| | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Dec 2013 Posts: 78 | Hi,
An oral surgeon performed biopsy and results came 100% positive. I have a tongue cancer. Still awaiting to meet experts team to go through staging.
Tumor is visible on right side of my tongue and is about 2 CM in radius as I can see clearly everyday.
I was diagnosed on Dec 4, 2013.
Will keep you posted once staging is done. I am telling you man, this is the worst thing anyone can have in their life.
Still, it's life, stay with your family and move on with treatment options with full confidence. Worry will adversely affect your recovery pattern and will keep you morally weak. Please feel free to share your thoughts, experience and feelings here. So positive outlook with bunch of hopes is necessary to win this battle...
Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear | | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | Hi! You sure found the right place for answers and support! Everyone here is awesome.
Mine is right side of tongue too. Like you, no smoking, etc. How old are you? Me, I am 38. Baffles docs when you don't fit the profile.
Hope you get results soon and a clear path to a treatment plan. Hang in there.
Kristen
Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
| | | | | Joined: Nov 2013 Posts: 18 "OCF across the pond" Member | | "OCF across the pond" Member
Joined: Nov 2013 Posts: 18 | Hi,
Mine is right side of tongue too. I've just gone through surgery and am waiting for next set of results.
This is a very supportive site - people with first hand experience will try and answer your questions and will give you advice about questions to ask.
Read and educate yourself was one of the best things I was told
Best of luck
Cheryl
Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | NS, I'm so sorry to read your post. But to say it sounds as though you have the right attitude to beat this damn thing is an understatement. You're now part of our family and we'll help you in any way we can.
Sending positive thoughts your way.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | 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 | Welcome to OCF. You have found a great place for info and support. Read and educate yourself about OC. An informed patient is much better able to advocate for themselves.
Best wishes with everything!
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi welcome... I had the same cancer (aproximate same sizes s well) - left side though - I was bx'd dec 10 -2010, dx'd dec 20. Not fun at Christmas.. You will get through it. Push them to move quickly.
Hugs.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Sorry about your diagnosis but welcome here. You are starting with a great attitude which goes a long way to get through the pretty tough treatments. You will make it, just need to be ready and take one day at a time. 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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Never -
My cancer is different from yours (tonsil), but I can still welcome you to the family. You have already been contacted by multiple people with your same diagnosis, so I see the cavalry has already arrived, a fitting tribute to the wonderful members of this family.
Stick with us, we know how to help you get through this. Get yourself a spiral notebook to jot down notes of what you learn from reading, but more importantly to jot down the MANY questions you are going to think of - questions for the forum, questions for the doctor, questions for the nurses, the list will get long, get a couple of pencils.
Once again, welcome.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Jul 2013 Posts: 16 Likes: 1 Member | | Member
Joined: Jul 2013 Posts: 16 Likes: 1 | Welcome to the club. Membership dues(aka cancer) are a bitch, but you would be hard pressed to find a more supportive and caring group. You can see in my signature that I shared a similar diagnosis. I know how overwhelming this all can be. It is a very scary and disheartening time, especially having to wait for treatment. While I can definitely understand the sentiment of saying this is the worst thing ever, I can tell you from experience that that viewpoint will very likely change. I started off with the same mindset. Cancer of the oral tongue is very treatable, though, with most patients getting a very good prognosis. By no means will it be easy. In fact it just plain sucks. The big eye opener for me, however, was while I was going through chemo with people who don't have a set number of treatments to get through. They keep going just to keep tumors from growing with very little hope of the cancer actually going away. All cancer is terrible, but I count myself lucky on how treatable mine was. You seem to have a great attitude going into this. That attitude and a good support system go a long way. There are plenty of people here willing to answer any questions you have throughout this hard journey so don't hesitate to ask about anything.
Dan
Stage 4 SCC on right underside of tongue
DX on 7/19/13 at age 29, no tobacco, light drinking
Partial Glossectomy/reconstruction/neck disection 8/20/13
Temp Trach, PEG tube
4/59 lymph nodes cancerous, 1 with extracapsular extension
Chemo - Cisplatin - 3 treatments started on 10/01/13
Radiation - 33 treatments started on 10/02/13
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Neversmoke, welcome to the jolly band! As other have noted, you've got the right attitude and that factor has the largest impact on the way you get through this of all factors involved.
It's a long way from the worst thing one can have happen, however. Even so, I wouldn't wish in on anyone.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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