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287 Reviews
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October 4, 2013
1 person found this review helpful

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October 4, 2013
1 person found this review helpful

This forum is packed with an amazing amount of information and most importantly an incredible group of support members, who have all lived through it or been a caregiver. I found it at a very scary time, and it helped me get through it.

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Will you volunteer or donate to this organization?

Likely

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

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October 4, 2013

When I was given confirmation that I had HPV+ cancer on my tongue and neck I had no idea of who to turn to for support and information. My medical was top notch and leading research on my cancer. They gave me as much information as possible. I wanted someone who had gone before me to guide me through treatment. I hit this site and was given every item of information I needed from those who went before me and found the encouragement I needed to persevere and come out of my trials. I am 11 weeks post treatment and have a family on this website.

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?

2013

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

more


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

more

October 4, 2013
2 people found this review helpful

When my sister was diagnosed with oral cancer she found it very difficult to share her problems and concerns with her family or friends as she felt they did not understand what she was truly going thru. She turned to the oral cancer foundation for understanding and support. She was able to share her fears, learn how to manage her treatment, and speak honestly and openly with what went from complete strangers to true friends. No other organization gave her the sense of self that this organization did. No one else shared their personal history like the members of this organization did. She was never alone as long as she had access to her computer. I could never thank this organization enough for what they gave her.

Ways to make it better...

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

Help them get the word out that they are there for those who have been diagnosed with this terrible disease.

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
2 people found this review helpful

more

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

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