| | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) |  "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I agree - been there - done this - TWICE. Get the radiation. It will save you life. And get it from a Comprehensive Cancer Center. This is an aggressive cancer and you need to react in the same manner - aggressively. Leave no stone unturned in your quest for a cure.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | Jim, If you had a positive node then you are a Stage III regardless of how small your Primary was and regardless of if they took out all the nodes they THOUGHT were suspect. As others have suggested you need to get another opinion and going to a CCC ( http://www.oralcancerfoundation.org/resources/cancer_centers.htm ) is the best place to get the best opinion, in my opinion.
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: May 2009 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2009 Posts: 27 | I had all the faith in my ENT, but went to a CCC then another for confirmation. This is an agressive kind of cancer that seems to have no qualms spreading to lungs, spines and kidneys. As with all tretments the choices are always yours,
Age 63, occasional drinker, smoked for 40 years
Base of tongue, stage 4,T-2,N2B
Cisplatin 1xweek
30 RT ended 6/25
PEG removed 8/23
PET Scan shows scaring but believed no tumors 9/25
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Its simple really.Do you want to live with a few problems,or die?My husband was a fit healthy young 44 year old.He was diagnosed stage 1 and given a 90% chance of ten year plus survival.He had all the surgery,then rads to both sides of his neck,tongue and floor of his mouth,he wasn't offered chemo because the ENT /oncologist didnt think it was necessary,and three months after treatment he was dead.
You dont play pick and choose with this disease ,that bullet in the chamber may just be loaded.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I see you making decisions based on the wrong criteria, like scars, nerve damage and even the PEG (Pour the food in the tube vs drink the food, barf it up and have to drink it again...) -- IMHO, your judgment is flawed, perhaps just seizing on the things you can easily understand.
Your ENT is just one person; likely a CCC will see more cases like yours in one year than he will in a lifetime of practice.
You are risking everyone standing around your coffin remarking "He looks great without scars"...
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: May 2009 Posts: 113 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 113 | OK guys!!!! Just so you all know if you read everyone elses posts other than my idiotic 1st post then we can stop the ripping! lol, I have gone to Moffitt and have decided to go with the radiation treatment full blown on left, tongue and right side regardless of what my ENT says! I was very naive and trying to take the easy road thru this, I have now accepted that there is no easy road and I would rather deal with all the side effect down the road then not! I will be starting radiation in Approx 2 weeks. and most likely (still havent fully decided) concurrent treatments of Cisplatin X 3 or 6 smaller doses! Thanks for all who responded! This thread should be saved and automatically read by any new member that signs on here....lol! Will keep you all informed! | | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 | Jim:
I'm very relieved that you decided to do radiation. Although it seems like a barbaric way to treat a disease, it's still you (our) best chance for beating it.
Best of luck. Keep our posted so that we can help you through all of this...
Sandydt
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Jim- You are very brave. I know it is NOT easy to accept what you have to deal with. We've all been through this acceptance phase...its tough...We are here for you along your journey.
You have a great attitude!
Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Jim, I believe in you buddy, you can beat this thing! Good luck with tx, remember chics dig scars, pain is temporary but glory is everlasting! Conquer this sh!t, keep you chin up and good luck soldier!
Eric
I agree with you though, people on this board can be harsh sometimes (including me) but they all mean well and are all dealing with the nightmare this disease brings. If people sound harsh it's only because they care and are passionate about it. I may disagree with some people on this thread but I know they all mean well and actually care when they post so I don't let it get to me, I just see it as a testament to how much they care.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Jim It is my belief the=at you just had to think things thru. Anyone named Jim just likes to be positive about things. LOL
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
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