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#13254 03-19-2002 09:42 AM
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stefon Offline OP
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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.


Stage I diagnosed 9/18/2000

Dave
#13255 03-19-2002 09:43 AM
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#13256 03-19-2002 09:44 AM
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stefon Offline OP
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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.


Stage I diagnosed 9/18/2000

Dave
#13257 03-19-2002 09:45 AM
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#13258 03-19-2002 09:48 AM
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stefon Offline OP
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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!


Stage I diagnosed 9/18/2000

Dave
#13259 03-19-2002 09:49 AM
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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 G.Younger
Life has never been better.
#13260 03-19-2002 09:50 AM
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stefon Offline OP
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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.


Stage I diagnosed 9/18/2000

Dave
#13261 03-23-2002 10:28 AM
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stefon Offline OP
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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. smile


Stage I diagnosed 9/18/2000

Dave
#13262 03-23-2002 11:00 AM
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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 G.Younger
Life has never been better.
#13263 05-19-2002 06:37 PM
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stefon Offline OP
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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.


Stage I diagnosed 9/18/2000

Dave
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