Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#95420 05-14-2009 04:29 AM
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
OP Offline
Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
Last February, I noticed a lump on the floor of my mouth on the right side. It was very painful. Every Dr. I went to said cancer is not very painful in the early stages. The only Dr. the definitely said I needed a biopsy was my dentist. This lumo was only removed because it continued to cause pain and was getting bigger. When I began to have ear pain, then my specialist said let's do surgery and remove it. Did anyone else on here have pain before they were diagnosed? It was like one nught I was fine and the next morning I woke up with pain under my tongue only when eating, and then it gradually got worse. The pain is what kept me going back to the Drs. Just wondering.

Angelia


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I never had any pain but my Primary was BOT, if that makes any difference?, and by the time I found my cancer it was because of my swollen neck, again painless. If it wasn't for my wife I would have delayed going to see a doctor until perhaps it was untreatable.


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: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
I had tremendous ear pain for over a year and was constantly misdiagnosed with sinus problems, TMJ, stress, clogged Eustachian tube, etc. Turns out ear pain is a classic symptom of base of tongue cancer due to nerve location. My tumor had grown so big and spread to lymph nodes by the time I finally had a CT scan. Congratulations on getting it early - much better odds on beating this than if discovered very late like mine.
My guess is they might suggest radiation and chemo as a precaution against recurrence.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2008
Posts: 489
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Sep 2008
Posts: 489
How is it that so many "classic" symptoms can be mis-diagnosed or missed as cancer? I had pain at the back of my mouth where my partial sat against my gum and that is a sign that there could be a tumor at the base of your tongue also. It was not until the tumor poked through the previous flap sugery that we did a biopsy and found that there was a tumor 6 cm at the base of my tongue. I wish that I had known more to make a bigger deal out of it and maybe we would have found the tumor sooner?

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
OP Offline
Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
Thanks for all the replies. This is all so new to me. I haven't even had my follow up appt. for my surgery yet. It amazes me how one phone call and three words can change a life forever.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
I had pain for a long time and couldn't get any of the Drs to check it. I kept hearing it's nothing and will go away soon. I guess soon meant as soon as i had sugery LOL Well, been there had that and still have pain.


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)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260

My biggest pain now is in the lower right jaw on the gum where the molar was. Damn thing hurts all day long and when I eat it gets really after me. Miracle MM helps some b ut not tha much. Maybe this new med will help when I get up to 3 daily and at one time, that time is before bed tho.


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: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
OP Offline
Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
You still have pain even after the surgery? Do you think that will ever go away? I am a week post-op and now am not on pain meds, but can not eat any solid foods as of yet. I know I consider myself lucky to catch this thing so early. I only lost a portion of my tongue and some off the floor of my mouth. I do find that talking alot it still really painful. Unfortunately I am a teacher and have to talk a lot. My first ful day back to work was today and I was an emotional wreck after another teacher decided to make an insensitive comment about my speech.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Nov 2005
Posts: 1,128
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Nov 2005
Posts: 1,128
My first two cancers weren't painful, but the third was and that was a good thing because it had not showed up on a recent CT scan and was deep enough in my throat that it wasn't obvious. The pain at the site, plus pain in my ear on that side, pushed me to ask my Doc to take a look -- He did and immediately took a biopsy, which turned out to be more SCC.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Mar 2009
Posts: 54
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Mar 2009
Posts: 54
I didn't have any pain and had no idea that anything was wrong. Mine was found when I had a follow-up CT to check a neck fusion. I know how lucky I am.


Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
Page 1 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,826
Newest Members
Gilliland23, mricheryl, Pamj63, Sally_Canada, Al Z
12,897 Registered Users
Forum Statistics
Forums23
Topics18,044
Posts196,287
Members12,898
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2021 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5