alone, and one person dies from oral cancer every hour of every day. Approximately 43,250 people in the US will be newly diagnosed with oral cancer in 2014. Finding information and support for those newly diagnosed is difficult since this isn’t one of the “popular” cancers. The OCF website and support forum fills that gap. OCF provides reliable, accurate and updated information on oral cancer via their website main pages or through the on-line support group. The on-line support group is available 24x7 and gives you the ability to connect with others that have gone through what you are going through. Now I did not feel so alone!

I found the Oral Cancer Foundation when I was a terrified, newly diagnosed patient. The community forum and educational resources were invaluable to me then and through my treatment and recovery. As a three year survivor, I still often return to the community forum to both receive and offer support and information. I am so grateful to this organization.

When you are diagnosed with cancer, there are simultaneously dozens of places to get advice and no places at all. What that means is it is easy to become overwhelmed with information and to almost drown in it. Cancer is scary - so very scary - and having a place to go, a place where people have been through what you're going through, makes an enormous difference.

The people at the OCF foundation are in treatment, survivors of treatment, caregivers to those with this horrible disease and yes, are sometimes those left behind. They are a wealth of knowledge and support because they have lived it. When I was diagnosed I nearly drowned in statistics, information and general fear. These people helped me sort it out. They continued their support by answering questions and providing encouragement throughout my treatment and have done so whilst I recover.

Best of all, I know that if I post today, two months since I last posted, I would be greeted warmly and my questions or concerns would be answered promptly.

This is a great site -- one of the most important in the world if you have head or neck cancer, and one of the best in the world for those looking for love, support and strength through one of the toughest battles in life.

When we are first diagnosed with cancer we are all lost and terrified. That is pretty much true for all of us. What we need is to find a group and find it quickly that shows us and convinces us our cancer is not a death warrant, that it is survivable and thrive-able. OCF did that for me. Their members and staff are all supportive, knowledgeable and willing to share. Because they are a well moderated forum they don't have or tolerate misbehavior on their forums.

Like others have said, I give them 5 stars only because I can't give them 10.

When I was diagnosed with Tongue Cancer I discovered this organization almost immediately. I utilized the forums and the literature they had to manage my treatment and become a good patient advocate. This organization doesn't stop at just the diagnosis and treatment phase but continues to long term because survivors need information to manage long term effects of the treatment.

I am giving OCF 5 stars because I can't give it 10. This wonderful organisation provides imperative support to oral cancers patients and their families, through the patient forum and the authoritative newsfeed. The administrators are cancer survivors who are passionate educators and supporters of others, valuing scientific veracity and honesty in their provision of information. I found this particularly important as cancer can make patients and families feel utterly powerless, whereas knowledge from a trusted source is empowering. I know, as does every forum member that no question is too trivial or too personal or too embarrassing or has been asked too many times, such is the culture of OCF. Technically, the forum is user friendly, being easy to navigate and intuitive.

When my brother was diagnosed with Stage IV cancer our family was devastated, with no clue as to what sort of questions to even ask his treating doctors. I am so thankful that I happened upon the OCF in my search for support and information on the Internet.

When my husband was going through treatment for oral cancer, I spent many nights searching for answers to his condition. I found the Oral Cancer Foundation one night and felt as if I had come home. Here was an organization dedicated to oral cancer and I immediately connected with others going through similar issues. I am so grateful to the OCF for the information,, education and research they have sponsored. The Forum is a group of patients and caregivers available at any time to help when the going gets tough. I have made friends all over the world who are with me every step of the way. I can't thank Brian Hill and his staff enough for the support I have received. It has helped me get through very difficult times. Today, I give back by donating to this worthy organization in the hopes that I might help someone else as I have been helped.

I've been active on the OCF patient/caregiver forums since my husband was diagnosed with very-early-stage oral cancer in 2006. I was welcomed into a club we never sought to join and received invaluable advice. Over the years I've seen how the support of people who have "been there, done that" has helped newcomers survive -- and even thrive -- during the hardest points of treatment for this often life-threatening illness. The main pages of the site contain a wealth of information about various types of head and neck cancer, making the site "one-stop shopping" for people afflicted with this disease and for their families, who are often equally as affected, though in different ways. Since my first experience with OCF in 2006 (and my husband's full recovery), I've offered support and advice, when appropriate, in the forums.

Informative place for anyone diagnosed with head and neck cancer. Website is well designed, accuracy of information and support on the forums is second to none.

My healthy and active husband (46) was diagnosed with Stage IVa throat cancer (SCC) on January 31, 2014. I am very thankful to have found the OCF website and its Patient Forum. The website has informative and thorough answers to my questions concerning my husband's diagnosis, treatment, and recovery. The OCF's Patient Forum contains advice and personal accounts which provide me with relief that my fear, worry, frustration and anger as his caregiver is normal and has been felt before by others. The contributing members graciously offer their experience and insight, sometimes humorous, but also sometimes heartbreaking. But knowing I am not alone at 3:30 am with a question about peg tube feeding, radiation burns, or cisplatin is of great comfort to this caregiver. Thank you OCF.

oral cancer survivor now one year NED. OCF is an incredible resource for gathering real first hand experiences of those who are under treatment and those who have completed treatment. Other resources are invaluable to get up to speed on this cancer and educating those preparing for the difficult journey ahead.

The oral cancer survivors, caregivers, and people still fighting that posted on OCF's Patient Forum provided insight that my husband's doctors could not. Good advice and kind and encouraging words kept him going during some very dark days, and I am very grateful.

OCF is a great community for anyone impacted by oral cancer. Every day OCF replaces fear and despair with information and hope. Best of the best nonprofits.

I survived oral cancer and can't thank the OCF enough for all that it has done fopr me over the last 8 years of recovery.

As a caregiver to someone with oral cancer, I have relied heavily on the OCF forum for support and guidance during and after my husband's treatment. There is no substitute for being able to immediately talk with hundreds of others who have gone through the process before you, and to have this forum available 24 hours a day. I am extremely grateful for the support I have received at all hours of the day and night. I would have felt much more alone and in the dark if I had not found this organization.

Great information on head and neck cancer! Provides support for patients before, during, and after treatment. They do good work.

This website has been so helpful to me. Diagnosed in April 2014 with squamous cell carcinoma on base of tongue, still in treatment awaiting radiation. So great to know you are not alone in facing this awful disease.

On April 23, 2008, I was diagnosed with squamous cell carcinoma on my left lateral tongue. Recommended treatment was a partial glossectomy with reconstruction, neck dissection and 7 weeks radiation with concurrent chemotherapy. Yea, it was all Greek to me too! But with the help of the Oral Cancer Foundation and in particular, the user forums, I was able to navigate my treatment and nearly 6 years after treatment, I'm still here and thriving. I cannot begin to imagine where I'd be, or *how* I'd be without the resources and support I found at OCF.

I began this journey July 18, 2003. There is so much to learn and the medical community doesn't manage the side effects of treatment well. Through the Oral Cancer foundation, I have met thousands of people and almost all of them have had suggestions as to what worked best for them. Because of the randomness of recovery, this information proved valuable to me back then and continues to.

I believe the Oral Cancer Foundation provides the most science-based evidence possible to help disseminate all the complexities of treatment.

I was diagnosed with stage 3 tongue cancer last August. As a 35 year old mother of 3 I was devastated. I of course went on the Internet to learn all I could about oral cancer. I came across this site and immediately felt at home. I was able to get support all during my radiation and chemo treatments. I was also able to relate to others and help with issues as well. I could not have gotten through it without this site!

Never would I thought my husband would face cancer at the age of 57. What a shock to have oral cancer since he never smoked or drank and it was non HPV. Through this site I have found the information and support that helped me as a caregiver go through this journey of treatment. Often issues would arise from radiation and treatment and I was able to relax and say that is normal from what others had shared of their experiences. There are many knowledgeable people who continue to offer their advice and opinions and share their personal experience. The forum is a place to come to when support is needed from those who have been down the same road because often friends and relatives just don't relate to what we are going through.

In the past month I've been diagnosed with an oral cancer. I began to search for information (in addition to what was provided by my consulting oncologists) and was greatly relieved to find such a great resource as this and so specific to my ordeal. Not merely informational but supportive and caring.

I was diagnosed with oral cancer back in April of 2014. With very little information on my condition I did a quick online search to try to learn more and luckily stumbled upon the Oral Cancer Foundation. The boards and forums were filled with information and other people in similar situations. When you face something like this it is truly a blessing to be able to get information and talk to other survivors or caregivers and to feel supported from people who fully understand what you are going through. This site provides a wealth of knowledge and hope for people who are diagnosed. I am so glad that I found it as I am sure it would have been much harder had I not been able to get advise and support from those who have traveled a similar path.

I wish I had found the Oral Cancer Foundation before I did, it would have alleviated my suffering greatly.

The amount of "been there, done that" type of information available and freely given by those who have been through this ordeal is both amazing and incredibly useful.

I continue to suffer from recurrences of the cancer (I'm in my 6th at present) and this organization continues to provide comfort and support from the members to the members, God Bless the OCF and its members!

The Oran Cancer Foundation is an organization that deserves support at all levels!

As the caregiver to my husband, diagnosed 6 years ago with stage 4 base of tongue cancer, the Oral Cancer Foundation was my most important resource for information and support, outside of his physicians. I could even make the case that medical information, without support from the OCF, would not have been as successful.

It is almost impossible to explain how grueling the treatment for oral cancer was to complete. Once completed, we still needed help with numerous difficult side effects of the treatment. Six years post-treatment, I still rely on the information and member forum section of the OCF.

The Oral Cancer Foundation (OCF) is the very best small nonprofit! They help thousands of oral cancer patients and caregivers with their online forum. The OCF helps educate the public with awareness walks and oral cancer screenings. If all that isnt enough, they fund research projects to help make oral cancer discovered earlier and easier treatments for patients. The Oral Cancer Foundation is a wonderful organization that makes the most out of every cent. They could give other groups a real education on what a nonprofit is supposed to represent.

The Oral Cancer Foundation was vital to my recovery from head and neck cancer. The level of concern and caring from Foundation members and all those who contribute to its forums is simply amazing. I'm proud to be a member of the OCF family.

With my husband's diagnosis of throat cancer, my world spun wildly. We made it through the initial treatment. When we learned that the cancer had spread and wasn't as neatly contained as we'd been led to think it would be....my world crashed. It was then that I realized I needed not just the informational help, but also the emotional help, that was offered on OCF. I have made some new kind of friends, and I can't begin to elucidate all that the site has done for me--and by extension, for my family.

The most amazing forum with very knowledgeable and supportive people. I wish I had found it earlier...

I found OCF when researching reconstruction of my mandible which had been removed because of cancer. I learned a great deal from the website and received honest and helpful information and support from the forums. I continue to follow the latest news via the RSS feed on my homepage. On the forums I learned much about the importance of having others who understand the impact this form of cancer makes in a person's life. I have had two other forms of cancer and fond this site to be much clearer, better organized, and more reliable on a scientific level than sites devoted to other forms of cancer.

This site was such a blessing after my treatments for stage 4 head and neck cancer, and continues to be a part of my life as a place to go to give and receive moral support, Love everyone on the forum and Brian Hill does a great job keeping us all up to date on developments in research and developments.

When my husband developed worrisome symptoms three years ago, the OCF provided emotional support for me as a caregiver, and education for both of us moving through diagnosis, work-up for treatments, the treatment itself, recovery and return to a new normal. OCF provides education, emotional support, and a host of practical tips on dealing with this dreadful disease. My husband made it through in good order, and this morning we enjoyed a wonderful walk in the park together. OCF helped get us there.

I found this site after my boyfriend was diagnosed with cancer. The site and the members have been extremely helpful over the past 3 months, both in the emotional support and the information about treatments. This is an awesome organization, and I feel so blessed that they are available for all of us struggling as patients, and caregivers!!

I learned about this site from a web search 7years ago when I was first told about my oral cancer. For me it has been very helpful from there forum pages. If you have a question or a concern just type up your note and you will get replies back to help. It great to have a strong support system like this out there.

Going through oral cancer a few years ago, I learned about OCF from my oncologist. Since then I've been a frequent visitor to the forums, read nearly all the educational material and become a regular donor. I can't say enough about the amazing support and expertise offered by both the Foundation itself and the wonderful people who comprise its members, volunteers and just plain Joe and Jane Public Citizens. I've been to many similar sites dealing with other personal medical issues. The Oral Cancer Foundation is the gold standard.

I found the ocf site soon after I was diagnosed I learned more in the next couple days than my doctors told me over the following weeks I had answers to my own questions and doctors agreed when asked remarkable site with incredible angels waiting to help you with your struggles even when they are going through there own, I still visit ( lurk) to learn new treatments and keep informed thank you ocf

When my mom was diagnosed this site really helped me too become a patient advocate. Members here encouraged me to push for further treatment options for my mom. I am thankful for this wonderful group!!

The best site to go for information and support if you are an oral cancer patient, caregiver, family member or friend of someone going through this disease. I did go through it and found the information and support invaluable.

The BEST by leaps and bounds Oral Cancer Foundation in the world. I found this site 7 years ago during my treatment for Stage IV oral cancer and was helped beyond what any doctor could do and I am still active today helping others going through the same treatment.

They have a very informative website where you can get educated on the disease, and their forum is a wonderful place to be part of a community of people going through the same thing...it's incredibly comforting to reach others stories, ask questions, read about others' situations etc. and their forum leaders are always available and quick to offer answers and advice. I've met the most wonderful people through this site.

There will never be enough words to express my gratitude for the Oral Cancer Foundation website and the people on it. This is my second go around with oral cancer and I'm currently in treatment. I could not have made it emotionally this far without the OCF family. So many people on the site go about and beyond the call of duty to answer questions, encourage and impart invaluable information. Another aspect that I really appreciate about the website is that it's more than just a forum. It also has all the latest information on everything from research, clinical trials, news articles, and rehabilitation, just to name a few. Thank you OCF! - ngk

Hello my name is Shawn, When I found out that I had squamous cell carcinoma the first thing I did after telling my family was to find out as much as I could about my particular cancer. I wanted to be informed so that I could better make choices when it came to what treatments would suit me best in the road ahead of me. I believe when I found The Oral Cancer Foundation Was a pivotal point in my journey.
Not only did I find answers to my many questions and concerns, and I think now more importantly I found friendship and compassion. I had an ally in my battle with oral cancer. And for this I will be eternally thankful.

When I was diagnosed with oral cancer in February 2013 this site provided valuable support and advice. It is a place you can turn to with any question knowing that you will not be judged or your fears belittled. People are friendly and kind and will do there utmost to help and encourage you. Although the site is based in the USA people from all over the world can access the resources and help provided by the site.

I have had oral cancer twice, without any known cause (no tobacco/drinking or HPV). Unfortunately, I won't be the only one you hear about getting oral cancer in the future. I also know that without the help of The Oral Cancer Foundation, I would have felt completely lost and alone when I was diagnosed. It has been through OCF that I have found great support and friendships that will last a lifetime. Sadly, some of those "lifetimes" have been cut tragically short, in an unfair and brutal manner.

The Oral Cancer Foundation and its community has some of the greatest people that donate their time, love, and compassion for the help of others currently fighting, surviving, or trying to make their way in this world without their loved one. They are the "go to" source for a plethora of accurate, medically-vetted information that will help cancer victims, their friends/families, and caregivers.

Their website helps you to understand the different types of oral/head/neck cancers, treatment protocols, things to expect, tips on dealing with all aspects of the disease, and how to navigate through your life since it has been turned upside down by a diagnosis of oral/oropharyngeal cancer. I would STRONGLY suggest getting on the patient support forums, where you will find old-timers, regulars, and newcomers who are ready and willing to welcome you with open arms. There is no better support forum, in my opinion.

The Oral Cancer Foundation certainly lives up to its mission..."The Oral Cancer Foundation is a national public service, non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities."

Thank you for giving me the opportunity to tell you about OCF!

Sincerely,
Kerri (2 time oral and oropharyngeal cancer survivor, one day at a time)

This forum is packed with an amazing amount of information and most importantly an incredible group of support members, who have all lived through it or been a caregiver. I found it at a very scary time, and it helped me get through it.

When I was given confirmation that I had HPV+ cancer on my tongue and neck I had no idea of who to turn to for support and information. My medical was top notch and leading research on my cancer. They gave me as much information as possible. I wanted someone who had gone before me to guide me through treatment. I hit this site and was given every item of information I needed from those who went before me and found the encouragement I needed to persevere and come out of my trials. I am 11 weeks post treatment and have a family on this website.

The Oral Cancer Foundation has the best up to date educational information. When my husband was diagnosed, it was a relief to find it, so that I could educate myself and be an effective advocate for him.

It's forum site is a life saver for exchanging experiences. It provides a place to give and receive advice and support to patients and caregivers.

After being misdiagnosed for 6 months, in Dec. 2010 I got the devastating news that I had Stage 3 tongue cancer. I had never known anyone who had this type of cancer, so off to the internet I went. I went ahead and had surgery on 1/3/2011 which got rid of the tumor but left me disfigured and unable to eat or even swallow or speak. It was months later that I finally found OCF. The volunteers and information I found there helped save me. I was at the point where I really was struggling to go on and after reading other survivors' stories, I realized that I had to go on one step at a time and come out the other end of the tunnel...not only for myself but for all of the others who were not going to survive and never had the chance that I had. Thank you OCF..... you people rock !

Following a tonsillectomy in Nov. 2007, I was diagnosed with squamous-cell cancer which was under my right tonsil and had spread to some nodes on the left side. This was followed by 7 weeks of radiation with 1 day/week chemo ending in Feb. 2008. At that time, I knew absolutely nothing about oral cancer and fortunately, I found the Oral Cancer Foundation site. This was truly a blessing, because as a member, I was able to correspond with others who had experienced things I was experiencing and I could write questions about problems and what I was going through. Other members would join in immediately with their suggestions and like experiences, and offers of help. I learned far more from the Forum members than I ever learned from my doctors. I always got an answer to my questions from two of the members, Christine and Eric, almost immediately. I thank the good Lord for the work, time, and effort Brian Hill exerts for the Forum as OCF Founder and Director. I would give this organization 10 stars if possible.

My husband was diagnosed with Tonsil Cancer, Stage III in May of 2013. Thanks to this wonderful group of survivors who supported us through each scary step of his treatment. Although the Oncologists had given us general information and statistics for this type of cancer and it's treatment (radiation/chemo), to receive information from wonderful people who have survived this Cancer made ALL the difference in accepting vs. being proactive in this journey, being hopeful vs hopeless.
Because of suggestions and encouragements from this group (and despite the damage and post-treatment effects of radiation), one month out from treatment, my husband is almost at 100% - working full time, eating and swallowing, traveling, SURFING! We are a grateful family, to have this kind of hand-holding, during an extremely tough time. Aloha....

When my sister was diagnosed with oral cancer she found it very difficult to share her problems and concerns with her family or friends as she felt they did not understand what she was truly going thru. She turned to the oral cancer foundation for understanding and support. She was able to share her fears, learn how to manage her treatment, and speak honestly and openly with what went from complete strangers to true friends. No other organization gave her the sense of self that this organization did. No one else shared their personal history like the members of this organization did. She was never alone as long as she had access to her computer. I could never thank this organization enough for what they gave her.

This site, the people that run it and the support it gives OC patients like myself is invaluable! It's hard enough to deal with a cancer diagnosis, treatment and recovery. I can honestly say OCF has made my journey with cancer one that I can now navigate.

Oral cancer brings with it a host of problems, such as swallowing difficulties, learning to use stomach pegs for the first time, losing one's sense of taste - not to mention the side-effects of either chemo or radiation.
The Oral Cancer team were there for me throughout the journey. Having access to expert opinion and to others who had travelled down the same road made all the difference.

Hearing the words "You have cancer" sends you into a downward tailspin. Finding the OCF website and the survivors forum is a lifeline to pull you out of the despair and give you hope to survive treatment. I've had both oral cancer and breast cancer and the treatments are 180 degrees different. It is one long hellish trip. This site not only shows you in pictures what you are up against but gives you thousands of survivors that have made it through and can help you make that journey also. I'm a stage IV tonsil cancer 11 year survivor and this site helped get me here!

When I was diagnosed with oral cancer I knew nothing about the disease and how prevalent it was in society, with ocf's help I was able to understand the standard treatment course and prepare myself for the battle that oral cancer is. The members and subscribers were incredibly supportive and informative on all aspects of the cancer journey from diagnoses to being a survivor.....thank you OCF

I found OCF after I was diagnosed with oral cancer. OCF as a plethora of good information. Most important the information is not just cut an pasted together but is vetted and researched.... AND updated. The most importantly there is an outstanding forum for patients and support people that addressed issues that arise before, during and after treatment. This provides info and discussion on radiation, surgery and the many aspects of chemo therapy by people who are undergoing this and by cancer survivors. These survivors come from all walks of life and include, dentists, other health care providers etc. Want to know how to deal with a PEG, physically and emotionally, read survivor stories.
The forum is monitored by people with inside knowledge..... oral cancer survivors.

I found OCF when my mother was diagnosed with oral cancer some years ago. The support and information I received from the members was phenomenal. They truly cared about what we were going through. I found myself on the board daily updating my new friends, encouraging others and scouring the website for vital information, which was easily accessible and extremely informative. Had it not of been for OCF, I'm not sure how I would have made it through our journey all alone!

When I was diagnosed at the age of 36, like so many, I knew nothing of oral cancer. OCF helps many people affected by OC through it's well documented, spot on accurate information as well as its on-line support group that teaches others through first hand knowledge and experiences from great people all around the world. An important factor that cannot be overlooked is everything done by Brian Hill, and all the awesome volunteers that do all the leg work to get the word out for early OC detection! They help lives, they save lives, they make a difference in someone's life every single day, 365 days a year. OCF is an asset and a gift to so many individuals.

Raymond Flaherty, OC survivor

I am righting this for my friend Lisa Petersen who was diagnosed with Stage 3 squamous cell carcinoma....cancer of the tongue in 2010. After a very short battle with this disease, she lost her life at 41 years old. Lisa was determined to speak, but cancer silenced her words. Cancer has not silenced her voice..... During her fight, she contacted the Oral Cancer Foundation, and found support with two wonderful women dedicated to this organization, Christine Brader and Susan Lauria. They showed so much support for her while she was ill. Lisa was so full of life even though her body was failing from this disease. If Lisa was alive today......she would be righting this to support the Oral Cancer Foundation. She wanted to do a walk with Chrisine Brader in her future, which never happened. I have become Lisa's Voice to help spread the awareness of this silent deadly disease. Through the help of Christine and Susan I held Lisa's Voice Oral Cancer Awareness event to support the Oral Cancer Foundation. I would give this organization 10 stars!!!! So many hardworking volunteers and the dedication is unbelievable. The dental communities across the US and other countries give the OCF total support. Cancer was not in Lisa's plan for her life, but if she was here today, she would be righting this.

I was diagnosed in August 2009. It was a very scary time. I had no idea what to expect or where to turn for first hand information until my sister found OCF. At a time of disbelief and horror, the family that is OCF was there with information, guidance, compassion, understanding and the kind of first-hand knowledge I needed to walk me through the harrowing experience that is oral cancer. To have access to immediate answers and information 24/7 is truly a unique and invaluable resource for patients, caregivers, family and friends alike. I have made lifelong friends among many members of OCF who continue to offer comfort and support in ways that friends and family could never understand. It's a place where bouts of depression are understood, accepted and worked through in a way that only someone with the same experience can relate to.

In 2007 my father was diagnosed with oral cancer. He had just turned 75 years old and he and my mother were not very familiar with using the internet, so I set off to find as much information as I could to help them out. Almost instantly I found the Oral Cancer Foundation. Everyone on the forum was so helpful and supportive during our 18 month journey. We knew absolutely nothing about oral cancer and the little bit we had heard from the doctors was very scary.

24 hours a day 7 days a week I was able to connect with survivors and caregivers who would be there to lend a listening ear or give advice on how to deal with the daily struggles of having to adjust to this "new normal". Sometimes I felt like we got more information on how to deal with the daily struggles of eating and other issues that are only specific to oral cancer patients than we did from the doctors that were actually treating my dad.

I highly recommend OCF to anyone who is going through or a caregiver to someone with oral cancer. I cannot imagine what our life would have been like without the help of the caring, compassionate people that I met along our journey. I will be forever grateful for their help.

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.

In the spring of 2006, my perfect, busy, wonderful, HEALTHY life, came to a crashing, thundering halt. One phone call on May 1st and my life changed forever..."you have cancer"....three simple words.

What followed immediately thereafter was horrific; the screams of denial from my family, my children were teenagers suddenly thrust into a situation that most do not experience until their 50's...the potential loss of a parent. Trying to find information on oral cancer was frustrating...there simply wasn't much available from the Doctors, in the library or on the web...until I found the Oral Cancer Foundation.

A few moments there, and I knew, deep down, things would be all right. When you're diagnosed with cancer, your world is suddenly filled with a lot of people; family, friends, friends of friends and family, medical professionals, and then if you're very lucky, you find the support and compassion of people who have been there....like the Oral Cancer Foundation.

These aren't a bunch of "internet experts"...these people are my FAMILY. They had walked the same path, undergone the same horrors that I went through, had the same fears, the same lack of information initially.

I fought the Beast that is oral cancer actively for a year. the following 6 years have been a blessing; seeing my children become adults, marry and have Grandchildren for me to spoil. I have the tools I need to live my life in my "new normal". When there are bumps in the road, I ALWAYS have my family at OCF to turn back to for knowledgeable advice, support and compassion. The people at OCF are different than anyone else in my new, "post cancer" life; my OCF family GET IT. They have walked in my shoes, and they understand that even with the new lease on life given to my by the amazing medical expertise around me, there would be many challenges to face. Without them, many of those challenges would have been insurmountable. With them, I know I can make it through.

Wayne Reimer
Regina, Saskatchewan

My husband has battled with oral cancer and it's after effects for the last 4 years. Without the support and guidance from OCF I don't think we would have coped nearly as well. We are in Australia and have minimal knowledge available here for head and neck cancers. Support is also very minimal. There are organisations that do a wonderful job here but none that focus just on what we were dealing with. It was very comforting to me as his carer, to find OCF and I was welcomed with open arms. Even now 4 years later as we still struggle on and face new challenges, I know everyone is still there for us.

My son was diagnosed with oral cancer at the age of 27. We were devistated and knew nothing about the disease. He searched and found The Oral Cancer Foundation. All the volunteers and survivors and care givers helped my son as he went thru this horrible time. They helped him cope and told him what to expect and what questions he needed to ask his providers. They literally became his family. He passed away last July but he was trying to raise awareness and told everyone he could about the OCF. He wanted to help others as the people involved with OCF helped him. He was a amazing man and would have helped others if he had survived. We will always be grateful to this group of people that give so much to others dealing with this disease.

When my partner was fighting oral cancer, the support and advice I got was incredible. I had friends to turn to for advice, ideas, and somewhere where as a caregiver I could have a rant and not be judged. Thanks for your support and the tireless work you all do to bring oral cancer to the forefront. From accross the pond I support all you do.

The Oral Cancer Foundation saved my life while I was going through 7 weeks of chemo and radiation. I know in my heart of hearts that I never would finished these aweful treatemnts without the love and support I got from both the very active members and the other cancer patients who were at the same stages of treatment as myself. The group helped arm me with the facts about oral cancer and the treatment options. The other patients and I leaned on eachother for support and guidence. They all became like family to me. I really really don't know where I'd be without them. I'm SO glad I found these folks !!!

The Oral Cancer Foundation provided comfort, support and hope to my mom as she battled a nine year fight against oral cancer. The friends my mom made through the Oral Cancer Foundation have continued to be a support to me after my mom passed away. I will support the Oral Cancer Foundation and their efforts for the rest of my life and I will always be grateful for this wonderful organization for all that they do.

I've never seen a charity do more with less. The minimal staff and passionate volunteers made a personal difference with me when I was struggling with the diagnosis. So little information was out there about a relatively unknown disease and this website was flush with information for both patients and caregivers. Their support board is unparalleled with questions answered 24/7. Their efforts in the area of awareness and outreach are outstanding. I don't know where I would have turned without them.

OralCancer.org, and the dedicated members that are so active on it, were my lifeline while I was being treated for my stage4 cancer for the tonsils. You reached out to me when I most needed you (at 2am) and I will be here for those that come after me. Thank you for your passion to help.

When my husband was diagnosed it was terrifying. We had so many questions and so we searched the internet. When we found The Oral Cancer Foundation, not only did we find answers to our questions, we found a family that included others battling along with us as well as many folks who had fought the battle and won, but were still on the forums to help others get through treatment. It was an amazing gift to me, the caregiver, especially. I felt very alone prior to finding the forums. Nobody really understood what I was going through, or they didn't care to hear it as it scared them too much. On the forums I found support.
Thank you Oral Cancer Foundation!!

I was diagnosed with tongue cancer at the age of 24. After losing over half of my tongue, the OCF was one of the only places I could go to find empathy, answers, and support from others who knew what I was going through. I have now been cancer free for over a year, and the OCF continues to provide support and comfort to me. I am very glad I found this foundation!

I am young, and found out on my 30th birthday that I had been diagnosed with oral cancer. I have never smoked, chewed, had a cavity, or excessively drank in my life, yet this terrible disease has chosen me. I can say that the people at The Oral Cancer Foundation have helped make this trying and challenging time more bearable. I am extremely grateful for their guidance, help, and counsel. This organization is a great not-for-profit that raises awareness about a terrible cancer that does not get much recognition. I thank God everyday for such a wonderful group of people.

I think I speak for many people when I say that without OCF and the hard work of Brian Hill, Christine Brader, and Eric Statler there are a lot of us who wouldn't even be here, myself one of them.
This site is an invaluable educational and supportive tool for those newly diagnosed, treating and surviving all types and stages of Oral Cancer. This site not only provides information, it helps spread awareness and brings to the public just what a disfiguring and life altering cancer this is.
It also helps with those in a supportive role caring for victims of this cruel disease.

My husband this time last year was found to have stage four BOT oral cancer my life went into a spin .Thank God I found this site I got so much advice which helped us know what questions to ask the doctors ,test to be taked befor he started treatment (i.e Hearing tests,thiriod gland etc) what to expect and how to prepare for what was to come.every question is answered and someone there has gone through what you are in the process of going through .I really needed someone to talk to and I was only the carier and they could not have been kinder trying to help me ,they spent time replying to my quiries , concerns and frigal emotional state with unbelivable kindness and with well thought out advice. I will be forever greatfull to those who work with the OCF ,They have a vocation they give freely of the time and experence and they show love and compassion and want the best for all who contact them.
Thank you for being one of my life lines,somewhere to go to in the dark of night when I most needed to quell my fears.

Seana

Ps.The question "How do you feel you were treated by the organization? answer "they could not have done more for me" so QUITE Well" whice is your only option is to lame !

The work that the OCF does is so important. Oral cancer is typically diagnosed in it's later stages, when it is more difficult to treat. My cancer was allowed to progress for three years before diagnosis, even though I was under an Ear Nose and Throat doctor's care for the painless swelling in my throat. I did not fit the stereotype of the 'typical' oral cancer patient. And thus, my doctor didn't even consider cancer as a possibility until my tonsils were removed and discovered to be cancerous.
I required the typically aggressive treatment that a later stage oral cancer patient receives. having to go through that treatment could been avoided if my doctor had realized that oral cancer is affecting more and more younger people, and is not just a disease of smokers and heavy drinkers.
The OCF has made great strides in breaking down the stereotype of the typical oral cancer patient; and by bringing about more awareness for the disease, which should lead to earlier detection of oral cancers.
Treatment for oral cancer is among the most damaging of cancer treatments. Even if your cancer is cured, you will have lifelong side effects because of the damage. The OCF is a great resource for long term survivors of the disease who, due to the nature of the damage inflicted, will require lifelong support.

I am a six year survivor of the disease and it's treatment, but not a day goes by that I am not reminded of it.

Teresa

Congratulations to the Oral Cancer Foundation and Brian Hill for providing accurate information to oral cancer patients and their caregivers. Also to the administrators who show immense compassion and dedication to the forum and the giving of their time voluntarily. The news area is always at the forefront of providing the latest up to date articles and information.
As a 6 year plus survivor I still come here to offer help where I can. I am still being monitored for pre-cancerous issues that show up in yearly biopsies so will also keep coming back with any questions and support that I may need.
The range of information and support from members is extraordinary.
Gabe

This forum saved my partners life and my sanity. The posts are made by the patients going through treatment, the survivors of treatment and the caregivers facing issues of their own. The forum is moderated, so the information is factual (as far as non medics can make it), honest and supportive. Three years on, I still visit the site to share our experience with newly diagnosed people to payback the extraordinary support and information I received when A and I were going through it. Every head and neck cancer unit should have this forum on their list of resources.

I cannot say enough about the Oral Cancer Foundation and what it has meant to me as a survivor. I check into the survivor/patient forum every day. The medical information is easy to understand and the people who participate are some of the most amazing people I have ever met. It has helped me to realize that I am not alone. There are no support groups for oral cancer in my area, and this is one way for me to share my feelings and find out that others are going through the same thing. My only regret is that I did not discover this site until after I had completed my treatments.

As a Dental Hygienist, The Oral Cancer Foundation is invaluable to me. Just this week a patient was diagnosed with Oral Cancer. Our office was able to give the family a packet of information, that will aid them enormously during this time. It was all taken from The Oral Cancer Foundation website.

The Oral Cancer Foundation allows dental professionals to stay educated on the latest research and information on Oral Cancer, and pass this on to our patients. Because of OCF sponsoring April as Oral Cancer Awareness month, and supporting offices nation wide, as they offer free Oral Cancer screenings during the month of April, we are able to reach the local community and provide screenings to those who might not other wise receive a life saving screening.

Additionally, the OCF awareness events held across the country throughout the year, provide another avenue to reach out to the local community in raising awareness and providing screenings.

The survivor/ patient forum is amazing. The mentorship and advocacy is unparalleled.

As a survivor, the Oral Cancer Foundation, was there for me to help navigate the whirl wind of appointments. I recommend OCF to many others who I meet who are dealing with oral cancer.

My husband is a 3 time Oral Cancer Survivor and this website has been a life-line for me. In the first bout, I went to the site nearly everyday, finding answers to my questions regarding his sickness. The others who had already been through, or were currently going through treatments were full of information and tips and tricks on how to make life easier for the patient. We are active in the OCF community and have made quite a few virtual friends through it, but we have also gained some real friends. Because of the information on the site we were able to take part in our first oral cancer walk in Seattle, WA. We live on the other side of the state and we gathered more than 20 friends to caravan over to Seattle and participate in the event. Our team raised nearly 10,000 and thankfully we know that the greatest portion possible is used for awareness campaigns and research.

As my wife goes through her struggle with tongue cancer, the OCF website and the community of people on their forums were of great help preparing us to what was ahead in our quest to become cancer free. Unlike other websites & forums, the information presented was always top quality with the administrators and founders of the organisation going above and beyond to ensure that the views expressed were not skewed but based on scientific evidence.

This has to be the best site on the web for information and support for oral cancer sufferers and survivors alike. Members here share everything from recipes and soft food lists to uncommon symptoms your dr. Never told you about. Experienced members give advice and kudos, and support where needed.

When my husband was diagnosed with Stave IV Base of Tongue cancer in December of 2010 the first thing I did was go to the internet. There were a lot of sites out there but the Oral Cancer Foundation was the only one we ended up using. We were lucky to find this site so early on in our journey. From the beginning we started posting on the message boards and received so much important information and input from people who had gone through the same types of treatments & experiences. Unfortuantely, my husband passed away only 7 months later but I continue to be a member of the forums where I can receive guidance and well as help those caregivers by sharing my story and giving them support. I don't know where I would be without them! I have also been able to meet some of my "friends" in real life and we continue to be a great local support system for eachother.

I was diagnosed with stage IV tongue cancer in May of 2009. Unfotunately I didn't know about OCF at that time. However, during my recovery, I log on to OCF at least once a day. I always learn something. Oral cancer is one cancer where the side effects of radiation, especially don't stop. I find it so helpful to know that I'm not alone. I also participate in a Facebook page for head and neck cancer survivors, which is fine, too, but it can't compare to OCF. They screen comments and are careful not to have anything posted that isn't medically sound. I am so grateful for the support and knowledge that I have received from OCF.

I was 33 years old when I was diagnosed with StageIV metastatic Oral Cancer. The treatments and surgeries that saved my life however left me disfigured, disabled, and dependent on the opiate pain medication Fentanyl. I felt lost and alone, without hope. I found the Oral Cancer Foundation's Online support forums 11 months after diagnosis and it was a ray of light for me. I was able to connect with survivors and other patients who understood my struggle and relate to where I was at. With their advice and support I've been able to rebuild my body and free myself from the opiates, and begin to live again. I can't express the gratitude in my heart for the Oral Cancer Foundation or the Angels of mercy who are the staff and volunteers that spend their time helping those in need.

My name is Eian Evans. I'm 28 years old and I found out I had salivary gland May.2012. I really didnt understand where to begin to look for information about my rare cancer. I have been through 2 major surgeries on my left side and one round of radiation. This website has helped me in many ways, it gave me a place to vent when nobody could relate to me. It gave me a place of comfort as well. I just had surgery on November.5th,2012. I pray and wish everyone the best in their journey of life. We are strong individuals, we are fighters.

When I was first diagnosed with base of tongue cancer (Oral Cancer) I had no idea where to go to get information about my cancer. Oral Cancer is not a common cancer and it seemed the information I found was "all over the board". Finding the Oral Cancer Foundation website was truly wonderful. It clearly defined and laid out what I had and gave me a wealth of information to make decisions. Though I am only 5 months from my last treatment, it is my desire now to give back to those who helped me so much in my time of need. The Oral Cancer Foundation is at the top of that list. ~ Tim C. / Idaho

I just just gave a patient the news that her biopsy came back positive for dyslasia and possible early invasive squamous cell carcinoma in her mouth. I referred her to an excellent oral surgeon and to this amazing website. I suspect she'll be logging in before she meets with the surgeon, and I'm grateful that I could connect her to this resource. It's comprehensive scope and obvious commitment to providing understandable, timely, and reliable information to those who need it most of all, patients, is amazing. Thank you for being a solid link in the chain of care for this awful disease.

Loved this site, as a Dental Hygienist. I realize more and more that my role is not only to clean the teeth, more importantly to check for oral cancer and save a life. I would love a video showing each step of a through screening process. Thank you Kim

When my husband was diagnosed with Stage IVb throat cancer, i grabbed every pamphlet in the hospital. The foremost organization that offered information, education, and support was OCF. Exploring the website, i was immediately grateful to discover the widespread community, dove into the research and information available, and communicated with Brian Hill about how to give back in the future. My husband is now TWO YEARS ALL CLEAR from this disease, and we hold OCF as the clear leader in public information and outreach on this disease.

My husband was diagnosed with oral cancer on 8/13/08. Since that time, the OCF has been instrumental in lending their support and time to answer questions and give information to my husband and I. Their organization gave us extreme relief in knowing that there were others out there who could understand exactly what we were going through with the type of cancer my husband had. We are very grateful that Brian Hill founded this organization. He, especially, was a wonderful source of support and lended his time freely whenever we were concerned about something and had a question for him.

I recently found the oralcancerfoundation web sight and only wish I had found it a year ago when I was struggling with my 55 year old husband's diagnosis of base of tongue cancer. I did not know of anyone with this type of cancer and have struggled over the past 10 months trying to educate myself about this disease and treatment modalities and the future. It is a very lonely cancer to have. Since finding this patient forum, I feel I finally have a place to go where there are others struggling with this type of cancer and it's devastating impact on quality of life. My questions can be answered by others who have been there. It has been a wonderful resource for followup questions and concerns This is a great organization but it has a huge task ahead of it: to educate the public and health care professionals about the increase in oral cancer, especially in those individuals who do not smoke or drink and whose cancer is probably related to HPV. Thank you, Nancy Mazzapica