I found the OCF website after my daughters second recurrence of oral cancer. The knowledge, information and support that I have gleaned from the Oral Cancer Foundation and members has been immeasureable to help understand the foe we were up against. The news does have to get out about this dreaded disease and the aftermath of side affects and disruptions to peoples lives. Go OCF, spread the word.
I am 45 and female No one can describe the treatment for oral cancer and its terrible side affects unless you have been there. i was devastated at the end of my treatment. I had no saliva which to others does not sound to much of a price to pay for your life but you can not talk, eat or stop gaging along with my neck all sunken in and the burn marks on my face from the radiation i went into depression with severe panick attacks. Tonsil cancer is rare and i was given no support from local organizations. no one at my doctors surgery had ever been diagnoised with this cancer. i began to search the internet for other suffers and found The oral Cancer Foudation. i found other suffers and was able to get excellent advice on how to live with the scars and various side effects. The people were fantastic. without them i really dont think i would be here today. There are plenty of cancer charities but oral cancer and head and neck cancers have very little support. You feel totally on your own. The site is easy to use when your brain is all over the place and the advice is quick and caring. i am 2 years 5 months post treatment and do not visit the site that often now as it brings back awful memories when i read patients stories. i have regained some of my life back but have to constantly work at keeping the depression at bay. i hope to one day get my old self back and be able to help others like they helped me. but for now i am trying to keep my mimd on other things. Please recogonise this foundation for the great work that it achieves.
My beautiful young daughter (age 43) fought and finally succumbed to this dreadful oral cancer. Throughout our 2-1/2 year ordeal of surgeries, chemo's & radiations I sought advice and comfort at the Oral Cancer Foundation site. I don't know how I would have made it without the wonderful people who answered my ever question & guided me through the long terrible days and nights. I am now honored to offer my help and support to those who continue to fight the valiant fight against this horrible nightmare of a disease with my experiences. The Oral Cancer Foundation is a multitude of angels waiting here on the internet to hold your hand!
I found the Oral Cancer Foundation website after I had been diagnosed with tonsil cancer. I had just had a preliminary visit with a radiation oncologist. When I saw him, I really knew nothing about the disease and its treatment. By the following week, when I had a preliminary consultation with the medical oncologist, I had learned a great deal about the the disease and treatment protocols. I was able to ask intelligent questions and could make an informed decision about ;the drug to be used in the clinical trial I enrolled in.
When I come to the Oral Cancer Foundation, I was scare, confused and had so many questions. The people at this site helped me so much, They told me the truth and let me know what to expect, they put my mind at ease and helped me get thur it. I looked around before coming here and found this site had the most complete information, that was easy to find and understand. 67 year old female, Oral cancer, in chin and gum area. 39 Radiation and 8 Chemo treaments.
CANCER! What a horrible word. Although I was surrounded by a caring loving husband and family, I felt all alone. I had been diagnosed with tonsil cancer. Following 7 weeks of radiation, with one day each week of chemo, my treatments were complete. I was left with fear, doubt, and questions concerning my type cancer. This was all new to me. Then, thankfully, I discovered the Oral Cancer Foundation web site. How wonderful to know there was a place to go where you actually could correspond with others who had been through practically everything you had in dealing with the disease, but also dealing with the treatment and after effects. It is a privilege to know others have experienced mostly the same things I have, and at least I feel NOT ALONE. GOD BLESS everyone who is part of this wonderful site and I hope it continues forever! Julieann
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.
This was such a helpful site for me to find out in a nonthreatining way what I was facing after my diagnosis. I didn't have all the symptoms but when they did arrive, I knew what to expect and they let me realize that there was light at the end of this long, dark tunnel. It's great to know that you are not alone in this fight and that others have gone before you and survived and are willing to share their pain and triumphs with everyone.
I found the Oral Cancer Foundation to be the most valuable source of information. Information is current and factual. Far more so than traditional patient referred informational sites. Such as cancer.gov, cdc, webmd, medline, ect. Information obtained from The Oral Cancer Foundation allowed a partnership to develop with our treating physcians. Mutual trust developed when the physicians acknowledged and respected our information sources. We were allowed to be part of the decision making process. Knowing the pros and cons of each step and direction of possible treatment is ultimately the responsibility of the patient. We experienced a positive outcome and cancer free now for 4 years.
I found this web site after my 34 y.o. husband was diagnosed with Stage 4 oral cancer. Thank God, he survived. The web site provided me with a trustworthy resource for accurate, helpful information. Even more importantly, they provided me with an opportunity to reach out to spouses, patients and survivors with my questions and my fears. Oral cancer has many cancer-specific problems and questions that general cancer websites could not address. I am incredibly grateful they were there when I needed them.