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July 29, 2009

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July 29, 2009

In the past six years I have had been treated for three unrelated cancers, kidney, oral and breast, all requiring surgey with the breast cancer requiring radiation. I had a potentially serious gastric problem treated and was diagnosed with beginning glaucoma. Both my husband and I cataract surgery and my husband had surgery for colon cancer. This year I had a very complicated reconstructive surgery for the portion of my mandible removed due to the oral cancer. This week marks 3 years since I had surgery for removal of almost half of my lower jaw with the teeth. Thanks to the vigilance of my dentist and oral hygenist the cancer in my jaw was discovered at a very early stage and I required neither radiation nor chemotherapy. Previous to the surgery my husband and I weighed the options and decided to wait until later to decide about reconstruction. When I determined upon the advice of my dentist to consider reconstruction, I began to research "mandibular reconstruction." I discovered the Oral Cancer Foundation and found both solid medical information and support. I have a scientific background and was very impressed with the technical aspects of the main site. The information, support and inspiration from the forums helped me in my decision to have the surgery. As a result of my contacts with OCF I realized that although I had some minor disfigurement and difficulty in eating,I had been spared the horrendous suffering and possible death from this devistating form of cancer. I decided that I should become a volunteer and became a state co-ordinator. My initial surgery for oral cancer was about a month before Hurricane Katrina hit our hometown - New Orleans. When we evacuated on Sunday to Houston I had only left the house for doctor visits and still had a gastric feeding tube, severe inflamation of sutures on my chin and a fissure in my jaw which required treatment several times a day. I had appointments scheduled that Monday with an infectious disease doctor for my sutures, with the ENT oncologist Tuesday, a swallow test Wednesday to determine if the feeding tube could be removed and with the ENT again on Thursday and probably to have the feeding tube removed that week or the next. I was to see my regular internist the following week. Madam K changed that schedule. I lost contact with my doctors and was on my own. I was fortunate to find the care I needed in Houston but what should have taken a week or two took almost two months and visits to the emergency room and seven doctors. I firmly believe that had I found the Oral Cancer Foundation before this, I would have been in a better position to obtain the care I neeed. I now know that it was beyond fortunate that I did not have serious complications due to the interruption of medical care. The support of the posters on the forums has helped me in my personal life as well. I received moral strenghth when my son was in Iraq. Last year when I found that I had breast cancer which required surgery and radiation the support from the posters on the OCF forums helped me face that without the great fear that I would have had otherwise. I had learned much about the effects of radiation and the fatigue it engenders. From the postings I have been able to recognize and deal with many of the emotional problerms related to cancer which I had attributed to "post Katrina stress." I have learned how to relate to my caregivers and the stress they fell as well. I learned that it is important to participate in support groups as a participant to give and to receive advice and information. I have come to recognize and encourage others, that it is necessary to pay attention to symptoms and have all testings and exams relevant to one's age, genetics, sex, risk factors, etc. and to seek out and insistupon the best best possible treatment.

The Great!

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

Lives saved, emotional and moral support. Reliable information for professionals and laymen. Continued information on developements in the field of oral cancer. Active support of awareness, prevention and research.

Ways to make it better...

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

More feedback...

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

Well informed, encouraging and inspiring.

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

Mount a worldwide campaign to educate the public and medical professionals about the need for early detection and prevention of oral cancers.Fund research.Fund screenings for oral cancer.Promote better financial coverage by insurance and governments.

Ways to make it better...

I had found the OCF website when I was first diagnosed with oral cancer.

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

LACK OF FUNDING.Inadequate education of medical professionals who should be diagnosing oral cancer earlier and treating it better or referring patients to the best available care.Need for worldwide publicity,awareness and prevention.

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

Brian Hill has put forth his fortune,time & heart to inform the public and professionals about oral cancer, encourage research, and help others in their travails with this devistating cancer. Others have joined him but much more help is needed.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

I was diagnosed with base of tongue cancer in 2006. The first comment out of the doctor's mouth was "How much do you smoke and drink?" Stunned from the initial shock, this comment angered me. I was not a smoker or a drinker. I was young and healthy. I exercised and ate right. How could I get cancer? Is the doctor insinuating I am responsible for this? I never heard of base of tongue cancer. Research on the Internet brought more questions than answers. Information on well known and trusted cancer sites often appeared outdated. Then I found The Oral Cancer Foundation web site. OCF's site is laid out in a user friendly fashion. You can dive in as deep as you desire if you are looking for answers. Links are provided to factual and science based studies and protocols. Additionally, and perhaps best of all is the patient forums. Here you will find people who had or are having exactly what you are going through. In my case, it helped a lot to find people my age and with the same type of cancer I had. The support I received as well as the information I got from The Oral Cancer Foundation site alleviated the anger that I had at first. They also gave me the strength to become a knowledgeable patient and proceed with treatment.

The Great!

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

helping initiate ongoing research to save lives.

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 education available and the support freely given.

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

Outstanding.

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

Save many lives and comfort so many more.

Ways to make it better...

I found The Oral Cancer Foundation sooner.

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

the need for massive exposure.

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

The Oral Cancer Foundation is more than worthy of charitable contributions. This is one place where you know that every cent donated is actually doing mankind good.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

Five stars to OCF and they deserve so many more! I found this website when I was trying to find information after my mother was diagnosed with oral cancer. She is still recuperating now from her fourth round with this terrible disease and OCF has become THE PLACE to go for answers to any questions you can think of and for some of the best and kindest support you could ever ask for. The survivors and caregivers on this site are so willing to share their experiences and offer advice. It can be both heartwarming and heartbreaking to read their stories, but we learn from them all. Thank you Brian for creating OCF so it can be there for so many of us and all the wonderful work you do - it is invaluable. Nancy T

The Great!

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

It's truly amazing that people who are struggling and suffering in their fight of this disease are also so compassionate and caring in wanting to help others through their experiences.

Ways to make it better...

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

More feedback...

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

I have only met Brian, staff and volunteers online and by phone. Yet they all are so friendly, helpful and giving - you'd think you'd known them for years.

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

If this organization had 10 million bucks, it could make everyone aware of oral cancer and how very important early screenings and early detection of this horrible disease is.

Ways to make it better...

I'd learned to ask questions earlier - because the answers were there whenever I needed them.

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

The biggest challenge I can see that is facing this wonderful organization is raising enough funds to allow them to spread the word about oral cancer and the Foundation and its work to others.

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

Until you/someone you know is diagnosed with oral cancer, you just have no clue. I'd known one or two people who had it but they were acquaintances and I had no insight into their experiences. Now, going through this with my mother...PEOPLE NEED TO KNOW.

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

Oral Cancer Foundation has been a shining light of support and information in our race against oral cancer. My brother is a victim of tongue cancer and has had 1/2 of his toungue removed along with neck lymph nodes, endured reconstruction, teeth removal, and radiation. As you can imagine, we were overwhelmed with the initial diagnosis in early 2008. What the docters described for treatment was very hard to absorb. We googled oral cancer and we found the Oral Cancr Foundation. We were so relieved to find the oral cancer topics and information so easy to look up and read about in laymens terms. What a wonderful website! The message boards were - and still are - our 'go to' site for all that we now know about this cancer. To actually read other peoples stories and communicate with fellow survivors is invaluable. We get imediate responses to our questions & concerns and found we can share and even help as well. We discovered tips for dealing with the PEG feeding tube, pain managment, healing timelines from procedures, food preparation tips and recipes for getting enough calories drinkable because until dentures, my brother could not chew food. We learned when to get therapy for moving lymph fluids out of neck areas, and when to alert the docters to changes that were of concern. We learned some tips on how to manage stress. I cannot say enough good things about this Oral Caner Foundation website. Thank you Brian for creating it, without it we would have been LOST.

The Great!

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

the excellent website message boards.

More feedback...

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

interaction with fellow cancer victims and learning about oral cancer from Brian's messages to people on the message boards.

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

informative and professional.

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

Spread the word and help with research to find a cure.

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

I learned of my stage 2 tonsil cancer Dec 2003 and found the OCF webstite. It was the best source of information and support that I had. I found several members who had a similar experience that could tell me what was going to happen the impacts, the do' and dont's and what to expect which was very helpfull. It reduced a lot of anxiety and made it alot easier by knowing what to expect and the success of others. Everyone should be lucky enough to have this tool as a resource for any major illness.

The Great!

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

Peoples response to the postings and the releif it gives them.

Ways to make it better...

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

Do what they are doing

More feedback...

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

Information and support from all the memebers

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

None

Ways to make it better...

I could get closer to some of the people that responded to me

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

Getting people to know of the organization

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

I was diagnosed with stage IV tonsil cancer in November 2008 - this web site has been a source of inspiration and hope as well as a resource for helpful information for me and my family God bless you for creatinga nd maintaining this site

The Great!

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

my life. When I was frightened it gave me hope. When I was so sick from the chemo and radiation that I was ready to quit it gave me the strength to keep on. When I was struggling to recover from the aftermath of the treatment it gave me help

More feedback...

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

The diagnosis of oral cancer was devistation to me and my family. None of us had much knowledge or knew what to expect. My treatments immobilized me and my daughter found the OCF and used it for knowledge and also made a lot of friends who were going through similar experiences. The foundation is priceless along with all it's members.

The Great!

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

the knowledge given about this disease.

Ways to make it better...

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

not change anything.

More feedback...

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

the members willing to share their experiences.

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

super! Posts are monitored and if something didn't appear to be correct, the monitor gave his opinion.

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

Advertise. I'm sure there are a lot of people who would benefit from the knowledge shared.

Ways to make it better...

I learned about this site earlier,

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

getting the word out.

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

I appreciate the help this site has given me and my family.

When was your last experience with this nonprofit?

2007

July 29, 2009

more

July 29, 2009

When my husband was diagnosed with oral cancer in 2007, we were confused and devastated. I searched the internet for information and found myself coming back again and again to the OCF web site. The information I found there was invaluable. I turned to the Forums when he was undergoing radiation, and found many helpful suggestions for making his journey a little less devastating. We have found practical advice and comfort in the words of fellow survivors on the OCF Survivor/Patient Forum.

The Great!

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

providing help to people at a very frightening time in their lives.

More feedback...

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

I am a caregiver to my wife who was diagnosed with oral cancer one year ago. I found the OCF website in the middle of the night while searching for answers. It has become the first place I turn to when facing new symptoms, problems or concerns. There are many available to offer answers and support as unfortunately, they have experienced the same situation in the past. I am far from any type of medical expert but thanks to others at the OCF, I can understand what my wife is dealing with and has in her future. Although my wife is losing her battle with this disease, OCF has helped ease some of the pain. I only hope that I can have the strength that those at OCF demonstrate helping others after experiencing the pain.

More feedback...

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

caring, knowlegeable, concerned and willing to share their experiences and feeling during difficult times.

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

My first bout with cancer was 2004, then 2005/2006 I found Oral Cancer Foundation in April of 2006. I was so thankful for this site. It helped me to understand what I had been through, & learn more of what was to come. If it was not for OCF I would be scared to death!! Instead I am well informed and supported by others. I also have the chance to give back to others as well. I encourage anyone with Oral Cancer to contact OCF for good information and support. I am proud to be a Member of OCF.

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...

The support of everyone.

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

Have not met, but have heard from.

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

Reach out much farther !! Help many more cancer patients!! Also more research.

Ways to make it better...

I had found this organization sooner. I would have learned about my cancer and what to expect.

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

OCF is the Best and deserves the 10 million!!

When was your last experience with this nonprofit?

2009

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