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319 Reviews
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July 1, 2014

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July 1, 2014

I was diagnosed with stage 3 tongue cancer last August. As a 35 year old mother of 3 I was devastated. I of course went on the Internet to learn all I could about oral cancer. I came across this site and immediately felt at home. I was able to get support all during my radiation and chemo treatments. I was also able to relate to others and help with issues as well. I could not have gotten through it without this site!

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

July 1, 2014

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July 1, 2014

Never would I thought my husband would face cancer at the age of 57. What a shock to have oral cancer since he never smoked or drank and it was non HPV. Through this site I have found the information and support that helped me as a caregiver go through this journey of treatment. Often issues would arise from radiation and treatment and I was able to relax and say that is normal from what others had shared of their experiences. There are many knowledgeable people who continue to offer their advice and opinions and share their personal experience. The forum is a place to come to when support is needed from those who have been down the same road because often friends and relatives just don't relate to what we are going through.

Ways to make it better...

If I had to make changes to this organization, I would...

I found it just by accident shortly after treatment began. It would be great if all patients could find access when they are first diagnosed.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

June 30, 2014

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June 30, 2014

In the past month I've been diagnosed with an oral cancer. I began to search for information (in addition to what was provided by my consulting oncologists) and was greatly relieved to find such a great resource as this and so specific to my ordeal. Not merely informational but supportive and caring.

Ways to make it better...

If I had to make changes to this organization, I would...

not change a thing

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

June 28, 2014
1 person found this review helpful

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June 28, 2014
1 person found this review helpful

I was diagnosed with oral cancer back in April of 2014. With very little information on my condition I did a quick online search to try to learn more and luckily stumbled upon the Oral Cancer Foundation. The boards and forums were filled with information and other people in similar situations. When you face something like this it is truly a blessing to be able to get information and talk to other survivors or caregivers and to feel supported from people who fully understand what you are going through. This site provides a wealth of knowledge and hope for people who are diagnosed. I am so glad that I found it as I am sure it would have been much harder had I not been able to get advise and support from those who have traveled a similar path.

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Will you volunteer or donate to this organization beyond what is required of board members?

Likely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

June 28, 2014

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June 28, 2014

I wish I had found the Oral Cancer Foundation before I did, it would have alleviated my suffering greatly.

The amount of "been there, done that" type of information available and freely given by those who have been through this ordeal is both amazing and incredibly useful.

I
continue to suffer from recurrences of the cancer (I'm in my 6th at present) and this organization continues to provide comfort and support from the members to the members, God Bless the OCF and its members!

The Oran Cancer Foundation is an organization that deserves support at all levels!

Ways to make it better...

If I had to make changes to this organization, I would...

I can't think of any improvements,

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

June 28, 2014

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June 28, 2014

As the caregiver to my husband, diagnosed 6 years ago with stage 4 base of tongue cancer, the Oral Cancer Foundation was my most important resource for information and support, outside of his physicians. I could even make the case that medical information, without support from the OCF, would not have been as successful.

It is almost impossible to explain how grueling the treatment for oral cancer was to complete. Once completed, we still needed help with numerous difficult side effects of the treatment. Six years post-treatment, I still rely on the information and member forum section of the OCF.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

June 28, 2014

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1 previous review
November 20, 2012

My husband was recently diagnosed with base of tongue cancer. While his doctors and nurses have been extremely kind, there's no way they can spend the kind of time answering all my questions about th... more

June 28, 2014

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

November 20, 2012
1 person found this review helpful

My husband was recently diagnosed with base of tongue cancer. While his doctors and nurses have been extremely kind, there's no way they can spend the kind of time answering all my questions about the illness, treatment options and care-giving tips. I was lucky to find the Oral Cancer Foundation website where I can read about the experiences that others who have been through a similar experience and to learn from their insights. Coping with cancer is hard, but it is good to know that I am supported by a circle of friends who understand and care on the Oral Cancer Foundation website.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 28, 2014

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3 previous reviews - show all
October 5, 2013

When my son was first diagnosed with oral cancer, I was filled with anxiety and worry over what was happening to him. Searching online only frightened me more until I found the Oral Cancer Foundation... more

June 28, 2014

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Cannot think of a single thing that needs changing - just the continuing wonderful caring and informational support given to anyone and everyone who comes to the Oral Cancer Foundation.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

October 5, 2013
1 person found this review helpful

When my son was first diagnosed with oral cancer, I was filled with anxiety and worry over what was happening to him. Searching online only frightened me more until I found the Oral Cancer Foundation soon after his surgery and just as he started Radiation Tx. Throughout his treatment, I found a wealth of of all the latest information, compassion, and practical advice but even more, I found hope, and this kept me going throughout the incredibly brutal treatment my son suffered through on his road to being "cancer-free". My son is now 7+ years cancer-free but I am still with the Oral Cancer Foundation, trying to give back a little of what we received. I continue learn and be amazed at everything that is going on with the latest research and all the great individuals who share their knowledge and support with others.

Ways to make it better...

If I had to make changes to this organization, I would...

No changes, just more of the same great attention to research, awareness, information and compassionate support!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

April 9, 2013
1 person found this review helpful

When I found the Oral Cancer Foundation, I was sitting in the Radiation waiting room, feeling alone and scared and worried about my son who was in the Radiation room, strapped down to a table with a mask holding his dead in position and receiving his Rad Tx. Another young man just my son's age was called to receive his treatment, but as he passed by where I was sitting, he bent over and whispered to me "Go to the Oralcancerfoundation.org. They will help". And they indeed helped my son and me in every way possible - with the most recent accurate information available, plus the compassionate support from other survivors, sharing their own experiences and giving us hope, helping us daily and often several times a day. That was 7 years ago and my son is now cancer-free! I will never forget the young man in the waiting room who led me to the Oral Cancer Foundation. I continue to stay with this great organization to try to give back to others, the compassionate support and hope that was given to us.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

November 20, 2012
1 person found this review helpful

When my son Paul, aged 33, a non-smoker, was first diagnosed with Squamous Cell Cancer, I was so anxious, it took me three days after his diagnosis before I could bring myself to punch the words “Squamous Cell Cancer” on my laptop and everything I saw on the internet frightened me and left me more confused than ever. Somehow Paul got though surgery and had started his Radiation treatments. Then, one day as I sat in the Radiation room waiting and worrying about what was coming next, a young man sitting next to me, bent over and softly said to me, "Go to the OralCancerFoundation.org" - and that was the start of hope, knowledge, compassion and surviving cancer for my son and for me as his caregiver. At the Oral Cancer Foundation I found all the latest in accurate information, plus great suggestions from compassionate people who, with their knowledge and experience helped us every step of the way. I came to them many times every day and there was always someone there to listen, to offer helpful suggestions and to point me in the direction of accurate information no matter what time of day or night it was. That was more than six years ago and my son is doing just great, now. I still visit the Oral Cancer Foundation Site several times a day and try to pass on to other caregivers and survivors what I’ve learned from the Oral Cancer Foundation and to keep learning and increasing my own knowledge base in the fight against Oral Cancer so that some day we can make Oral Cancer history.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 28, 2014

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June 28, 2014

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.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

June 27, 2014

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June 27, 2014

The Oral Cancer Foundation (OCF) is the very best small nonprofit! They help thousands of oral cancer patients and caregivers with their online forum. The OCF helps educate the public with awareness walks and oral cancer screenings. If all that isnt enough, they fund research projects to help make oral cancer discovered earlier and easier treatments for patients. The Oral Cancer Foundation is a wonderful organization that makes the most out of every cent. They could give other groups a real education on what a nonprofit is supposed to represent.

Ways to make it better...

If I had to make changes to this organization, I would...

nothing

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

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