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.
There is absolutely no question about whether I would be here now if not for the Oral Cancer Foundation. I would not be. It is now 12 years since my first oral cancer diagnosis and not a single day goes by that I don't feel grateful to OCF for their support, the friendships made and the ongoing help that I know will instantly be there when I need it. That help may come in the form of high quality information with the latest techniques and information on procedures front and center, or it may be a shoulder to cry on in the patient and survivor forum. One never really 'gets over' oral cancer. We live with it every single day - in our speech - in our eating abilities (or inabilities) - in our relationships - and in the long term effects of some of our treatments. Not one day has ever gone by that I could say I was "over" oral cancer, and the Oral Caner Foundation has been there with me for every step of the way. My OCF name is "Pandora". I chose that because Pandora's box ended up with just one thing in it - HOPE. To me that was where I was at when I joined - HOPE. I continue to HOPE - for myself and all oral cancer warriors.
In 2004 I was diagnosed with tongue cancer. This was a disease that NO ONE had ever heard of at the time - myself included. Yes, I was a smoker, and I was always fearful of lung cancer - but Oral Cancer?? Who had ever heard of that. I felt lost. Alone. The Oral Cancer Foundation became my source of information and comfort. There I met the most amazing people who knew of what I spoke.
When I was diagnosed with a recurrence in 2007, not one person on OCF gave me the sad "puppy dog eyes" or exhibited the "oh you poor thing" which went with said puppy dog eyes. They walked with me - helped me to find factual documentation and look at some care which perhaps wasn't the norm at the time. Due to my OCF Family's suggestions, I pushed for a second course of radiation and my Radiaiton Oncologist stretched protocols at the time to offer this.
Because of this double radiation I am here today. I just had my 5 1/2 year CT post treatment for my Second bout of Oral Cancer and I am 9 1/2 years past treatment for my First oral cancer. No question I would not be here without OCF.
While my cancer was likely due to the more traditional (old school) reasons for Oral Cancer - i.e smoking and drinking alcohol, I have come to be educated and extremely concerned about the rising rates of Oral Cancer due to HPV. This type of cancer appears to hit young people hard and it breaks my heart to think that they could have likely been cured - IF they had known to seek early detection; IF they had known Oral Cancer even existed.
OCF has work to do and it diligently doing anything and everything it can to spread the word. In order to do this - and save many young lives - they need our support.
The Oral Cancer Foundation is THE BEST Non Profit I have ever heard of. No questions about that.
Thank you OCF for my Life. Thanks to you, I fully expect to see my 60th Birthday in March 2014 :)
The Oral Cancer Foundation helps oral cancer patients and caregivers during their darkest days. Invaluable and correct medical info and support is given to those in need. This small nonprofit makes a nationwide presence with campaigns to bring oral cancer screenings and awareness of oral cancer to the general public.
I LOVE, LOVE, LOVE the Oral Cancer Foundation!!! Its is a very small nonprofit that has a worldwide presence. The Oral Cancer Foundation provides factual medical info and support to help oral cancer patients and caregivers. When a newly diagnosed patient joins the online support group, they have found a new "family". Members embrace them and offer encouragement and support thru all their ups and downs. I couldnt think of another organization anywhere that cares for each member like The Oral Cancer Foundation does. Im proud to be a member and also a volunteer.
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 in 2009 after major tongue surgery and returned there this year after a recurrence, another surgery and radiotherapy. My life would be a lot harder if I didn't have the Patient Forum to call on when times get tough. Other patients and dedicated volunteers give advice and support about all manner of treatments, especially radiotherapy which can be particularly dire when directed at the head and neck.
I'm impressed by the overall philosophy and tone of the site. The Forum is beautifully moderated and newcomers are welcomed with sympathy and ready answers to their questions.
It's also heartwarming to feel a link to oral cancer patients all over the world. No one wants to join the oral cancer community but if your life takes this path, the Oral Cancer Foundation makes it so much more bearable.
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 .
Just a fabulous site. When we got the diagnosis of base of tongue cancer we knew absolutely nothing about this type of cancer and how it was treated. . I literally learnt everything I needed to know from this site and from its Patients Forum. Far more information and practical help than we ever got from our Oncology team. The support from other Patients and Caregivers was essential to our progress and to my peace of mind.
I simply could not have got through without the support of the Oral Cancer Foundation.
4 years later I am still getting advice and support. I recommend this support site to all.
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 out about the Oral Cancer Foundation when my son was undergoing Radiation treatment for oral cancer. As I waited for my son to get back from his treatment, a young man sitting nearby came over to me and as he left for his own Radiation treatment, he smiled as he bent over and said to me, "Go to the Oral Cancer Foundation. They can help". I think often of this young man often and bless the day he led me to this wonderful organization. I don't know what we would have done without the kind and compassionate and knowledgeable help we received from everyone at the Oral Cancer Foundation. and all its volunteers throughout my son's treatment and beyond. In those early days of my son's recovery, I was online with the OCF many times throughout the day but no matter the time of day or night, there was always someone to help with never ending compassion and practical suggestions. They helped me over and over to help my son recover and to be strong for him. Day by day, I learned how to care for him and through the experience of others who were a little ahead of where my son was in his treatment, I was encouraged and was helped to learn what to expect at each stage. The research that this organization is part of is beyond amazing in what they have been able to do. I am so very grateful to Brian Hill, the founder for creating this tremendous organization.
My son and I found the Oral Cancer Foundation almost 8 years ago when he was diagnosed with Squamous Cell Cancer. Without this organization I don't know what we would have done. We found all the latest information, plus the support and compassion from members who had direct experience with oral cancer. Over the years I've been amazed how this site continues to keep us informed about all the latest research and information on Oral Cancer as well as the technical improvements to the site which makes it even more perfect than it already was! My son is cancer-free now but does have long term issues as many patients do, so we continue to benefit and learn from all the developments and issues related to the effects of radiation treatment which he received. I am so very grateful to Brian Hill, the founder of OCF and to all the wonderful people who make this the great organization that it is.
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.
Over the years OCF has stayed at the head of the pack with new information and a most helpful forum. I have gained a lot of knowledge about head and neck cancers and have made a number of friends. It's so nice to know that many others care when I am in a time of need.
Two years ago when my husband was diagnosed with base of tongue cancer, I was able to get all of the information I needed from the OCF website. I was able to ask doctors pertinent questions and raise questions about issues that the doctors had not thought to inform me about. Time and time again, the treating oncologists congratulated my husband on having a wife who kept on the "straight and narrow," -- something I could only do with the knowledge I got from OCF. My husband's cancer has since metastasized, it has been extremely helpful to me to know that I only have to reach out and the support is there for me on 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.
As a dental hygienist, part of my daily job is to educate patients about oral cancer. The Oral Cancer Foundation has been an incredible resource for vetted, up to date, and reliable information related to trends, risk factors, current research and best practices. After volunteering at community screening events, one of my own family members was diagnosed with oral cancer and I was blessed that I was able to refer him to this foundation as he fought one of the toughest battles of his life. Information he received truly made a difference in his treatment decisions and thankfully he is alive and thriving today! With 24/7/365 access, OCF is truly a top rated non-profit serving the public, patients, and the dental/medical communities!
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!