#50239 05-02-2007 02:57 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jerry,
I just sent your post wrapped in a sugarcoated message to my dentist.
Don't want to offend the guy with sharp tools in my mouth, now do I?
Thanks for taking the time to develope the post.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#50240 05-02-2007 06:07 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Colleen, The info I have directly from VELscope is that the device "was developed by The British Columbia Cancer Agency and LED Dental Inc. This is from a Public Relayions Statement given to me by them after purchasing the light. MD Anderson may have been involved, but not acknowledged here. David, Glad to help. Good luck with your dentist. If he wants to discuss the VELscope and it's usage with me, let me know. I'll get in touch with him. Jane, Getting back to your April 30th question: 1. ViziLite...This is a link to the page on their site that explains how it works. http://www.vizilite.com/about/ 2. VELscope...There is no real good explanation on their website, so I found this in some literature I got with the light: "The VELscope handpiece emits a safe, visible blue light into the oral cavity which excites the oral tissue and causes it to fluoresce. When viewd through the VELscope Handpiece, healthy tissue typically shows up as a bright green color while suspicious tissue can cause a loss of fluorescence, which thus may appear dark." I hope this helps. Let me know if there is anything else I can do. Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#50241 05-02-2007 06:33 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Thanks. I wonder where I got the MDA info for the development of the original Velscope. I will work on that, bec. I surely do not want to mis-represent anything.
I do know that MDA is working on a similar device, which will use two separate instruments in two separate steps.
when I get a minute.....another day!................I'll do that research and report back.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50242 05-02-2007 09:43 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | OK..Here is the quote from the Velscope website, under "History:" "VELscope is a revolutionary hand-held devicee that provdes dentists and hygienists with an easy-to-use adjunctive mucosal examination system for the early detection of abnormal tissue. The patented VELscope technology platform was developed in collaboration with the British Columbia Cancer Agency and MD Anderson Cancer Center, with funding provided in part by the HIH. It is based on the direct fisualization of tissue flourescence and the chanages in flourescence that occur when abnormalities are present."
At least I did not imagine reading that MDA had had a hand in the development of the VELscope, or at least the "patented technology platform."
I will try to find the link to the MDA site that describes their current work on a newer version of the same instrument.
That's the way with technology, isn't it? It's obsolete before you get it out of the box.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50243 05-02-2007 11:01 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | That's "NIH".....I need to proofread my posts better!
I am thinking that the two-part diagnostic process might have come BEFORE the VELscope. I'll keep looking. A 2005 MDA article mentions it.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50244 05-02-2007 02:50 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | Well, I have to step in here and set a couple of things straight. The science of tissue fluorescence has been around awhile. The NIH, under the arm of the NIDCR (with insights starting much of this direction from previous director Dr. Hal Slavkin who is now dean of the USC School of Dentistry, and an OCF Advisory Board member, and current NIDCR leader Dr. Larry Tabak who I have met with on several occasions.) has put up the bulk of the money for looking at this science. Even the BC Cancer agency under Dr. Miriam Rosen (our newest advisory board member) who I just lectured with at the public health meeting in Denver this last week, got their funding from NIDCR. Some of the earliest work came out of multiple universities, again with the same funding source. The first working prototypes were made at the University of Texas, School of bioengineering. Those prototypes were tested by Dr's Ann Gillenwater and Rhonda Jacob at MDACC (Also friends of mine and with Jacob an OCF advisory board member). Gillenwater did proof of principle in the cervical area, and Jacob in the mouth, but they have consistently worked as a team. They are still working on the second-generation design, which is less a discovery device and more of a diagnostic device. This version is the VELscope on steroids. Since LED
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. | | |
#50245 05-02-2007 03:27 PM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2006 Posts: 137 | Dentists aren't gonna have any incentive to be trained in or use this thing because oral cancer is not an issue with the large majority of people. You can bet that most of us when diagnosed had no idea of the sypmtoms, let alone any thoughts or fears about H&N cancer.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#50246 05-02-2007 03:31 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | With respect to the group that does care (not all of them are without incentive to do good in their patient populations) they will use this device, and the companies are selling a bunch of them. It has been suggested that this change in their behavior, the first of significance in 5 decades, is less about doing what is right, and more about creating a new profit center in their practices - the oral caner screening process. I will refrain from comment, as I feel the end result will be the same. More people will get screened regardless of motivation, and more disease will be found early.
Also please note that as a very vocal organization about all this, OCF has effected some of this change. Much of my time is spent lobbying wiht the organizations involved in the entire process from the CDC to the ADA and everyone in between. Do not think that when I get the attention of several thousand doctors at a meeting and speak to the issues of non compliance with any screening effort, lawsuits for failure to daignose, and more, that they ignore the issue. Change does not happen overnight, but it does happen if you hammer on it enough with the right incentives.
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. | | |
#50247 05-02-2007 04:09 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | WOW! Brian you are so totally informed! Thanks! I want to help promote the VELscope, but I didn't want to say anything that was not correct.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50248 05-02-2007 11:07 PM | Joined: Mar 2004 Posts: 117 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2004 Posts: 117 | Late to the party as usual, I will add my two cents as well. I use my background as a dental hygienist, oral cancer survivor and dental practice management consultant to educate dentists and hygienists on the necessity of early detection, their obligation to be doing thorough oral cancer screenings on every patient, and the realities of who is getting oral cancer today. My experience as a dental professional and oral cancer survivor gives me credibility with the dentists and hygienists and most of them have their eyes very widely opened when I speak. I educate then about how to do a proper head and neck exam, a thorough oral cancer exam, about how both ViziLite and VELscope work, and how to integrate one of those technologies into their practices, not as a profit center, but as an adjunctive screening tool that may increase the odds of finding precancerous and early cancerous lesions.
When I speak, I am not paid. The only time I was paid, I donated the money to OCF ($580 to the walk in New York). I have several speaking dates scheduled and I will post them so anyone who wants to let their dentist know about them can do that, if Brian says it is okay. My goal is to make a real difference in the five year survival rate for this disease, so if I have to do it by training one dentist at a time, I will do it.
I am serious about this commitment.
Barb
SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
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