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#194419 - 05/10/17 08:23 PM What Would You do?  
Joined: May 2017
Posts: 10
MrsSmitty Offline
MrsSmitty  Offline

Joined: May 2017
Posts: 10
I posted a week or so ago....
At any rate, I had an appointment with an Oral Surgeon yesterday. He was very through. The area of concern is on the side of my tongue and underneath. He felt "100%" there was nothing to be concerned with and felt the are was just vascular. What I am seeing is an area of red dots. I actually am a dental hygienist...I would tend to believe I am more in tune than most who don't have a dental background. I do not see the same on the other side, he said he did?????
I will back track a bit... I have been "sick" since February with hoarseness, ear pain(same side) and my submandibular gland(also same side) is extremely painful. For about 2 months my face on that side has been tingly/numb feeling. When that symptom arose, I was sent for a head and neck MRI which revealed thyroid "nodules". I was then referred back to the ENT who we had to push to have the "nodules" biopsied. Thankfully, the biopsy was negative.
The Oral Surgeon felt that "something" is definitely is going on and would like to be involved in trying to figure it out. He asked if he could contact my primary doctor so they could discuss. I of course gave the go ahead.
He called me today letting me know he spoke to her and depending on what my most recent CT(abdomen/pelvic) showed, they may refer me to a neurologist.
I expressed my concern with him once more about my tongue and surrounding area. I was in quite a bit of pain today..... I said I appreciated his efforts etc. but wondered if we should biopsy. Now he has left it up to me to think about....
The question I have is should I have it biopsied, or go on his expertise that he is "100%" sure there was nothing to be concerned about.......
I appreciate this forum so much and am looking forward to the responses!!!!

#194424 - 05/10/17 11:25 PM Re: What Would You do? [Re: MrsSmitty]  
Joined: Jul 2012
Posts: 3,103
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,103
The only thing that can prove cancer is a biopsy. Even that testing is subject to human error, but your doctor(s) may have a high opinion just on observation based on their experience. Mine wanted a biopsy for almost any suspicion be it a FNAB, punch, incisional or endoscopic biopsy under anesthesia, but my history with recurrences is different than most. Once an enlarged node wasn't biopsied right after treatment, and trusted the doctors opinion it was an inflammatory response. If I wasn't satisfied, I would go elsewhere and or see another one my doctors opinion or testing.

Good luck

10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent

#194447 - 05/12/17 11:19 PM Re: What Would You do? [Re: MrsSmitty]  
Joined: Apr 2017
Posts: 78
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 78
San Jose, California
I would most definitely get a second opinion. My ENT was convinced that I had a second branchial cleft cyst and wanted to postpone surgery to the end of this year - instead I had surgery 3/6 and they discovered my "cyst" was SCC in a cystic lymph node. I don't like to consider what could happened if I had waited.

Ear pain was my first sign; I know that is anecdotal but wanted to share it.

Wishing you the best of luck,

Keep fighting friends!

Me -- currently 49 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
#194465 - 05/17/17 10:21 PM Re: What Would You do? [Re: MrsSmitty]  
Joined: May 2017
Posts: 10
MrsSmitty Offline
MrsSmitty  Offline

Joined: May 2017
Posts: 10
Had biopsy today with the mentioned Oral Surgeon! We shall see....

#194468 - 05/18/17 03:42 AM Re: What Would You do? [Re: MrsSmitty]  
Joined: Jun 2007
Posts: 10,017
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,017
Very good! Im so glad you have had a biopsy done so you will get to the bottom of whats going on.

Finger and toes crossed that its negative.

Good luck!!!

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
#194498 - 05/21/17 05:53 PM Re: What Would You do? [Re: MrsSmitty]  
Joined: May 2017
Posts: 10
MrsSmitty Offline
MrsSmitty  Offline

Joined: May 2017
Posts: 10
So I had the biopsy on Wednesday. Holy Moly, I was NOT prepared for the pain that would come after! It's not so much my tongue, it's when I swallow. The oral surgeon took about a 2 inch section. It feels and looks like I have a bunch of canker sores! I haven't been able to eat a thing since! I have tried Jell-O and Mashed Potatoes. Any suggestions would be appreciated.
I have rinsed with warm salt water and today I have applied moist tea bags to the area.
I told my husband yesterday, if the biopsy comes back positive, I'm not sure I can handle any more.


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