This site is very encouraging! If I can help, let me know. I'm a 37 year old survivor (former smokeless tobacco user) diagnosed Sept 18 2000. My dentist first spotted something in May but I did not follow up until August. Luckily, things had not changed much in 3 months, he referred me to an oral surgeon who took a biopsy on Sept 11 and gave me the news on Sept 18. My cancer was diagnosed as stage 1 squamous cell carcinoma. I was treated (surgery only) at the University of Minnesota by an ENT, who has been great. I had a portion of bone and three teeth removed from my upper jaw. Within the next couple of months I am going to have bone grafted from my hip to replace the removed bone, then several months later I will have dental implants put in. Any words of wisdom on bone grafting would be appreciated, and I will also try to answer any questions that anyone may send my way.

Thank you for joining our discussions. I believe that you are the first chewing tobacco person to post here. Just a word of encouragement.......I spent much of my adult life in the dental implant industry. The techniques for bone grafting and the subsequent placement of titanium implants are highly successful. Most of the implant manufacturers in the US marketplace show success rates for their products in the 97% range. Of course the success is dependent to some degree on the skills of the surgeon, and the quality of the bone that the implants are being placed in. I would be glad to answer any questions you have about this portion of your experience, I have lectured on implants at universities around the world. I would be interested in hearing more about how and why you started using tobacco this way, and hearing about your progress as you go through the reconstructive process. Please e-mail me directly if you like, or post your response on the board, I check it daily. You are one of the lucky ones. Catching things at a stage 1 is the best of all possible scenarios...... separate from not getting this in the first place. You should really thank your dentist, I have heard too many stories about those that missed the cancer or treated the suspect tissue with watchful neglect until it was a major problem. If you think of it, have him contact me, I'd like to talk with him.

You're right, I do owe my life to my dentist and I've certainly let him know that's how I feel. I neglected to mention that when he first spotted the sore, he asked me to come back if it doesn't heal within 2 weeks (just like all the literature I've read say's he should). The nurse at the University hospital I went to said something that has stuck with me, "We can catch a cold or flu and feel absolutely miserable and the cold/flu is just an short term inconvenience, but often when we see cancer patients, they initially have no discomfort or pain as the cancer grows and spreads in their bodies, and often when the pain and discomfort do appear, it is too late to do anything about it." It was by the grace of God that even though I procrastinated for 3 months, my cancer did not grow significantly or spread. I appreciate your words on implants, my main concern with reconstruction is the harvest of the iliac crest bone and the subsequent healing. I hate to make my quality of life worse by undergoing elective surgery. If you or anyone else has experience with the healing and recovery of a graft harvest site, I'd certainly be interested. As for my nicotine (chewing) habit, I started in college while I studied mostly. The occasional use eventually grew to a constant habit. My wife would show me articles from newspapers and magazines but of course it would never happen to me! I'll mention your interest to my dentist next time I see him, he has diagnosed 2 more cases of oral cancer since he caught mine, prior to that, I think he said he had diagnosed only one case in the past 20 years. Throw some more questions my way if you have them. Thanks again for your forum, this site is fast becoming one of the best on the internet.

Thank you for the kind words about the site, with little external funding, it is at this time, mostly a labor or love. To hear that it is having positive impact is the best of rewards. I can tell you that iliac crest bone is ideal for the situation, and that the site heals rapidly and without much discomfort. It is a common site for harvesting bone, a place you will not notice anything missing from, esthetically or in your physical endeavors. Kudos to your dentist for knowing that anything that dosen't heal in two weeks is suspect. Many do not think of that simple rule. I often say that some treat their paitents with "watchful neglect" while the situation deteriorates to the point at which my gardener could diagnose the cancer.

I was totally focused on my reconstruction over the past month when I began to feel a soreness in the left side of my neck and a soreness when I swallowed. My cancer was on the upper left side of my mouth , so this caused me a great bit of worry. After feeling this soreness for about 10 days, I called my ENT to schedule an appointment, I went in this past Monday and had an exam, his "look and feel" exam detected nothing abnormal. He told me to go ahead with the reconstruction, I really do not know what caused the neck soreness, but it's gone now, fybromyalgia (sp?) is one possibilty. I am planning on meeting with an oral surgeon on March 8 for a preoperative physical and consultation. My surgery is schedule for March 20. I'll update the site on my success/failure. I'm banking on success!

Thanks to all on this information. I have been considering an implant and plan to look into this in early spring. I lost my teeth on the lower left side and had about half of my jaw bone removed. I've had two bridges made and they both really hurt. Keep posting information it is so important to all of us. Anne.

Anne,

I'll post my results and recovery as it progresses. I can't say I'm looking forward to the surgery but it will be nice to have permanent (implanted) teeth in the back of my mouth again.

I had my bone graft done on Wednesday (Mar 20)and was able to come home the following day. Both sites, my mouth and my hip are sore, but I think the hip is more bothersome. My thigh is numb and occassionaly I get sharp shooting pains in my thigh when I move wrong. Both are short term according to the surgeon and should go away over the next several weeks. The pain in my mouth is minimal compared to my initial surgery to remove the cancer in Oct 2000. Now I guess I wait for several months to see if the graft takes. If it does, and the oral surgeon says it has a 90% + chance of success, I should have implants by next fall/winter. My wife/kids have been wonderful throughout and continue to inspire me.

So glad all went well for you. Really happy to hear that the pain was not too bad. Again, thanks for the information and look forward to hearing about your progress. Anne.

Anne,

I apologize for not updating you/the BBoard on my progress but life has been hectic with kids activities and my progress has been slow. My hip is fully healed, I still have some numbness in my right thigh but the Dr. say that should eventually go away. Even if it doesn't it is not a major deal. My mouth has not fully healed, the tissue in the back of my mouth does not want to close over the bone graft. About two weeks ago, a small piece (2mm x 2mm)of bone worked its way out of the sore. The Dr. was not alarmed, they took an x-ray and did a visual exam and said that all looks well. This past week the sore has opened a bit more and I have a small ridge of bone exposed. Another reason I've hesitated to post again is because I don't have a definitive answer to how all this will turn out. I will update again when I know more. I also visited my ENT last week and he said that the Oral Surgeon did a good job on the reconstruction. I mentioned to him that I was worried about this sore in my mouth that has not healed (> 2 weeks) He said that he is not alarmed and that all looks well.

Stefon, I have my bone graft surgery scheduled for June 10, 2002. My doc is going to take the bone from the same side of my mouth as where we want to put it. If he can't get what he needs there he will go to the other side. The bone he is taking is from where the wisdom teeth were. I am hoping that I only have to have one side worked on. Please keep me posted, my thoughts are with you and glad things are going okay.

Take care.

Anne

My name is Dianne and I am a 12 year survivor of stage II OC (floor of the mouth) and an 11 year survivor of stage II OC (side of the tongue) and a 10 year survivor of stage IV OC (lymph nodes, radical left neck)! That ol' beast just kept coming back..but after the radical neck, I underwent radiation treatments and that was the last of the beast. I've managed to work full time during all of these surgeries and radiation and still keep up with my husband, six children and 8 grandchildren. Don't misunderstand me, the road has been VERY hard at times, but I always felt that if I quite working and changed my life style....then the beast won after all, so I just kept on going. The biggest problem I have had has been with the progressive radiation changes on the interior of my mouth. We just can't turn that darn radiation off, and the damage does get a bit worse with time. I take several medications that help and keep me going, but I often wonder what changes the radiation will continue to make in the years ahead. If anyone knows more about progressive radiation diaease, please let me know what to expect.
Nice to meet you all...see ya, Dianne

Hi Dianne..........Wow! Sounds like you've been through a lot! I, too, was diagnosed with SSC of the tongue and floor of the mouth. In April of 1997 I had both a hemmiglossectomy and radical neck done; I was given six weeks to heal from the very invasive surgery and then began my real battle: radiation and chemotherapy. I was given thirty eight days of radiation along with three rounds of chemo sprinkled in there for good cause. It was a difficult treatment regime, but I guess I don't have to tell you that. LOL

Five years later I still suffer from RAD with most of my difficulty being an extremely dry mouth. I am never without a bottle of water at my side and although I take the prescribed salagen, it doesn't seem to work well for me. My teeth are healthy (knock wood) but the bones in my jaw seems to be slowly going down hill. A few months back I woke to find a piece of bone literally coming out of my gum line. I have all the usual eating/swallowing problems but the majority of my problems seem to stem from dry mouth, which is a constant. I seem to have more difficulty in the winter months when the weather is dry, but also have trouble with my oral cavity if I do too much physical activity. Even walking my dog can cause my tongue to swell making my speech a real mess, and my mouth very sore. The dryness also causes sores on the inside of my cheeks/lips and then there is the constant burning sensation that I have 24/7. Still, like you, I plugg along; I have adjusted to make the best of a rather poor situation.

Really, the only thing that gives me comfort is keeping my oral cavity as moist and clean as I can, day in and day out. I have tried Oral gel, and salagen and even Biotene gum for dry mouth but nothing seems to work better than good old fashion water which, like I said, is always at my side.

Would love to chat with your reguarding cancer/dry mouth. You can either e-mail me personally or ask specfic questions on this forum. Either way works for me. I'm glad to hear that you've been able to keep the cancer at bay with either surgery or radiation. That gives me hope. Look forward to hearing from you again. Sincerely, Donna

This Friday (July 12) I am having the titanium implants placed in my newly grafted (March 20) bone. The graft site in my mouth has never really totally closed and still has exposed bone, but does not cause me any pain. When they open up the tissue they will be able to determine if they can put 2 or 3 posts in. I lost three teeth in my original cancer surgery, but since some of the bone graft did not take, I may end up with 2 implants rather than 3. I'm looking forward to getting the exposed bone covered with tissue again. I'll update next week on how it went!

Dave, Good luck. I like you had only partial success with the bone graft. I went back to day and we are determined that I will be getting 3 implants come hell or high water. I lost four teeth and just getting back three will be a pleasure. I'll be thinking of you. And again the best of luck.

Anne.

It's been a long time since I've posted, I follow all of the stories on this board closely and don't weigh in often but appreciate the input that all the regular contributors post. My case seems minor league compared to what many of you have endured, but emotionally we've all been changed forever. Two weeks ago I had my dental implants placed, Just over 2 years following my original cancer surgery. I ate thanksgiving dinner with a (nearly) full complement of teeth, I ended up -1 tooth after all was said and done. I was sorry to see Larry Sharp's recent news of round 2, I think Larry and I discovered Brian's labor of love about the same time and we're both listed on the dental lifesavers portion of the website. Hopefully it's a 2 round fight with Larry emerging as the champion. Best of Luck to all are actively fighting, for now I'm out of the battle, changed forever. This home that Brian has built has been nothing short of a miracle, the support that you all provide to one another is beautiful to watch. I, for one have an IOU out to Brian to support this site with my story and my resources ($$$). I hope we all can help out as much as possible. Again, thanks to all of you for sharing your stories as they unfold and a special thanks to Mr. Hill for his Labor of Love.

Stefon,
I came along about 300 members later than you and really enjoyed reading your postings from earlier in the year. I am glad that things are going so well for you. This really is an amazing place. The docs and techs at MD Anderson did a great job bombarding my body and the cancer with radiation up until Labor Day, and although they all mentioned that I would probably be back to feeling like myself around Christmas or first of the year, I had no idea how rough it would be or how bad I would feel once the radiation had ended and I was sitting around the house waiting to heal. I felt bad and got depressed and then discovered this wonderful website, which was such a source of information and inspiration. Kudos to Brian and to people like you, and everyone who writes in with valuable and caring information or even questions.

Danny G.

Stefon: Thank you for the kind words, they are indeed what nourishes me through the difficult times with the foundation. Just when I get a turn down from a corporate sponsor, a bashing from someone who thinks me too driven or outspoken, or lose another valued friend to this disease, I get buoyed by a positive comment and outcome like yours. I know it seems like it has taken a long time for you to come back from your journey with cancer, but to be cancer free and healthy now, and with teeth no less!!! I

Stefon, You lucky dog you, teeth for Thanksgiving. I agree with Brian we could use some more information on the implants. As for me, I have a screw coming loose where they put in my transplant. (I have always been told I had one or two loose.) The thing is trying to force it's way out my gum. The doctor said he would jave taken it out last week, but he left his screw driver in the hospital. I told him I felt like I was a car on the lift and he was a forgetful auto mechanic. Glad things are going well. Anne.