 
#17818 06-28-2005 08:27 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Thanks Dani! Congrats on the clean scans for your Mom!
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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#17819 06-28-2005 08:32 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 got the results back from the cell block. It was NEGATIVE for HPV (P16) using Immunohistochemistry testing on the tissues removed in the FNA from 06-08. This is terrible news for me, since I was hoping all along it explained the source of the cancer and also increased my odds of survival. Now I feel so defeated and I haven't even begun to fight. In despiration, I am moving forward with the MRND and Radical Tonsillectomy tomorrow at Stanford. This is despite several conflictory opionions, even as late as this morning from various Drs stating that the Erbitux is my best 1st line of attack and that surgery impairs it's ability to rach affected areas. Please keep me in your prayers. It is scheduled to being around 1:30 PM.
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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#17820 06-28-2005 08:57 AM | Joined: Apr 2005 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 58 | A) You have NOT been defeated! Period.
B) As you say, the battle begins now. First and foremost attack it as if victory is a foregone conclusion and the battle is an inconvenient, banal non-event.
C) Have faith in the Drs. you have chosen. Medical science is as much art as it is science. That is what a Nobel Laureate from the Howard Hughes Medical Institute once told me.
D) You will do great! You have lots of spirit, just focus it!
All my best.
Tim
SCC Right Tonsil, T2N1M0, Dx 12/04, Tx 40 radiation (180 rad), 8 Chemo (carbo), Tx ended 3/15/05, Selective neck dissection 5/24/05, 22 nodes, 4 levels, no evidence of metastatic malignancy!!! :-)
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#17821 06-28-2005 09:50 AM | Joined: Jan 2005 Posts: 191 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2005 Posts: 191 | I have no doubt that we will be hearing about you or even from you after you have successfully made it through surgery.
Probably all of us have been where you are at. That horrible panicky state where you are still in shock from the diagnosis and before treatment begins. Speaking for myself, it was the scariest fricking period in my entire life. Perhaps foolishly, though, I still haven't made out my last will and testament.
More people than you know are pulling for you.
Jen | | |
#17822 06-28-2005 09:56 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Thank you Jan and Tim.
I can't express how much everyone here means to me.
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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#17823 06-28-2005 10:08 AM | Joined: Apr 2005 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2005 Posts: 44 | OK, here's my tough love voice as a Mom of 2 grown kids and a small grandson plus StepMom to 3 way grown kids and StepGranny to their 4 pretty big kids: YOU HAVE JUST BEGUN TO FIGHT, YOU ARE YOUNG, STRONG, SMART & LOVED. "Knowing" what contributed to the cancer you have does NOT have much to do with beating it. Your attitude DOES. You've done your homework, have a great support in your folks & your partner and good medical care available. Count your blessings and put your boxing gloves on kiddo, you got plenty to LIVE FOR! I know you're scared, hell, we all are, but that's part of living--it's just a feeling and you can handle it. Holding you & Seth in the light of good thoughts, especially at 1:30 pm PST on Wednesday! Ciao, Tina
Daughter of 75-yr-old Dad with tongue cancer (T3NOMO) surgery and rt neck dissec 4/27/05; completed 27 X IMRT on 7/01/05; recurrance w/ surgical removal of another SCC tumor on 10/7 (he's also nonHodgkins lymphoma survivor since 1/94)
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#17824 06-28-2005 11:36 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Michael
You have become a much valued member of this board.
We care about you and will be sending the MOST positive of vibes your way.
Lots of love
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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#17825 06-28-2005 11:36 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Well said Tina and Tim, Michael I will also be thinking of you tomorrow.
Consider turning "desperation" into inspiration.
Take small steps and look no farther than minutes or maybe hours ahead. (living in the moment) You can always carry the load just make it light enough.
If your are like me this is the first time you are going in for any surgery much less cancer. I do remember while in the waiting room for surgery that I was putting myself in the hands of my doctor. At that moment the fears subsided. Tim's words are sage: put your trust in your doctor's hands, let them do the worry.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#17826 06-28-2005 12:21 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | I'll be thinking positively for you also, Michael. Time to forget the 'whatifs' and concentrate on the 'whatis'. Love from Helen
RHTonsil SCC Stage IV tx completed May 03
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#17827 06-28-2005 01:18 PM | Joined: Jun 2005 Posts: 21 Member | | Member
Joined: Jun 2005 Posts: 21 | Michael,
Jerry has had his 4th rad today all is well.He has had alot of heart burn and indigeston in the week.It never use to bother him.He said his throat is getting sore but he is still able to eat.LPN is a practical nurse.I worked in varies fields of nursing but never oncology.My ms is relapsing. I was just diag in Dec. I was wondering why I had gotten so clumbsy in the last year or so.I still get around I am a little slower and watch my steps. I stay real tired.As far as my mother vascular demntia is caused from small strokes she was never aware of.Her memory is fading.Even with all this we have a happy household.We will all survive this one way or another.You must always keep a positive attude.That is the most important thing.
Good luck with your surgery you will be in my thoughts and prayers
Karen | | |
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