| | Joined: Dec 2009 Posts: 3 Member | OP  Member
Joined: Dec 2009 Posts: 3 |
Palatal Gingiva #2&3 Squamous Carcinoma hpv16. awaiting results of mri and pet scan, concerned about survival rate. Unknown as to how long i've had this, I thought I was just having sinus infections, then went in for a tooth ache. any feedback appreciated. g.
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | welcome to the forum! i know that awaiting test results can be stressful. just remember, you are not alone.
this group can enhance your knowledge about your disease and replace feelings of helplessness and uncertainty with a sense of control.
sharing your experiences here can provide a rewarding alternative to coping with this alone.
we try to help each other to cope with problems that we all share.
dont fret about the % that your are given by the doctors--its just that...a number.
focus all your energy on survival.
please let us know what the PET scan shows and what the doc says.
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: 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 | gj,
Where is the Primary? Base of tongue, tonsils?
Where are you being seen?
What Stage did they Dx?
Any Tx suggestions yet?
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: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Gi,
Much help here you are in the right place. Many folks here have been where you are going. Keep us posted on the PET and what TX they reccomend
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!
| | | | | Joined: Dec 2009 Posts: 3 Member | | OP Member
Joined: Dec 2009 Posts: 3 | Many thanks for the responses, helps a lot. I'll keep posted as to PET and TX results.
I'm told there's a significant amount of surgery and stuff to remove, hard palat, teeth and upper jaw plus radiation, possible chemo to shrink tumor prior to surgery. Also
awaiting meeting with tumor board at UCSD.
Again many thanks, this thing really caught me off guard, and have been a bit spun
since, g. | | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Gi, UCSD is a great place you are in good hands
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!
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | GJ,
UCSD has several excellent dedicated Head and Neck Oncology Surgeons with very impressive credentials. I am sure you will see or hear about Dr. Kevin Brummund.
Dr. Brummund, was the guest speaker at our last months SD County OC Support Group meetings. You are in good hands.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | GJ,
Welcome to the group. I am as healthy as ever. Good luck with the treatment.
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | gj-
After being diagnosed with SCC of the hard palate in April, I had a palatectomy and maxillectomy last May, followed by chemo and radiation -- got through treatment and am getting back to "new normal" now.
Do you know what part of your palate they are planning to remove? How many teeth have they told you they need to take out? Will you be getting an obturator (prosthetic device) afterwards?
Those of us with the hard palate location are not all that common. I hope I can be of some help to you as you go through this. Feel free to ask anything!
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
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