| Joined: Jun 2019 Posts: 2 Member | OP Member Joined: Jun 2019 Posts: 2 | Hi everyone,
I'm a 34 year old man and this is my first post on this forum. About a week ago I began having a burning sensation on the tip and edges of my tongue that felt almost identical to the somewhat uncomfortable numbness you get about 30 minutes after scalding your tongue on hot food or drink (i.e., once the acute pain ends and the dull, nagging discomfort sets in). This was accompanied by a swollen, painful lymph node right in front of my ear (preauricular, I believe it's called). While the lymph node shrank back down to normal after a few days the burning sensation remained and yesterday I had an appointment with a dentist to see what was going on. After listening to my history he initially said it sounded like 'burning mouth syndrome,' but when he visually inspected my mouth he noted that the areas corresponding to my pain looked slightly darker than the rest of my tongue, but without any actual lesion evident (lumps, ulceration, etc). He then inspected the area with a VelScope device and said that the tissue showed up as abnormal. He told me not to worry too much yet, as this doesn't automatically mean that I have cancer, but he referred me to an oral surgeon to have a biopsy performed. This will occur next week. In the meantime I've been doing some amateur armchair research on the accuracy of the Velscope device and am finding wildly contradictory research, some of which indicates that the device has a near 100% sensitivity and specificity for identifying cancer, while other studies document that as few as 12% of tissues deemed abnormal by the device turn out to be cancerous upon biopsy, and suggesting a very high false positive rate. I realize that no one here can provide medical advice but I'm wondering if any forum members have experience with false positive velscope results? I suppose I'm looking for some hope that this could possibly turn out to be benign. Thanks for reading, and thanks in advance for any input you may be able to provide. | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | I’m afraid you’re right in saying that we can’r provide medical advice seeing that we are a group of patients/caregivers who only have our own personal experience to draw on. I do believe you have a caring dentist who is now referring you to an oral surgeon for a biopsy. That will give you a definitive answer as to what is going on in your mouth. I don’t think you would prefer to be always second-guessing — the doctors, the equipment, etc. because there is no end to that and you’ll always be anxious.
I understand how it may worry you until the appointment with the oral surgeon happens. But if you would spend the time doing stuff that you enjoy and takes your mind off the “worst case scenario,” time will pass quicker and more pleasantly. Like many on this forum have said, “Don’t borrow sorrow from tomorrow.”
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | |
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