OCF is the best help for an oral cancer patient. It helped my mother get thru her cancer treatments twice. She has oral cancer again and relies on the members for support. There is so much information on the website, it is very helpful to everyone.
The Oral Cancer Foundation has provided me with valuable information since my husband was diagnosed with oral cancer. The information and resources helped us understand this relatively unknown cancer. The patient/caregiver fourum gives you almost real time answers to any question you may have from people who are or have been dealing with this disease and the side effects from treatment.
I was diagnosed with Oral Cancer in April 2007 and had surgery in June 2007 followed by radiation and chemo. I came across the OCF in my search for information regarding oral cancer. I continue to use the sight and read the forums on a regulard basis looking for more information that may be relative to or help me in my experiences. It's a great site! And everyone that participates in the forum seems to be very caring and knowledgable.
There are currently ~6,150 members of the Oral Cancer Foundation and I am proud to say my member number is #11. I joined the foundation it was in it's formative stages and look where it is today. The forums were of so much help to me, not only by gaining knowledge and understanding of Oral Cancer, but being able to vent and provide experience, strength and hope to others. The Oral Cancer Foundation was and still is my main source of information about the disease, the options for treatment and number one source for support and hope.
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.
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.
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
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.
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.
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