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.
I found the Oral Cancer Foundation after I was diagnosed the Squamous Cell Carcinoma of the tongue. I was very depressed and discouraged about the diagnosis. The members of this site and forum were very encouraging and helpful to guide me direct me to where I needed to go. If I had not found this site I am not sure how i would be feeling today. The main part of the site is full of information about head and neck cancers. I will often go back to the main site and reread articles I have read to make sure I did not forget something. I will be forever grateful to OCF.
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.
The Oral Cancer Foundation is an amazing group of individuals that have experienced through thier own battle, or through the battle of loved ones the devestation and victories of Oral Cancer. My husband was diagnosed in 2005 as a 33 year old man. As his cancer is very rare in his age group, there was not a lot of information available as to it. Through the OCF I was able to research and be apart of a community that had experience in this disease. There were others going through the same caregiving tasks as me, and we were able to connect and give eachother support. I really appreciated the amount of knowledge that was present. I have seen that OCF has been doing a steady job of increasing awareness of this disease.
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
This helped my friend a great deal. Her husband was greatly helped by this organization. I highly recommend it to anybody.
Four years ago I started a journey which I never would have believed "Could happen to me". It was frightening, painful, debilitating, and financially stressful. As I went through treatment (2 different bouts) and came through the other side of treatment I was assisted by others on the Oral Cancer Foundation website who had "Been there, done that" and could not only help but truly understand. The resources are great and the caregivers on the site also assisted my family members along the way with what to expect. I now try to give back by helping others through their treatment and battle with this horrible disease. THANK YOU OCF!
I could not have made it through my treatment for oral cancer, or the recovery afterwards, without the information I gained from the OCF website, both the research articles they have there and the knowledgable people on the patient/survivor board where anyone strugling with this disease can get GOOD advice (misinformation and bad advice is quickly caught and erased--another plus for them). Through OCF and the pother survivors who post on the board, I found doctotrs for a second opinion as well as an expert that could help me with swallowing problems I had after treatment. The people there that had already been through what I went through are the ones that kept me going.
My brother-in-law and a great-niece both had cancer in thier mouths. They have both passed away, but while they were alive, the OCF helped, and has been a great comfort to my niece.
I work in biological research and have always viewed cancer or any other disease a problem to be solved objectively. Frankly, for that very reason I have never really cared for the toll it takes on people affected or their friends and families. I believed that there was not much I could contribute unless I was part of the solution. Until of course one of your own falls prey. My friend had oral cancer 2 years ago. He has done well since then. But I was privy to empathy that I wasn't sure I had before. The OCF was a huge factor in his successful fight. I am grateful and would like to contribute in other ways than I previously thought possible. Thank you.
The member forum for the Oral Cancer Foundation is the most positive place on the internet. The incredible knowlege base of the members provides caregivers and patients with both spiritual strength and medical knowledge to fight the good fight against all forms of oral cancer. My husband had to undergo both chemotherapy and radiotherapy for laryngeal cancer. The info provided in the member forums helped us make it through to the other side.
I am a caregiver to my husband who is suffering from Stage IV Cancer at the base of his tongue. This cancer is particularly deadly especially if the tumors do not test positive for HPV. Already he has had a recurrence and a third time would be "catastrophic" as one doctor warns us. OCF is the full service stop on the internet: news, research, facts. advocacy and a virtual support group. It has meant a lot to me and even more to my husband.
This is a great website that has helped many people spread the word about oral cancer, its causes and treatment. My friend has oral cancer and this disease has irrevocably changed her life. Her doctor told her it used to be known as the "alcoholics cancer" seeing as big risk factors include smoking and drinking, but she tell me that there are so many young, non smokers posting on the forum that it gets very difficult to watch. The well established connection of this cancer to a certain strain of HPV is finally getting known in the health care community.
I contribute to the organization due to the tremendous potential they have to save lives. Seeing how they have grown and helped so many people is very satisfying. The Oral Cancer Foundation has been instumental in educating as many phycicians and the public as they can. Remarkably, they do this on a shoe string or less budget. It would be very gratifying to see what they could accomplish with some respectable funding.
My friend Donna from Canada had tongue cancer. She looks good today but she has been through hell and back. Sometimes she gets very close to the people she meets there and then it is very hard for her when their cancer comes back. I help her through those times. We have been good friends for years. Although we are separated by miles we are together in friendship.
I'm 32 years old and have oral cancer. It started 3 years ago with a sore thoat. I have a husband and 2 little boys, that don't understand Why mommy is sick all the time. OCF has experience personal that answer my questions and give me support. There is some question they can't answer on line, so they refer you back to your doctor. I have lost about half of my tongue and my teeth,and I have a feeding tube and can not chew, swallow or talk. I've had 4 surgery and the OCF organization has been there for me, be it to rant or to know, what I can put down the feeding tube. or to just cry. They have given me new hope. They have good resources and easy to find answers.
The Oral Cancer was a great resource for my husband when he was battling tongue cancer. Prior to his tongue cancer, we had no awareness that oral cancer existed and that a simple screening should be done by dental professionals at every visit.
My mom has tongue cancer. She has been treated for it twice - Stage 1V bot times. The treatments have been just brutal but she has gotten through them. I know she has gotten alot of information from this website and made friends from it. It has given her alot of ideas about what to expect and what questions to ask the doctors.
I am in the medical field, and I have professionally, and personally dealt with this cancer. I lost a friend Minnie Ashworth leaving behind children, and grandchildren who loved who deeply, and dearly!!!! She fought a courageous fight, but lost her battle. But with this foundation, I believe that she had a great chance with their help, and support. I also had a patient with tongue cancer that is alive, and well. So this Foundation is not in vain!!!!
my mom had oral cancer and i know that her being able to talk to some of the people on here helped her get through a lot of it .
I am a caregiver. My wife Donna is a two time oral cancer survivor. She first had cancer in 2004 and then again in 2007. This has been a very rough time for us, but I know she spends alot of time on the Oral Cancer board and I know there are times when she has been helped alot by other people who have the same disease. So far I have not needed to go there to find out what other helpers are doing because our medical system provides alot of support.
This organization really helped out my friends in their time of need and I am thankful for that. They are also very thankful and have only good things to say about it.
I was diagnosed with base of tongue cancer a few years ago. Initially, my ENT talked of cutting out my tongue, then radiation and chemo, followed by slicing or disecting my neck near the jugular vein. Quite frankly I contemplated suicide. I will be forever be grateful to the Oral Cancer Foundation. We learned how to talk to the ENT by learning a so much from this site. The ENT saved my tongue, didn't slice up my neck, but I did go through some of the roughest chemo and radiation treatments according to him. I made it, and have been cancer free for 4 years.
My niece, a non-smoker, developed oral cancer in 2005. No one in our family ever had this disease so we could not offer her much advice or guidance. Fortunately she found the OCF website and forum to help her get outstanding advice and guidance. This really helped her deal with her disease and ask informed questions of her doctors.
OCF was such a great help to my daughter. She would set for hours talking to friends she had made thru this org. I know that this was a great help to her
Having cancer is taints you forever. Even if you are lucky enough to survive you are damaged. Your physicians are pretty much useless at that point. What is helpful is a community of cancer patients. This keeps you grounded and humble, the fact that I can write this makes me one of the lucky fews! As bad as it is it can change you for the better!
this organization helped my aunt and her family soo very much we thank you all soo much for all you do for familes that are dealing with oral cancer
I have oral cancer. This is a frightening experience, it is central. you do not get to just cut a little piece of tissue off... it affects speech, swallowing, taste etc.
My co-worker's brother died of oral cancer. When my son-in-law was diagnosed with base of tongue cancer, my daughter was a wreck. I wanted to shield her from the gruesome details my co-worker went through. My daughter then found OCF and learned a great deal. She was still on edge but became stronger as she learned more and more. My son-in-law did well and is cancer free now.
A very dear friend of mine and her family received support and help through friendships and advocay and information from the OCF. As an OC victem, the foundation was very helpful to her and her children. i suppor this foundation 100%
my friend's mom had oral cancer and the ocf was very helpful not only to her but to her entire family as they were dealing with the most difficult time in their lives
I have oral cancer, It has been very hard living alone and going thou this battle, I have rely on the good people at OCF. They have given me the will to live and not to give up. Only 2 more weeks of treatments, I can do this. I have a long road of recovery ahead and I know OCF members will be here to help me get thou it.
The oral cancer foundation provides much needed professional advice about many facets of oral cancer. This encompassed background info as well as much needed practical advice.
My daughter was diagnosed with oral cancer a few years ago. The help and support of the other survivors and caregivers she meet on the OCF forum helped her get through the treatment. The information on the website on oral cancer is the most comprehensive around. The Oral Cancer Foundation is a wonderful organization.
My mother passed away from oral cancer and it was the OCF that got her through 5 very trying years. The community that has been created through their very well maintained forums offers patients and care givers a place to share theirs and learn from others experiences. OCF should win this award because it is working very hard to spread awareness about a disease that is virtually unheard of to thise not effected by it. If my mother had not found the website, I hoonestly do not think she would have survived 5 years.
The OCF was very helpful when my cousin's daughter was diagnosed with oral cancer. Finding support and assistance at a difficult time can make the all the difference for the family and patient.
My mother was diagnosed with tongue cancer 4 years ago. She was a non-smoker and otherwise very healthy. It was a shock to hear that she had cancer. The treatment was difficult, but fortunately she found the Oral Cancer Foundation website to help her through it. The information on the website is the best around, and the support she received from the forum was outstanding.
I really appreciate all the information found on OCF. I refer to it all the time with my doctors and dentists. I am glad they teach so many professionals about oral cancer to better help us as patients. I found the forum during my treatment for tonsil cancer, and the kind and caring people helped me through my journey so far.
I am a Oral Hygenist. One of my patients referred me to The Oral Cancer Foundation site to learn more about the increasing occurance of oral cancer especially in younger people. This site was extemely informative. I have had many discussions with the Dentist I work for since then. Early detection is critical.
I am a dental professional that is very familiar with the oral cancer issue in the US, including the reasons that the disease is too often found late, and the impact of this fact on both survival and treatment related morbidity, as well as long term quality of life issues for patients. I have watched this small organization from its inception, and am amazed at how much it is able to accomplish with a mostly volunteer based staff, significant lack of funding, and significant obstacles in its path that are both political/professional related and science based issues. Many of the impressive list of achievements that OCF has racked up, are the result of innovative use of technology platforms that are effective and cost efficient, combined with highly creative approaches to accomplishing its mission and tasks by the management of the organization. The behemoth cancer organizations that take in hundreds of millions of dollars a year could learn something from this micro funded non profit. My guess is that if someone matched end result metrics dollar for dollar between OCF and any of the large organizations, they would become supporters of this entity as the best opportunity for their philanthropic investments. I have, before writing this, reviewed several organizations and the many comments made about them. One thing seems obvious to me. The 150+ reviews of this organization at the time of my writing come predominantly from people who have been served by OCF, and when looking at other larger organizations, volunteers, donors and staff dominate the reviews. That tells me a lot, and why I decided to take the time to write this review. These guys are in the trenches with those in need, and get the job done. The postings from those served are decidedly heartfelt, and as passionate as OCF itself. I have attended a lecture given to research professionals, in which OCF's founder was one of the presenters. I was impressed with his grasp of the complexity of the science of the viral etiology of the disease. I was even more impressed that his depth of understanding allowed him to speak without notes or the crutch of a PowerPoint presentation for two hours, but none of that compared to his passion. To a room full of scientists and researchers he brought the too often missing human component to the presentation, in a manner that was the combination of patient insight and a tactful "call to action" to those in attendance. Imagine my surprise after listening to someone delve the complex nature of oncoprotein messengers ability to alter cellular function, to find out that he was a lay person with a high school diploma. What this organization lacks in infrastructure it makes up in the development of strategic alliances. What it lacks in raw dollars to get their message out, it makes up for in creative and innovative approaches, often convincing celebrity spokespeople to deliver its message. What it does not lack in, is a true passion to serve the needs of others.
The Oral Cancer Foundation helped someone very important to me survive oral cancer. OCF not only helped him survive, but provided much needed support and information.
This organization is wonderful! My boss survived mouth cancer with the help of your organization; your organization made it possible for him to survive not only the disease, but the cure as well.
My friend was diagnosed with tongue cancer; your organization allowed him to not just survive the cure, but function and be sane. THANK YOU!!!
My wife was diagnosed with oral cancer at the age of 40. We knew nothing about oral cancer, it's treatment, or any of the side effects. We were lucky enough to find OCF shortly after she was diagnosed. It has been a valueble source of information for us.
My father-in-law is a 4+ year oral cancer survivor and has told me many times how helpful the Oral Cancer Foundation was for him during and after his cancer. He has also become very active on the OCF forum helping others.
My cousin's daughter had oral cancer and I know that the OCF was very helpful. She speaks highly of the all the services offered by OCF.
This company helped out my friend's husband when he was diagnosed with Oral Cancer. Very helpful organization. Very Informative site.
I was diagnosed with Oral Cancer on 5 23 2009. Upon hearing this I began searching for information. I was worried about the information I thought my doctors would tell me because the information I recieved seem to be sol little. I found the Oral Cancer Foundation after my surgery and started asking the questions that were scaring me the most. Warm hearted and experienced information came bac to me innediately. I was totally amazed by the foundation support group. Now that I am better versed in my situation I read through the information provided by the foundation. The foundation is where I was able to realise that my situation could be lived with and where others would share with me some oif the harder hardships I might encounter with me and the others that come here for answers.
OCF has been a GODSEND to me and my family. When my father was diagnosed with Oral Cancer... the website and message boards that they provide was the only thing that got us through! I found an instant online family filled with support, guidance, and lots of help in answering questions. This was an extremely difficult time for us, and my OCF family took me under their wing, and made things so much easier. Without OCF, we would have been lost and alone!!!
I have only recently become aware of The Oral Cancer Foundation's work through my friend Megan Cannon, however seeing all the work and her level of commitment to oral cancer awareness I have become more educated about oral cancer. The Oral Cancer Foundation has taught me so much more than I've ever learned in health class about prevention and awareness. I'm proud to be a supporter of The Oral Cancer Foundation.
I've been a smoker for 8 years now and it's probably the hardest thing I've had to endure throughout my hardships with life. Although I had quite for 2.5 years straight, I find myself today still lighting up. Each morning I wake up and cough for about a good minute, which is no way to start off your day. Since my personal friend Megan Cannon at OCF has informed me about the risk to my health, and her extreme concern for every individual that is putting themselves at risk from smoking, she has giving me the will to cut back and be more aware of how much I smoke. Today I am down to 4-6 cigarettes a day (sometimes more, sometimes less) from my 1 pack plus a day. Megan is perfect for OCF and their cause. Not only has OCF helped me, but through watching Megan inform and help so many others (people all alike) she has helped me to live a healthier life. So I want to say Thank You to Megan Cannon and OCF for their support.
Oral Cancer has been and still is one of the orphan cancers. Not many people know that oral cancer kills one person per hour,everyday 24 hrs a day. I did not know this eventhough I have been in dental field for quite some time now. I came to know about this from the facts and stats put together by the oral cancer foundation. That was an eye opener. I came to the OCF web page while I was looking for information to help my sis, when got diagnosed with cancer of oropharynx. The information on this website and in the forums has been great help in going about the treatment and locating the resources. This is my personal experience. and the people at the OCF are amazing, everyone truly wants to help and lower the mortality rate associated with oc by raising awareness and helping people by giving them much needed information. Without the Oral Cancer Foundation there would not have been any awareness about the death rate and devastation it's causing in the world. The OCF has forums are extremly helpful & support those who suffer the burdens of the disease. The Ocf has made the research efforts possible to identify HPV as a cause of oral cancer, I think which is remarkable. OCF is the best source of information & facts about the oral cancer on the web,period. I believe the oral cancer community would be worse off if Brian Hill or oral cancer foundation will not be there to create awareness and inform everyone about oral cancer.
This Organization provides up to date information on all aspects of oral cancer, including scientific as well as patient and recovery oriented issues
This foundation provides excellent info and support via an extensive web site AND a moderated extremely active forum. You get to discuss your health issues with fellow patients. This gives you a different an more accurate picture than what you get from your physician.
I can't explain the significant impact this site had on my daughter and myself. At 31 y/o she was diagnosed w/ tongue cancer. No known risk factor....shocking and devastating. Young Mom of one and pregnant w/ her second baby.... Had to terminate pregnancy to begin treatment. She battled this evil disease for 10 months before losing her fight against it. During that time OCF was a God send to us. She found a 'soulmate' who also was fighting the disease, her age and became support for each other! Pete helped them find each other, then we lost him to the disease. It becomes a 'family' of sorts between comrades in this horrendous battle, between patients and caregivers. Peace, education, support, and sincere caring is shared on this site. It is the most accurate in educational info of any site. Being a nurse for 30 yrs. I was so satisfied with the information given. What we need to do is reach even further to assist the public and medical/dental community to become more aware of this rapidly occuring cancer.