#58750 08-09-2006 12:22 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi All, just wondering if anyone here has had to have anything (doctor not sure what it is) removed from flap side and biopsied. I totally trust my oral surgeon, he is the best, he told me he doesn't think it is c. which of course, is wonderful news, but I am still nervous.....it just kind of popped up, they took it off yesterday and I go back in a week. Thanks, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#58751 08-09-2006 01:25 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Carol,
aren't you being followed by your ENT or Head & Neck surgeon and getting regular checkups??
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#58752 08-09-2006 03:14 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Absolutely...I see my Head and Neck Surgeon every 3 months, ENT the same.....this just kind of crept up on me, I might have bit down on it and not even realized it, it is numb. In fact, I still see my oncologist every 6 months although I am 4 years out now.....trust me....I don't play around anymore with this stuff! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#58753 08-09-2006 05:48 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Carol,
believe it or not we run across a few here who fail to do their followups. Myself personally I would see an ENT or my H&N surgeon before I went to an oral surgeon. I bite myself all the time. I didn't realize that the flap is so close where you can bite it. I was told, when that was an option, that there were few nerves in the muscle tissue that make up the flap, so it's probably easy to bite and be unaware.
I am over 3 1/2 years out and I go every 4 months to the H&N surgeon and every 6 with the RO and the MO. The H&N guy's telling next year I will go every 6 months until 5 years and then annually asssuming, of course, that everything remains consistent.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#58754 08-09-2006 06:54 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Gary, I bite myself too. I had the flap revised last year because it was lifting a bit in the middle, but it has always seemed a little large, mine is about 1/2 of my tongue. Thanks for your input....Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#58755 08-09-2006 07:07 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey Gary,
Can you believe that I have NEVER heard from my radiation doctor after one visit with him when I was done. I called there a number of times as I assumed that I was supposed to see him like I see my ENT, but never got any response. Is this common?
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#58756 08-09-2006 07:09 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey Carol,
I also bite my lip alot where it's numb and one side of my tongue has never felt the same since radiation so I bite it alot also. Let us know what you find out, fingers and toes crossed. I have a gut feeling it's nothing.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#58757 08-09-2006 09:06 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Carol
I just wanted to let you know we are thinking of you, and praying this is much ado about nothing.
Take care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#58758 08-09-2006 09:16 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hey Minnie,
My RO is more agressive in some ways then the H&N Surgeon. She likes to put on a latex glove, go deep, in the throat and palpate the tumor bed. Then she usually has a resident poke around as well. She specializes in head & neck disease and IMRT. She's also outside of my HMO plan. so go figure. I just LOVE the tatse of latex (but then at I CAN taste it;-)
The H&N guy is more into a couple of tongue depressors, mirrors and palpating my neck for enlarged nodes.
I haven't been scoped since just post Tx. The RO also orders my annual MRI which my HMO dutifully obeys (they are read twice - by a radiologist at Kaiser and then again at UCSFCCC) and then they swap reports. She has me bring her a CDR of the MRI's so I always burn a copy for me too (like I know what I'm looking at). I can see why they pay these guys the big bucks. Around here even x-ray techs make 6 figures.
I've bitten myself so bad at times my lip looks like hamburger.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#58759 08-10-2006 02:15 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thanks to all....I too am keeping fingers and toes crossed! Thanks again, Carol p.s. I tell you, he took a good bit off of my flap to biopsy, Thank God it is numb!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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