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#172210 10-07-2013 04:49 PM
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aman Offline OP
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Hello All,

This is my first post in the forum.I would like to thank all the people responsible for maintaining this forum .

Please help me to get my symptoms diagnosed properly.

To begin with i was a cigarette smoker for almost 10 years with occasional alcohol use.I know that this is the biggest mistake that ive done in my life and have stopped them completely from past 2.5 years

symptoms:
> Feel burning sensation/drilling like sensation inside cheek (buccal mucosa) area for almost 3 years now.It has increased in frequency over past few days.Iam experiencing the same symptoms on the sides of the tongue also.
>Ive felt tooth pain or loose teeth for no particular reason and ear pain also.
>Difficulty while swallowing

Above symptoms are not persistent and usually lasts for a periods of 15-20 min

Iam also having sarcoidosis which is lung biopsy proven around the same time ie 3 years .

Ive observed that while iam on cortico steroids(immuno suppressants) the above mentioned symptoms gets flared up bcoz these steroids make my immune system supressed to avoid damage to other organs as a result of sarcoidosis.

With these symptoms iam sure that its related to cancer but iam not able to confirm medically as most of the head and neck oncologist/ENT/DENTISTS have ruled out any kind of cancer as they dont see any white/red patches/sore/lump.

I strongly feel that the above symptoms(pre cancerous/canceros cells) have caused sarcoidosis and I strongly feel that at present iam managing only the after effects (sarcoidosis ) and not the source of the problem ( cancer)


I would like to know from the expert people over here on the tests required to diagnose and confirm oral related cancer.

Please let me know if any one had felt the above symptoms and got them diagnosed.

Thanks in Advance

Thanks
Aman






aman #172226 10-08-2013 05:44 AM
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Welcome Aman, my suggestion would be to see an ENT, Ear, Nose and Throat Doctor, who specializes in cancer, which would be one of the first steps in diagnosing whatever condition it is in the head and neck, such as the difficulty swallowing. Actually visiting your primary doctor usually is. Your symptoms could be from anything, non cancerous mostly, but any symtom lasting longer than 3 weeks should be looked at. Could be very well be from the corticosteroids. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






aman #172227 10-08-2013 05:46 AM
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You need to be under the care of a qualified dental "expert" in your country. Let's see what they say.


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.
aman #172231 10-08-2013 08:01 AM
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I second what paul and David have said. I know you have seen ENTs - so in this case with them all saying you do not have cancer, what you need to do is be diligent. No one can diagnose cancer if it is not yet present. If you have a specific area of concern, then they can biopsy it, but usually they have to be able to see it or at the very least FEEL it - as in a lump, or lesion, or even have a reactive node. So ideally you go for regular dental check ups with a dentist, keep a close eye on your mouth so you know what is normal, and finally see an ENT - someone who knows Oral cancer - regularly. Maybe every three to 6 months? Or if anything in your mouth changes. best of luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
aman #172243 10-08-2013 10:08 AM
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Hello Paul,David,Cheryl

Thanks for your valuable suggestion.

Will surely be diligent and get the regular dental checkups.

I just hope that the oral cancer detection methods gets updated and help in early diagnosis of the disease.

davidcpa #172254 10-08-2013 12:31 PM
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[quote=davidcpa]You need to be under the care of a qualified dental "expert" in your country. Let's see what they say.[/quote] Hi David,
I've been searching for the definition of this "expert". What specific qualities, experience, education, certifications should a dentist posses to be considered an oral cancer dental "expert"? don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
aman #172287 10-09-2013 05:47 AM
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Aman's from India so that's why I phrased my comments to include the word expert since I have no knowledge how India classifies their dental practitioners.


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.
davidcpa #172304 10-09-2013 09:34 AM
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David,
I have been trying to find a dentist that has specialization and knowledge about those of us who have weakened teeth and bones from chemoradiation. Not having much luck in that area. thanks don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
aman #172308 10-09-2013 10:56 AM
Joined: Dec 2010
Posts: 5,264
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"OCF Canuck"
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you're looking for a dental oncologist. Talk to your hospital most have a dental department, if they don't then look up dental oncologists online. best of luck...


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
aman #172384 10-11-2013 07:22 AM
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Posts: 23
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Aman, please don't give up on getting opinions. My Dad was not diagnosed until 6 months of diligently going to different doctors. If you know something is wrong keep looking for specialists! Good luck


Caregiver along with my mother to my Father
SCC 12/2012 age 63
25 rad end 2/2013
10 rad end 7/2013
9/19 recur. Stage IV
not a candidate for surgery
more chemo 10/2013
Clear PET 01/2014
cancer back on PET 04/2014
not operable MET to nose
at a NCCN
35 Rad start 06/23/14
Chemo every week during Rad for 7 weeks
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