| | Joined: Aug 2011 Posts: 3 Member | OP  Member
Joined: Aug 2011 Posts: 3 | Back in 2002 I was diagnosed with squamous cell carcinoma of the tongue at age 28. It was stage T2N0M0. I had a partial glossectomy, radiation, and amifostine and was declared cancer-free.
Almost ten years later, I have a second tumor (a new one) in the same site. It is very aggressive and crossed the midline of my tongue. My trachea and lungs also lit up on the PET scan; I have not yet learned the results of my bronchoscopy and lung biopsies.
I just had my PEG tube installed last week. On Sept. 1 I am scheduled to have a glossectomy and radical neck dissection with a chest-muscle rebuild of the tongue.
I have never used tobacco in any form, and prior to my first diagnosis I didn't drink alcohol. (I started having a beer or two every so often after being diagnosed, because life is too short not to enjoy myself.)
I used to be a social worker before they fired me for being in the hospital for too many days. I used to be a candidate for elected office, but I suppose I can't do that without a tongue.
Dx 2002 with SCC of left lateral oral tongue, stage T2N0M0
Partial glossectomy, radiation, Amifostine
Dx 2011 with SCC of left lateral oral tongue, possible mets to trachea and lungs
PEG inserted
Scheduled for glossectomy on Sept. 1, 2011
Never used tobacco in any form.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Shelly, Welcome to OCF, glad you found us, sorry you had to my dear. Generally younger non smokers/drinkers are found to be HPV+ as HPV is now the leading cause of Oral Cancer. PETs are notorious for false positives so I wouldn't get to worked up over the hotspots and just wait for the biopsy results. What I would say is that in the present political environment a person without a tongue would probably be more welcomed then the forked tongued manipulators the voting public is used to, so don't count yourself out, it's all on how you spin it. Plus there are many here that have had total glossectomys and do very well speaking with work. I've never been one to accept limitations without extreme testing  Anyway, keep your spirits up and welcome to these forums! You'll find great information and support, we are a pretty tight knit community here. Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Shelly:
I am so sorry you had to join our group, but you are at the best place possible to get information from others, so, welcome. I'm sure tomorrow you will be getting replies from others on the Forum - they just seem to jump right in when they read messages like yours. It's sad that this happened after all those years, and scary. There are a few recent recurrences from others after many years that I am sure you'll be hearing about. Just wanted to let you know your message was read and others will join in soon.
An OC friend,
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Shelly, it would have been nice to see your post in Cancer Survivors thread instead of here. Unfortunately, it has come back and you are here.
I believe you are scheduled for total glossectomy with Radical neck dissection. My father recently had radical neck dissection for recurrent cancer and he too had chest-muscle rebuild. Chest will take longer to heal and more prone to infection, so take good care. Depending on your current status and previous treatment, you'll be further planned for chemoradiation or radiation or chemotherapy alone.
Rough road ahead for you, hope somebody is there with you to support you. Wish you luck.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | 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 there and welcome! I agree pet scans are notorious for false positives! Hopefully it's not cancer! Please keep the faith until you get definite results, good luck on the surgery - there are a few people here who've had total glossectomies and are able to speak and eat try not to despair! Healing vibes to you!
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I have to say I no longer rely in PET scans as I had a false positive back in December and they removed a portion of my tongue to hear it was radiation damage. I am so sorry you have to join us after so many years. You came to the right place. Lots of amazing people on here that have a lot to offer.
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) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Welcome and sorry that you have a recurrence. HPV is most likely NOT associated with your cancer but your cells can be tested. A few years ago we started to see a new subset of OC patients; those without a smoking history, younger, primary in the forward part of the tongue and HPV-. No one in the medical community has come forward with a cause so far to my knowledge.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I still believe that chronic irritation may hav something to do with this cancer! 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Cheryl,
Certainly possible but this new subset really just started showing themselves a few years ago and I doubt people just started irritating their tongues until recently.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 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 | Hi Shelley! Welcome to OCF! I am so sorry to hear about your recurrence after being well for so many years. I know it sounds very frightening what your doctors are planning for you. Im wondering if you are going to a cancer center and if you have had a second opinion. I know it seems like its very hard to get thru this but you can do it! Ive had oral cancer 3 times and gone thru some pretty rough times but Im now 2 years cancer free and doing very well. Here is an inspiring story from another OCF member who has gone thru a glossectomy. It shows the true spirit of perseverance! I think you will find some hope in reading about Kate. Best wishes with everything you are facing! Kates Story
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 | | |
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