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Dan721 #163623 04-05-2013 12:37 AM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Dan, as I previously advised you need to see an ENT or oral surgeon. Not all dentists check for oral cancer let alone diagnose it. Unfortunately many are not up with current medical findings that oral cancer can be found in younger seemingly health patients. Brushing the heck out of it is like ripping off a scab, it makes it appear that the sore is gone but its really still there underneath that top layer. Please avoid shooting that spot with a waterpik. I know you are anxious and want to know whats going on but it takes time. Even if you see a qualified ENT or oral surgeon tomorrow and they do a biopsy it will take another week for the results to come back.

How about attending the OCF's Philadelphia OC Awareness Walk on Saturday? Its at a dental school and they will have specialists on hand doing oral cancer screenings. They may be able to fast track any unusual findings to a qualified professional. Hurry, registration closes 4/5/13 at noon. You can still attend if you miss the deadline but may not get a tshirt and registration will be $30 instead of $25.

OCF Awareness Events (OC screenings at events)


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Dan721 #163660 04-05-2013 10:27 PM
Joined: Mar 2013
Posts: 10
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Hi everyone,

I think maybe I should explain a little better. When my dentist told me to "brush the hell out of it" I'm sure he did not mean to grind away at it. That is only detrimental to gum health. What he meant was brush directly on that area very often (3x a day or more), but to brushly lightly as I normally would, not to abrase it or press on with the brush. I use an electric toothbrush at a 45 degree angle to the gumline as my primary dentist has always taught me. I have to politely disagree with your advice not to use the waterpik directly on it, as I have definitely seen clear improvement since I've begun. I've also been rinsing with warm water with a little salt and baking soda as you recommended. I'm definitely not abrasing the surface or removing a layer of tissue when cleaning it, just following the dentist's advice and in result I'm seeing a return to normal pale pink tissue color in the area. The patch has began shrinking from the borders inward.

I also have to politely disagree that a reduction in red area can be caused by unknowingly removing the top layer. According to the medical journals I've read online, the redness of erythroplakia is the color of the underlying blood, which is seen more clearly through that tissue than in normal tissue because of a localized inflammatory response to foreign "eothelial cells", or due to thinness of the epithelium. In any case, since the redness is from the blood underneath the surface, it should not be possible to reduce redness by bringing the blood even closer to the surface by reducing the surface layers; this would only make it redder.

I definitely still want to get a biopsy if the patch does not totally disappear on its own as a result of this treatment, however at this point it seems that it really will. I could just get one anyway, but I would rather not scar my gum if there is an almost 100% chance of it not being cancer. I don't believe that according to anything I've read dental care can cure erythroplakia; therefore if it does, then it simply was not erythroplakia. I hope that you take my word for how well the red patch is responding to the new treatment, because my own descriptions were all you had to begin with, only my dentists and I have actually seen the patch. I truly appreciate all of your help and I know that your diligent warnings to get a biopsy are from personal experience and from a wish to spare me the suffering that you and your loved ones have gone through by waiting too long. But please give me a little more time to see how the patch continues to improve.

Christine I don't think I can make the walk tomorrow, but instead I've already made a donation through https://donate.oralcancer.org.

Thank you all so much for your advice, and although it's possible that not getting an immediate biopsy is a wrong decision, for right now at least I feel I am pursuing the right avenue by watching it improve and keeping the option open for one if it does not completely clear

Dan721 #163667 04-06-2013 05:55 AM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Ok, Dan! I am wishing you all the best with this. Please take care of yourself and watch your sore closely.

Thank you very much for your donation! That was very kind of you smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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