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.
The OCF is a vital connection for people who find themselves with the numbing news of having oral cancer. It is a lifeline to offer hope, advice, empathy, friends, and to answer the infinite questions, repeatedly, to those diagnosed. There have been invaluable friendships formed among people who have lived through the treatments together and have shared their experience with newcomers. There are truly some "angels" in the forum who have guided the members for years, putting in more time than a full time job, to assist folks through the process of getting to "the new normal". OCF is a Godsend.
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.
At the age of 46, I was diagnosed with HPV related oropharyngeal cancer, and I was stage 4. As a Dental Hygiienist, I had the background to be able to research this insidious disease, which helped to abate my fears. The Oral Cancer Foundation proved to be the most credible resource for me, by providing me with the most current studies, and information. I am so grateful for all the funding they are able to contribute to relevant studies, and the raising of awareness. Moving forward, now that I am over 3 years post-treatment, I send many newly diagnosed patients to the OCF website. I am so happy to be an advocate for raising awareness about this epidemic!
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!!!
When I was first diagnosed with oral cancer I had no idea what it was. The Oral Cancer Foundation's members embraced me and taught me everything I needed to know along with providing me with the emotional support I needed. OCF is a small organization that provides worldwide support for oral cancer patients and caregivers. I consider OCF to be the very best nonprofit out there!!!!
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.
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 :)
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 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.