The Oral Cancer Foundation
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I have been visiting this site for 5 years now and I still am learning about my cancer. The site is extremely user friendly; it's free and you can get an answer to any question or just complain about how you feel 24/7. I have talked to thousands of people over the years and have actually met many in person. The bonds you can create while helping one another whether you are the patient; the caregiver or a concerned family member are priceless. I truly believe that this site is as valuable as the physical treatment itself.
The Great!
I've personally experienced the results of this organization in...
Knowledge gained and helping others.
Ways to make it better...
If I had to make changes to this organization, I would...
find a cure for this cancer and eventually do away with this site.
My mom has tongue cancer. She has been treated for it twice - Stage 1V bot times. The treatments have been just brutal but she has gotten through them. I know she has gotten alot of information from this website and made friends from it. It has given her alot of ideas about what to expect and what questions to ask the doctors.
The Great!
I've personally experienced the results of this organization in...
My mom seems to get alot of good information from the site. I know the last time she had cancer they were not going to do radiation again, but she read something about getting radiation more than once on that website, and they considered it and did it.
Ways to make it better...
If I had to make changes to this organization, I would...
Tell people not to smoke and not to drink diet drinks. I firmly believe that these two things were what caused my mom's cancer. I think there should be more information available about tongue cancer. No one had ever heard of it before my mom got it.
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What I've enjoyed the most about my experience with this nonprofit is...
I think my mom gets alot out of belonging to this group. That has made things easier for my dad. I no longer live at home so he has done most of the taking care of mom.
If this organization had 10 million bucks, it could...
Tell people what the dangers and risks are for tongue cancer are. I also think they should fund a study of the link between diet drinks and cancer.
Ways to make it better...
I would have liked to know and still would like to know what Stage 4 means. My mom seems to be doing okay right now - she is very very tired and can't speak. When I told my friends that my mom's cancer was Stage 4 they were very scared for us all.
In my opinion, the biggest challenges facing this organization are...
Telling people what the dangers are and how to avoid what my mom has gone through.
One thing I'd also say is that...
This cancer has changed all of our lives. The effects on my parents as well as my brother and I have been huge. I wish things were the way they used to be.
When was your last experience with this nonprofit?
2009
I've been a smoker for 8 years now and it's probably the hardest thing I've had to endure throughout my hardships with life. Although I had quite for 2.5 years straight, I find myself today still lighting up. Each morning I wake up and cough for about a good minute, which is no way to start off your day. Since my personal friend Megan Cannon at OCF has informed me about the risk to my health, and her extreme concern for every individual that is putting themselves at risk from smoking, she has giving me the will to cut back and be more aware of how much I smoke. Today I am down to 4-6 cigarettes a day (sometimes more, sometimes less) from my 1 pack plus a day. Megan is perfect for OCF and their cause. Not only has OCF helped me, but through watching Megan inform and help so many others (people all alike) she has helped me to live a healthier life. So I want to say Thank You to Megan Cannon and OCF for their support.
Ways to make it better...
If I had to make changes to this organization, I would...
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
How friendly and informative they are, their level of care and concern for everyones health
Ways to make it better...
I had more real visual examples of the effects of cancer on my body
When was your last experience with this nonprofit?
2009
Oral Cancer has been and still is one of the orphan cancers. Not many people know that oral cancer kills one person per hour,everyday 24 hrs a day. I did not know this eventhough I have been in dental field for quite some time now. I came to know about this from the facts and stats put together by the oral cancer foundation. That was an eye opener. I came to the OCF web page while I was looking for information to help my sis, when got diagnosed with cancer of oropharynx. The information on this website and in the forums has been great help in going about the treatment and locating the resources. This is my personal experience. and the people at the OCF are amazing, everyone truly wants to help and lower the mortality rate associated with oc by raising awareness and helping people by giving them much needed information. Without the Oral Cancer Foundation there would not have been any awareness about the death rate and devastation it's causing in the world. The OCF has forums are extremly helpful & support those who suffer the burdens of the disease. The Ocf has made the research efforts possible to identify HPV as a cause of oral cancer, I think which is remarkable. OCF is the best source of information & facts about the oral cancer on the web,period. I believe the oral cancer community would be worse off if Brian Hill or oral cancer foundation will not be there to create awareness and inform everyone about oral cancer.
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The Great!
I've personally experienced the results of this organization in...
many wonderful people's lives,whom I have come to know thru' OCF & in my own life.
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What I've enjoyed the most about my experience with this nonprofit is...
-The well of information. -Truly helping people.
When was your last experience with this nonprofit?
2009
I love OCF. It is what has gotten me thru two round of oral cancer. The members are intelligent, caring and just plain amazing!!
The Great!
I've personally experienced the results of this organization in...
how the forum members rally together to help each other.
Ways to make it better...
If I had to make changes to this organization, I would...
More feedback...
Ways to make it better...
oral cancer was eliminated.
When was your last experience with this nonprofit?
2009
The Oral Cancer Foundation has helped to give my husband new meaning to his life. Since his bout with Oral Cancer he spends a great deal of time helping others that are going through treatment. I know that he greatly values the friendships he has developed with other members of the OCF.
The Great!
I've personally experienced the results of this organization in...
how motivated my husband is to help others that have oral cancer.
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If this organization had 10 million bucks, it could...
expand the wonderful work that it is already doing.
When was your last experience with this nonprofit?
2009
My name is Gerry.I am 51 and got Tongue Cancer in 2000. I have had multiple surgeries on my tongue w/ life altering consequences. I had a recurrence in 2007. OCFoundation has helped me tremendously. The site is a wealth of REAL facts. The news feed is A+. I check in with it weekly to stay updated on this rare cancer. The Drs could not possibly do this for me today. But most important, the support from the others who have endured this awful disease has been too valuable to detail here. One of my very best friends in life I met on this site. We have not met in person yet. But we met here about 4 years ago and the bond I share with her is one of the greatest gifts in my world. I am so thankful to the OCFoundation.
The Great!
I've personally experienced the results of this organization in...
My knowledge about Oral Cancer and how it is dealt with by other survivors and their families. It is invaluable information in a monitored and safe system.
Ways to make it better...
If I had to make changes to this organization, I would...
Do exactly as Brian Hill has. He is awesome!
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
My friendship with another survivor that was started on this site.
The kinds of staff and volunteers that I met were...
I have not been able to meet face to face but on line and on telephone, all are terrific and totally professional.
If this organization had 10 million bucks, it could...
Help many survivors to get better and to feel whole again and to get educated about cancer and find ways for themselves to be proactive too and not be pushed around by the system....
Ways to make it better...
I had more personal spend time on-line...
In my opinion, the biggest challenges facing this organization are...
The fact that Oral Cancer does not get the attention it deserves in the media or in funds for research and overall care.. This is a DEVASTATING illness that is not brought out in to the light enough......
One thing I'd also say is that...
I am soooooooooooooo grateful for the Oral Cancer Foundation!
When was your last experience with this nonprofit?
2009
I am mainly an in the background type person and I was a friendly caregiver to my boss who had a FT caregiver so I helped out when I was needed. Without this site I wouldn't have understood what my boss or his wife were going through so it was priceless when I needed it. I continue to visit from time to time and I just find the people amazing in their desire to help others that are about to go through their fight with oral cancer. Anyone who thinks or knows they have oral cancer would benefit greatly by logging on to this site.
The Great!
I've personally experienced the results of this organization in...
the people who post on it
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 tremendous amount of information available and the experienced posters that are always helping others in need.
If this organization had 10 million bucks, it could...
funnel that money to the most worthy research projects available
Ways to make it better...
my boss would not have had cancer
One thing I'd also say is that...
great great site
When was your last experience with this nonprofit?
2009
I found the OCF site 15 years after I was diagnosed and treated for squamous cell tongue cancer. My diagnosis had come as a complete surprise, as I had never smoked and had been told by multiple doctors that I was not at risk for oral cancer. Long after my experience with it, I was actually looking for good resources for a couple of friends who had been recently diagnosed, and was amazed at the amount of current, relevant information that OCF had to offer -- far beyond what I could find on other cancer-related sites. If anything like this had existed when I was undergoing treatment, it would have been an enormous help and support to me. As someone who went through major oral surgery and weeks of radiation without the benefit of OCF's support network, I can appreciate how much this site can provide to someone facing this disease.
The Great!
I've personally experienced the results of this organization in...
the way it has allowed people from all over the world to share their questions and their experiences with oral cancer and to strengthen their resolve to fight it.
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The kinds of staff and volunteers that I met were...
unselfish, and deeply concerned about the problems of those on the forum who needed to 1) get an accurate diagnosis, 2) make an informed decision about treatment, and 3) deal with the pain and other side effects of battling this illness.
If this organization had 10 million bucks, it could...
do an even better job of helping more people to recognize the early warning signs and hopefully get a timely diagnosis to improve their chances of long-term survival.
When was your last experience with this nonprofit?
2009
I joined the OCF Survivor Forum in November of 2002, well before my treatment started, and the members of the forum there, and also information on the main site, helped me in ways that are unmeasurable. I have made many friends in all areas of the world and stay in touch with many of them to this day. Back in November of 2002 there really weren't any other oral cancer sites like OCF and there still isn't today. I have been honored to give back on the forum, what was so freely given to me. It has been a life altering experience for sure. I am certain that advice that I received there has helped me to survive the horrors of cancer treatment and it's aftermath. I have 6 years of being cancer free today and OCF was a major part of that. Conversely, it saddens me that I have lost so many friends to this horrific disease.
Photos
The Great!
I've personally experienced the results of this organization in...
feedback frrm people that have been helped.
Ways to make it better...
If I had to make changes to this organization, I would...
go crazy fighting an uphill battle all of the time for funding.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
the diversity of people and cultures and the commonality of our plight.
The kinds of staff and volunteers that I met were...
compassionate, caring and dedicated to serving others.
If this organization had 10 million bucks, it could...
fund basic cancer research.
Ways to make it better...
less people had died.
In my opinion, the biggest challenges facing this organization are...
finding the funding to keep it alive.
One thing I'd also say is that...
The forum has grown by over 6,000 members since I joined.
When was your last experience with this nonprofit?
2009
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