| Joined: Oct 2013 Posts: 4 Member | OP Member Joined: Oct 2013 Posts: 4 | 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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | 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 | 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.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | 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
| | | | Joined: Oct 2013 Posts: 4 Member | OP Member Joined: Oct 2013 Posts: 4 | 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. | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | [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 | | | | 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 | 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.
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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 | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | 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
| | | | Joined: Oct 2013 Posts: 23 Member | Member Joined: Oct 2013 Posts: 23 | 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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