| | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Dec 2009 Posts: 63 | hey
i had what i thought was an ulcer on my tongue way back in March (i think). my GP was concerned and sent me to an ENT who (after a course of antibiotics failed to cure it) took a biopsy. painful stuff that. he missed anything that may or may not have been there at the time (late June) and we ignored it until October when he had another look and said he wanted to do another biopsy.
I went elsewhere for a second opinion (wasnt keen on the biopsy!) and while waiting for that appointment had a regular dentist checkup. he took one look and organised a specialist oral surgeon to have a look that afternoon. A biopsy was scheduled for the following week (can't escape some things huh?!)
although he took a bigger sample, it wasnt quite as painful, but the pathology wasn't quite as good.
the result was a stage 2 SCC on my left oral tongue.
MRI's, CT's and a camera up my nose and down my throat show no spread elsewhere.
My surgeon is confident he can remove the entire tumor when we go in for surgery next Monday. He's taking a fair amount of tongue so it would be great if he can get the whole tumor too!
Aside from a rough first day or two after finding out it was cancerous (lost my dad to cancer when i was 10 so my family carry a bit of emotional history there), i have managed to stay positive about what's around the corner.
not without awesome family/friends support of course...
peace to you all
jp
stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | sorry to hear about your ordeal but welcome to the forum. this is a great place to come for a wealth of knowledge from others that are there and/or have been there.
it sounds like you have a great support group around you at home, u will need them.
just take your recovery one day at a time and hopefully before u know it, this will be a fading memory.
good luck and let us know how ur progress/recovery is going.
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Kia ora to a fellow antipodean. I had my surgery at the end of October. They took a fair chunk of tongue - something that horrified me at first. Now I'm used to the idea and have found that it is not so uncommon - partly thanks to this site.
Moreover, my husband was having physiotherapy last week with a woman he had known for some time. He told her about my "hemiglossectomy" and reconstructive surgery. She had had the same thing when she was a young mother! He then thought he could detect a very slight speech defect - that was in retrospect so really doesn't count.
My advice is that you should enjoy your food and drink while you can before surgery because you might be on mush for a while afterwards.
All the best for your surgery.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Dec 2009 Posts: 63 | thanks to you both for checking in :o)
am definitely enjoying my food at the moment! have two big dinners planned for this weekend!
stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Hi Jp, welcome to OCF. The absolute best place to be when you need friends and information. My husband has/had (still waiting for more tests) scc which started like yours. Only he neglected to go to a doctor until it was in the advanced stages. But so far, so good for him which I'm extremely thankful for. Glad you found us and keep your positive attitude, it will help you in ways you will never imagine. Good luck with the surgery.
Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | 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 | JP,
Welcome to this site. Use it often.
Did they mention radiation post surgery. Oral cancer that starts in the tongue is particularly aggressive.
As was mentioned above eat eat eat eat and then eat some more right up to the time when they say don't eat.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | JP,
Listen to David, he is wise. Eat, be merry and by all means do not underestimate this cancer, you may only get one chance to knock it out so make sure you are getting the best possible medical advise/treatment available.
Good luck and eat!
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | JP,
I second everyone on here. You have a found a great place to get help. We are here for you and each other. I had surgery in October to removed a portion of my tongue and am now doing rads and chemo to ensure it doesn't come back a third time. Cry, rant rave, and vent all you want to. Yes, eat to your heart's content while you still can.
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: Mar 2009 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | JP, As all have said, you have found a great site. My diagnosis was much like yours. I had radiation and chemo which ended 7 months ago and I feel great now. Good Luck.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Welcome JP, lots of great advise here, great friends too. Davidcpa was correct about the rad and chemo. I live in southern CA and I think they almost will always follow surgety with radiation. Check with your oncologist.
We are all with you
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
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