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Afraid of Possibility of SCC

BravoSix
Posts: 3
Joined: Dec 2012

Hi everyone - I was a long time lurker on these boards because about 10 years ago I lost my father at age 27 to a rare large tumor in his leg that eventually metastacized and caused an Aneurysm.

 

So my story is this, about a year or two ago I saw white patches on the sides of my tongue and immediately was concerned as I'm a hypochondriac for sure.  After seeing a few doctors everyone has dismissed it as Frictional Keratosis as I had my Wisdom Teeth out very late in life and my teeth are now malformed and rub on my teeth.

My problem is this waxes and wanes.  I do get pain with spicy foods, but only sometimes.  It just feels like my tongue is too big at this point.  My question is, is waxing and waning a symptom of tongue cancer?  I know I need a 4th opinion at this point and probably need a BPA Free Mouthguard.

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

that can be seen on the tongue or other mucous membranes are basically whitening changes.  Those do not wax and wane with cancer, nor with premalignancy.  Also, multiple areas, as opposed to a single focus, militate against cancer as a cause of these findings.  I don't want ot pour gasoline on the fire, but if you are going to worry excessively over this situation, you might request a toluidine blue test.  Here's a reference:  http://www.news-medical.net/news/2005/09/01/12873.aspx and there are scientific articles as well you can read if you've a mind to that are available on the internet.  Toluidine blue is an easy  compound to use, the examiner just has to have some experience interpreting the findings.

 

best to you

 

Pat

BravoSix
Posts: 3
Joined: Dec 2012

Pat - Thank you so much for your reply.  I didn't know that patches stayed consistent with oral cancers.  Mine definitely depends on usage and even how much I talk during the day.  Ill definitely consider the test to ease my mind.  So you are thinking this is something else that I just need to watch closely it sounds like?

BravoSix
Posts: 3
Joined: Dec 2012

Because it is more pronounced on one side

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

of white patches on the side of the tongue.  Repetitive scrape trauma is what you are describing, and it wouldn't be a far stretch to imagine one side is more effected than the other.  I had that for quite awhile after radiation.  My mouth was dry, and I was forced to talk more than my mouth would tolerate.  So I rubbedd the sides of my tongue raw, literally.  The beauty of the toluidine blue test is that it differentiates between premalignancy and trauma, fwiw.  I think all this is worth discussion if you are not reassured by exam and reassurance by a competent ENT, or mybe better ENT oncologist.

 

Pat

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Bravo- Frictional Keratosis it is called? I had to go to a Periodontist within the first year post-tx due to spots on both sides of my tongue, which resembled canker sores, and were caused by skeletal/tooth root exposure on the side of my gum rubbing against my tongue. The Periodontist ground them away and gum tissue collapsed around and over the skeletal spots- but the white spots are still on both sides of my tongue. They are the same size they've been the last couple years. Remember- one of the traits of C is that it is uncontrolled growth- so if it was C the spots would get bigger. When they first developed there was negative sensation from the tongue spots, but that has long ago faded away, or I've just gotten used-to.

kcass

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Pat, is this the test that allot of Dentists are starting to give? I remember after my initial diagnosis, I went to see my Dentist for a check up prior to radiation treatment, and he asked if he could perfrom this test on me. he had just gotten the test kits, but was not very famillar with oral Cancer, and also felt bad as he still thinks if he was up to date with this test, might he had been able to find something suspicious sooner and then send me on to a doctor for an opinion.

I am seeing more and more information regarding Dentists to try to be on the frontline regarding early warning of H&N Cancers.

Mike

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

the funny thing is, a lot of medical  progress is stuff that is recycled.  Toluidine blue has been used for screening in the high-risk population for vulvar dysplasia and cancer for many decades.  It isn't used as much any more because direct microscopic exam of the vulva is now commonplace.  So gynecology has gotten away from toluidine blue, while ENT is now beginning to embrace it, lol.  It is a VERY MESSY dye.   At the same time, Pap smears can actually be done from the mouth/throat.  Some are advocating them as part of routine dental screens.  The more things change, the more they stay the same.

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

oops, the new site still double posts....

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

I go to a green dentist here in AZ , refill tested water , cloth bibs , etc. He is the first dentist that when he takes yearly X-rays not only  puts that heavy apron over me , he had a seperate collar to go around the neck to protect that area... He also is the first dentist that does a complete oral cavity and tongue exam looking for any thing abnormal , he hasn't done any blue dye test , thanks for mentioning , I'll ask him about it. 

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

BUT, and doesn't it seem to always be on in every conversation...I can understand your concern; I finished all my treatments for SCC of the right tonsil in Dec 2011. Sometime in Feb of this year I notice some small what round spots on the left side of my tongue, nothing big and didn't hurt. I saw my onco for a scheduled visit and asked her about them , she said it could be scatter burn from the radiation, even though they were never there during any rad treatments, but she also said to ask my ENT when i saw him. At that appointment with the ENT he said it could be just an infection, he gave me antibiotics, they didn't work so he said maybe thrush, he then told me to swish with the magic mouthwash, this whole thing went on until May..each and every time I saw the onco, the rad doc, and or the ENT I assked about tongue cancer. all said no. Not that your a hypochondriac, nor am I but I think once we have cancer, every little ache or oddity makes us wonder. When I saw my ENT, who by the way I was seeing every 6 weeks , in May I told him that certain toothpastes or foods would burn, anything I ate that was rough bothered the area, the spots never got bigger,anyway he said if when i saw him in early June and the spots were still there he would do a biopsy. That was done early June, I went back east , and get a call that the biopsy showed scc..now the kicker here is I had 3 previous clean PET scans , I asked how this could be, and was told the spots were so small the PET never picked them up. June19th I go in and have a small section of the left side of my tongue removed, all clean margins. I don't want to scare you, but be vigilant in how  those spots look and feel , as some say it could be nothing, but for me I feel if it wasn't for me being persistant with all 3 docs I don't know what would have happened. I just had a CAT a few weeks ago and all is still NED.

 

Linda

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