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!!!
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!!!!
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.
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.
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.
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!
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!
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!
The Oral Cancer Foundation is the best source of information and support for those impacted by oral cancer. When I was first diagnosed with oral cancer, I knew nothing about it and had so many questions. Eventually I found the OCF website and it was just what I was looking for! Reliable, accurate and updated information on oral cancer which answered all the questions I had and was unable to find the answers for elsewhere. Also, the on-line support group is the best – 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.
I found the OCF website shortly after being diagnosed with oral cancer. The information provided on their website was very helpful when I was trying to grasp the enormity of the diagnosis. The Survivor/Patient Forum was an invaluable resource for both information and support. It is extremely difficult to sift through all the information that's thrown at you while still reeling from the news that you have cancer. The foundation provided me with the information that I needed in a clear, concise format that was invaluable at the time. The forum provided me with a place to talk with people who understood what I was experiencing. I was relatively young and had a new baby when I was diagnosed. The forum allowed me to meet and talk with other women who were in similar positions. I can't overstate the impact that had on me. It was such a gift to know that I wasn't alone.
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.