#58750 08-09-2006 01:22 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | OP  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 02:25 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 04:14 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP 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 06:48 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
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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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#58754 08-09-2006 07:54 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP 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 08:07 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 08:09 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 10:06 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 10:16 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 03:15 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP 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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#58760 08-17-2006 02:22 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi, good news on my biopsy, benign. Thank you for your prayers and good wishes! 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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#58761 08-17-2006 03:10 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 |
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#58762 08-17-2006 11:38 AM | Joined: May 2003 Posts: 102 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2003 Posts: 102 | Hi Carol,
I'm sorry I missed what you went through but I sure am very happy that everything is OK. What a relief. I'm sorry you had to go through this scare.
God bless you and keep you safe.
Niece to Aunt Ro- Dx: 4/03. SCC Stg 4 BOT with mets to fl of mth & crvcl lymph node. AdenoC 1 sal gland. Two add. reconstrc. surgeries for adhesions. Recurrence 7/06- Sub-Mand AdenoC. Mets to both lungs. Lost her battle 5/4/07.
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#58763 08-17-2006 12:22 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Minnie,
I haven't seen my RO since the end of treatment either. I did have to go back for breast rad so I saw him then but the last visit I had with him was the last weekly checkup for the breast radiation. But he was from Roswell Park and only working temporarily at the local Roswell Park Radiation place --which is attached to our local hospital--until they hired a new full time RO to run it (which they had done by the end of my breast radiation). Before, while he was treating me, he was commuting back and forth to Buffalo (a 3 hour drive each way) a couple of days a week for a year. So I'm not too surprised I don't get followup from him. Although in some ways I wish I did because I seem to have much worse effects from the rad than many people and that may have ad something to do with his radiation plan--I'd like him to know if so.
Carol, that's great news that all is OK!
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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