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.
I found the Oral Cancer Foundation about a week after my husband was diagnosed with oral cancer. Neither of us was familiar with this disease and our treatment center was an hour and a half away from our home. We had lots of questions and the good members of the forum on OCF and the wonderful educational pages made our journey easier. For patients and caregivers, family members and friends, this is a resource that is a must have!
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.
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.
I was diagnosed with oral cancer in March 2007. Prior to my diagnosis, I had heard nothing about oral cancer and didn't know it existed. With critical decisions to make, I trolled the web looking for reliable information and finally came across this site and it's marvelous boards post surgery. What a wealth of information I found while lurking and reading the boards. I was impressed with the knowledge of the survivors who were quick to share experiences with treatment, decision making and daily challenges. I was impressed with the caregivers who came to share ideas and support. I was impressed by the dentists and other medical personnel who explained, translated and helped patients wind through treatment. No question was too small, no poster belittled. It was and continues to be today the greatest source of information and support for oral cancer survivors, patients and those awaiting diagnosis. For a relatively rare cancer on the rise, this site is essential tool and resource for us all that provides the best support with the smallest of financial expenditures. Beyond what it does for current patients, the oral cancer foundation does much to promote prevention and early detection. You can't get more bang for your charity buck anywhere else.
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!!
My husband was diagnosed with oral cancer in July of 2011. We completed treatment at the end of October, which is just about the time I found the forums of the Oral Cancer Foundation. It was such a blessing to have so many people understand exactly what I was going through as a caregiver. I found this awesome support system that helped us get through the next couple of months after treatment ended. Any questions I had someone had an answer because they had been through it. Just wonderful!Thank you so much OCF for providing such a valued support for us.
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.
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.
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.
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.
As a carer for my partner afflicted with oropharyngeal cancer, this site became my lifeline. The information provided is 1st class, the support from other survivors and carers who "get it " is invaluable, and the opportunity to explore options and present them to our healthcare providers saved my partner's life.
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.
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.