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318 Reviews
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July 4, 2014

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1 previous review
October 8, 2013

Even two years after treatment I visit the site several times each week. The community is so sincere, compassionate, and helpful to anyone struggling to deal with this terrible disease. Until a cure... more

July 4, 2014

OCF is a great community for anyone impacted by oral cancer. Every day OCF replaces fear and despair with information and hope. Best of the best nonprofits.

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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?

2014

October 8, 2013

Even two years after treatment I visit the site several times each week. The community is so sincere, compassionate, and helpful to anyone struggling to deal with this terrible disease. Until a cure is found it is the folks from the Oral Cancer Foundation that will help anyone with the daily questions and struggles. For most people it is so great to connect with others who have already been there, and can reassure you the battle is worth it, and there is still a lot of life to live ahead for you... God bless 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?

2013

July 2, 2014

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July 2, 2014

As a caregiver to someone with oral cancer, I have relied heavily on the OCF forum for support and guidance during and after my husband's treatment. There is no substitute for being able to immediately talk with hundreds of others who have gone through the process before you, and to have this forum available 24 hours a day. I am extremely grateful for the support I have received at all hours of the day and night. I would have felt much more alone and in the dark if I had not found this organization.

Ways to make it better...

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

I can't think of anything I would want to change, other than making more people with oral cancer and their caregivers aware that it exists.

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

July 2, 2014

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July 2, 2014

Great information on head and neck cancer! Provides support for patients before, during, and after treatment. They do good work.

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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?

2014

July 1, 2014

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July 1, 2014

On April 23, 2008, I was diagnosed with squamous cell carcinoma on my left lateral tongue. Recommended treatment was a partial glossectomy with reconstruction, neck dissection and 7 weeks radiation with concurrent chemotherapy. Yea, it was all Greek to me too! But with the help of the Oral Cancer Foundation and in particular, the user forums, I was able to navigate my treatment and nearly 6 years after treatment, I'm still here and thriving. I cannot begin to imagine where I'd be, or *how* I'd be without the resources and support I found at OCF.

Ways to make it better...

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

Let more people know about it!

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

July 1, 2014

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3 previous reviews - show all
October 4, 2013

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 aspec... more

July 1, 2014

I began this journey July 18, 2003. There is so much to learn and the medical community doesn't manage the side effects of treatment well. Through the Oral Cancer foundation, I have met thousands of people and almost all of them have had suggestions as to what worked best for them. Because of the randomness of recovery, this information proved valuable to me back then and continues to.

I believe the Oral Cancer Foundation provides the most science-based evidence possible to help disseminate all the complexities of treatment.

Ways to make it better...

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

Provide unlimited funds.

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 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.

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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?

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

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.

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 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

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

more

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

more

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

more


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.

More feedback...

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

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