#45156 07-06-2005 02:41 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | thanks.
I've given a lot of thought to floride trays and am leaning against them, even if recommended by my dentist.
I am finding more and more links to SCC recurrance and floride in various studies so I am trying to filter that information.
You make a good point about planning though and I appreciate the feedback.
In fact, seems radiation itself has a statistically significant result of recurrance from the radiation itself.
Of course, it could be the classic "chicken or egg" thesis...who knows.
Be well...Michael
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45157 07-07-2005 06:59 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | I just heard from the surgeon with bad news on the path results  He said there were 3 nodes positive (of the 59 removed) He also said that there IS perinural involvement (whatever that means), AND angiolymphatic invasion (again, not sure what either of these means EXACTLY), so I said..."that sounds bad.." He said.."No, VERY bad..." I asked about the cell differentiation and he said it looks like "Moderately Differentiated", which I am guessing is Grade II. He said the path DID confirm clean margins at least on the primary. So much for a beautiful day!! :-(
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45158 07-07-2005 10:20 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Hey Michael, I just posted a response to this in the other topic under Introductions. Also remember that "bad" or even "very bad" are *statistical* in nature. It means there may be more of a likelihood of something you don't want to happen happening in the future, but it doesn't mean it's a foregone conclusion. You are an individual, not a statistic.
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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#45159 07-07-2005 11:49 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | I know. I find myself latching on to the statistics quite a bit.
I just feel so scared and anxious.
They first told me that my stage IV usually has a 50 - 50 chance of 5 year survival at Stanford...This was before we knew about the additional node(s) and the 2 other places it has invaded.
Can anyone else tell me comparison to their pathology results?
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45160 07-07-2005 11:54 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Does this mean I am T2N3 now? Stage V..?!
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45161 07-07-2005 12:38 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Doesn't matter what you are Micheal. The stat's mean nothing to you or I. We will either survive or we won't. The thing to focus on is your treatment and survival. You are just starting on your journey, don't give up before you've begun the fight. It's a long and bumpy ride but many have traveled it and survived. You can To!!!
All My Best, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#45162 07-07-2005 02:06 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Michael, I know full well that Doctors are not infallible[I was married to one for 18 yrs.] I do know that specialists have a tremendous amount of training and you can't possibly learn what they know in a few months. You've got to put your faith in someone and go for it. We are pulling for you. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#45163 07-07-2005 02:10 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Michael,
I second the whole it doesn't matter what stage you are. After my moms so called "recurrance" her ENT said that she could no longer be staged after we `.
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#45164 07-07-2005 02:17 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Sorry about that my 2 year old just started hitting the keys.
After we heard that we no longer thought about staging and statistics. Try to stay positive. I know how difficult it can be and how much the human mind tends to wander but try not to dwell on the statistics.
Sending you prayers and hugs,
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#45165 07-07-2005 02:49 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | It's so hard not to get caught up in the statistics, especially on life threatening issues one knows so little about.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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