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287 Reviews
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October 4, 2013

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1 previous review
April 7, 2013

OCF is the best resource available online for all people wanting to know more or are dealing with oral cancers. It is focused on this type of cancer and has many VERY first person experiences about al... more

October 4, 2013

Forum is filled with great amount of real first hand cancer experience. Best place to ask and get direct and honest answers and guidance thorough diagnosis, treatment, and post-treatment issues.

Ways to make it better...

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

increase awareness to more involved with oral cancer.

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

April 7, 2013
1 person found this review helpful

OCF is the best resource available online for all people wanting to know more or are dealing with oral cancers. It is focused on this type of cancer and has many VERY first person experiences about all facets of diagnosis, treatment, and post treatment stages.

You get the real deal here:
no sugar coating, over the top high fives, or lack of scientific and medical substance. You can be assured what is being posted is backed up by real experience or references to clinical trial results or other reports published by professional peer review journals.

Brian, Eric, and other key forum members are always watching and weigh in on topics that can use the voice of wisdom and experience.

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?

2013

October 4, 2013
1 person found this review helpful

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October 4, 2013
1 person found this review helpful

The Oral Cancer Foundation has the best up to date educational information. When my husband was diagnosed, it was a relief to find it, so that I could educate myself and be an effective advocate for him.

It's forum site is a life saver for exchanging experiences. It provides a place to
give and receive advice and support to patients and caregivers.

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

October 4, 2013
1 person found this review helpful

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1 previous review
April 9, 2013

Thanks to everyone at OCF, especially Brian Hill, Christine and Eric. The info and support provided at this site is far above anything else you may read. They help cancer victims and caregivers who ... more

October 4, 2013
1 person found this review helpful

After being misdiagnosed for 6 months, in Dec. 2010 I got the devastating news that I had Stage 3 tongue cancer. I had never known anyone who had this type of cancer, so off to the internet I went. I went ahead and had surgery on 1/3/2011 which got rid of the tumor but left me disfigured and unable to eat or even swallow or speak. It was months later that I finally found OCF. The volunteers and information I found there helped save me. I was at the point where I really was struggling to go on and after reading other survivors' stories, I realized that I had to go on one step at a time and come out the other end of the tunnel...not only for myself but for all of the others who were not going to survive and never had the chance that I had. Thank you OCF..... you people rock !

Ways to make it better...

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

the need additional funding to spread their work even further across the country/world.

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

Thanks to everyone at OCF, especially Brian Hill, Christine and Eric. The info and support provided at this site is far above anything else you may read. They help cancer victims and caregivers who have been dealt the scary diagnosis of oral cancer. They are the best group of human beings who give freely of their time and experience to make the whole treatment regimen a lot easier to bear. I will be forever grateful to them all.

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

October 4, 2013
1 person found this review helpful

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October 4, 2013
1 person found this review helpful

Following a tonsillectomy in Nov. 2007, I was diagnosed with squamous-cell cancer which was under my right tonsil and had spread to some nodes on the left side. This was followed by 7 weeks of radiation with 1 day/week chemo ending in Feb. 2008. At that time, I knew absolutely nothing about oral cancer and fortunately, I found the Oral Cancer Foundation site. This was truly a blessing, because as a member, I was able to correspond with others who had experienced things I was experiencing and I could write questions about problems and what I was going through. Other members would join in immediately with their suggestions and like experiences, and offers of help. I learned far more from the Forum members than I ever learned from my doctors. I always got an answer to my questions from two of the members, Christine and Eric, almost immediately. I thank the good Lord for the work, time, and effort Brian Hill exerts for the Forum as OCF Founder and Director. I would give this organization 10 stars if possible.

Ways to make it better...

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

Everything is covered - no changes necessary.

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

October 4, 2013
1 person found this review helpful

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2 previous reviews - show all
April 9, 2013

As an oral cancer patient (Stave IV twice) I have benefitted greatly from the information provided by the Oral Cancer Foundation. Without them, I would not have sought out a second course of radiati... more

October 4, 2013
1 person found this review helpful

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 :)

Donna Butcher

Ways to make it better...

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

Give it more money so that it could reach more people with information about Oral Cancer.

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

As an oral cancer patient (Stave IV twice) I have benefitted greatly from the information provided by the Oral Cancer Foundation. Without them, I would not have sought out a second course of radiation and as a result I would not be here today writing this review.

The Survivor - Patient
Forum is second to none. The understanding, encouragement, genuine concern and care that I received from the uniquely selfless members of the OCF Forum is beyond anything anyone could hope for from an online forum. Posts and responses are timely, candid, innovative, helpful and occasionally humour. We truly have become the OCF Family and welcome all. I pray that I have able to help another patient who has reached out. We all do what we can and together we are awesome.

Brian Hill, Founder, once stated that while the Foundation requires increasing funding to meet its goals, he would rather have 100 one dollar donations with each of those 100 people learning about oral cancer - than having one person donate $100 - even if the other 99 might also donate. He was trying to clearly show how important the issue of spreading awareness is to the Foundation. If each one teaches one - those 100 people who had learned about oral cancer would grow exponentially and perhaps one day knowledge of this cancer and its early warning symptoms would be as common as the symptoms of the common cold. Questions like "You can GET cancer on your tongue?? will be as outdated as first 'suitcase' cell phones.

I don't remember the details of the day that I became a member of the Oral Cancer Foundation, but I do know it was one of the luckiest days of my life.

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

December 14, 2012

I would not be alive today without this Organizaiton. Through them, their fabulous knowledge of treatment options, I pressed for and received a second course of radiation with my 2nd cancer diagnosis. Had I just accepted anything else, I would not be here today. The awareness work this Foundation does is AMAZING. COMPLETELY AMAZING. They are almost single handedly spreading the word about Oral Cancer. To show how devoted this organization is to AWARENESS, I was once told that even if I didn't raise a cent for them - if my fundraising efforts included a message to make sure people get checked for oral cancer - whether they donate or not - they would be happy. The very fact that the word had spread was enough for them. DID I SAY AMAZING??

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

October 4, 2013
2 people found this review helpful

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October 4, 2013
2 people found this review helpful

My husband was diagnosed with Tonsil Cancer, Stage III in May of 2013. Thanks to this wonderful group of survivors who supported us through each scary step of his treatment. Although the Oncologists had given us general information and statistics for this type of cancer and it's treatment (radiation/chemo), to receive information from wonderful people who have survived this Cancer made ALL the difference in accepting vs. being proactive in this journey, being hopeful vs hopeless.
Because of suggestions and encouragements from this group (and despite the damage and post-treatment effects of radiation), one month out from treatment, my husband is almost at 100% - working full time, eating and swallowing, traveling, SURFING! We are a grateful family, to have this kind of hand-holding, during an extremely tough time. Aloha....

Ways to make it better...

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

I would suggest that more doctors tap into the real life, real time information that OCF provides, to encourage their patients. We stumbled into this online forum, but it would have been so much more helpful if in the beginning, doctors would have steered us to this support group.

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

October 4, 2013
2 people found this review helpful

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October 4, 2013
2 people found this review helpful

This site, the people that run it and the support it gives OC patients like myself is invaluable! It's hard enough to deal with a cancer diagnosis, treatment and recovery. I can honestly say OCF has made my journey with cancer one that I can now navigate.

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

October 4, 2013
3 people found this review helpful

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2 previous reviews - show all
April 7, 2013

I found OCF while recovering from treatment for Stage IV Squamous Cell Carcinoma, BOT in 2003. I have met many people that have or will experience the complexities of treatment and the brutality/toxic... more

October 4, 2013
3 people found this review helpful

As a 10 year survivor of oral cancer I must say that this journey was made much more tolerable thanks to the OCF community. Not only providing the most accurate, science-based information on any aspect of oral cancer, OCF is diligently educating dental professionals in techniques and information sharing to strengthen the front line battle against this life changing disease.

In addition OCF has provided an on-line community of approximately 9,000 registered users that are either oral cancer survivors, family and/or caregivers with hands on experience in dealing with the diagnosis through post-treatment issues.

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 7, 2013
1 person found this review helpful

I found OCF while recovering from treatment for Stage IV Squamous Cell Carcinoma, BOT in 2003. I have met many people that have or will experience the complexities of treatment and the brutality/toxicity that brings with it new challenges. OCF is not only a community of survivors and caregivers but the most informative site for all facets of oral cancers.

More feedback...

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?

2013

July 28, 2009

When I was diagnosed with Stage IV Oral Cancer in 2003 my life changed and honestly, it has not stopped changing. I have yet to find my "new normal" as we call it. I became active on the forums that were provided by the Oral Cancer Foundation and met literally thousannds of people that had experienced pretty much the same thing as me only with personalized time frames. As trite as it may sound, I don't know how I would have made it to where I am today without the resources, the friends and the incredible website Brian Hill self-funded to start it up. I go to Health Fairs and represent the Oral Cancer Foundation and if I was in a little better health presently, I would be organizing a walk to raise money during Oral Cancer Week next April.

The Great!

I've personally experienced the results of this organization in...

Bringing people from all over the world to one place that is the singlemost comprehensive resource website for oral cancer as well as providing a place where hundreds walk through the cancer journey with you, letting you know what is around the corner.

Ways to make it better...

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

...not change a thing!

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The tenacity of Brian Hill and how he singlehandedly made this happen with hundreds of thousands of dollars out of his pocket to promote early detection which increases your chances of survival from 25% to 90%.

The kinds of staff and volunteers that I met were...

Incredibly devoted to helping people with this horrible disease and willing to put in the hours needed for nothing in return, monetarily.

If this organization had 10 million bucks, it could...

Reduce the death rate of oral cancer significantly. In addition, more research could be directed towards early detection and treatment alternatives.

Ways to make it better...

Brian Hill had an entire staff instead of an army of one for so long and financial backing.

In my opinion, the biggest challenges facing this organization are...

The low incidence rate of oral cancer versus breast cancer, for example. It is hard to fund and support groups that are trying to get the word out on early detection and keep up with treatment technology when there are only 35,000 "victims" a year.

One thing I'd also say is that...

My life was transformed by finding the Oral Cancer Foundation.

When was your last experience with this nonprofit?

2009

October 4, 2013
2 people found this review helpful

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October 4, 2013
2 people found this review helpful

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!!!!

Ways to make it better...

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

donate a million dollars to help fund research studies to find a cure for oral cancer.

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 29, 2013
1 person found this review helpful

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1 previous review
July 29, 2009

In June 2005 I got the devastating news that I had oral cancer. Since I never used tobacco products of any kind, this was not a cancer that I worried about or knew much about. I had so many questions... more

April 29, 2013
1 person found this review helpful

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!

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

July 29, 2009

In June 2005 I got the devastating news that I had oral cancer. Since I never used tobacco products of any kind, this was not a cancer that I worried about or knew much about. I had so many questions and decisions to make in a short period of time. Unfortunately very little information was readily available nor was I able to find any support groups to guide me through the process. I relied heavily on my team of doctors to get me through this and fortunately they did, but what I also needed was to talk to someone that had been through this before and a reliable source of “all you ever needed to know about oral cancer”. The Oral Cancer Foundation was the answer to my prayers. Months after my treatment began I was directed to the OCF website. The information contained on the website has proven to be the most comprehensive, accurate, and up-to-date source that I have found on all aspects of this devastating disease. And the “Survivor / Patient Forum” is in my opinion the best support group out there for oral cancer, or for any type of cancer. With over 6,000 members from all over the United States and many foreign countries you have access to a “24x7” support network that consists of survivors and caregivers who are knowledgeable, compassionate, and more than willing to help those facing this disease and life altering impact of the treatments used to stop this killer disease. I and all members of the OCF community are extremely grateful for the efforts of Brain Hill, the OCF founder and an oral cancer survivor. Without his efforts many of us would have been left to travel this road scared and alone. THANK YOU BRIAN AND OCF!!

The Great!

I've personally experienced the results of this organization in...

the support and advice given to newly diagnosed oral cancer patients and caregivers via the survivor/patient forum.

Ways to make it better...

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

not change a thing.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

having had the opportunity to speak with the Brian Hill, the founder, a number of times and I’ve learned first hand how dedicated he is to fighting this disease and how much he has single handedly accomplished on such a small budget.

The kinds of staff and volunteers that I met were...

extremely dedicated, caring and knowledgeable.

If this organization had 10 million bucks, it could...

continue its great work including sponsoring more research on finding a cure and offering more free oral cancer screenings.

Ways to make it better...

I had found OCF ealier.

One thing I'd also say is that...

funding to support additional research, screenings, and maintaining the outstanding website and support forum.

When was your last experience with this nonprofit?

2009

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