| | 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 | I went to a well respected MO, which was my 3rd doctor, who put me on antibiotics and assured me more than once that I did not have cancer. He was positive my swollen nodes were Cat Scratch Fever which was exactly what I wanted to hear. Fortunately my wife tricked me into going to an ENT, aka Dr Death, who did a FNA and confirmed SCC. He then got me an appointment at Moffitt and the rest I hope is history.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It was my surgeon that finally checked me out when I asked him to when he was about to take his turn on the game show,, see who can put Jim to sleep the most times. Heck this guy has a 15 to 1 lead. He found the cancer for me finally that the others had missed and didn't care to look at.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I should have added he was doing an Endoscope for my Barretts.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2009 Posts: 4 Member | | OP Member
Joined: Jun 2009 Posts: 4 | I am pleased to report that the ENT doctor I was referred to diagnosed me with an inflammatory process in my mouth. He gave me a script for an anti-inflammatory, and thinks that should take care of my symptoms. But he was very positive that I did not have cancer, so yay for that.
Thank you all for your support and guidance. I wish you well.
Bethany | | | | | 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 | What is an "inflammatory process" in your mouth?
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: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Bethany,
My personal opinion go to an Oral Surgeon. I wouldn't be satisfied with his Inflammatory Process. Be on the safe side make an appointment and GO....
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Bethany, Im sorry to have to explain this to you. A visual examination will not determine cancer. A perscription will not cure it either. Only thru a biopsy is cancer able to be determined. Did the ENT do a biopsy? If not then you will need to get to another doctor either and ENT or oral surgeon to get this done right away.
Best of luck.
ChristineSCC 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  | | | | | Joined: Jul 2008 Posts: 11 Member | | Member
Joined: Jul 2008 Posts: 11 | Bethany
I do not have oral cancer but thought I did last summer. It was very scary. I went to my GP who didn't even see what I was talking about. I went to my dentist who thought it looked like an amalgam tattoo (mine was on the inside of my gum below my molar, close to the floor of my mouth). I went to my ENT who told me I had bad sinuses (helpful, but irrelevant). I finally went to an oral surgeon who told me it looked like an amalgam tattoo but it could be oral melanoma but more importantly, that anything suspicious in the mouth needs to come out if it doesn't go away on its own.
He did the biopsy. Yeah, it hurt as that's a spot where needles don't feel so hot going in. Moreover, the 5 days afterward were damn painful - he removed a fairly good size chunk of the surrounding tissue and swallowing was really no fun. But at least I knew what it was (an amalgam tattoo) and he knew what it was and I was no worse for the wear.
Not having had oral cancer, I cannot advise your next move. But I think you're getting really solid advice from some very experienced and very smart people on this site. I'm sorry their advice conflicts with what your ENT says but worst case scenario, if you have it biopsied and it is benign and is the inflammatory process he says, you too will be no worse for the wear, right? | | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Bethany,
You are getting good advice from everyone here. We have seen way too many people that have oral cancer either misdiagnosed or missed diagnosed.
With the long list of symptoms that you gave in your post I would say that they all can't be brushed aside with a diagnosis of an inflammatory process.
You need to find someone that is going to do a biopsy if there is anything still present to be biopsied. It could be an oral surgeon or an ENT physician, but find someone. Remember not all doctors are created equal.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Ok, but the conventional wisdom is that if you are not responding to the meds within 2 weeks then you need to go back to an ENT or head & neck surgeon and be sure that he or she has cancer experience.
Last edited by Gary; 06-23-2009 09:52 PM.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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