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Joined: Mar 2015
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Hi Adam. I'm new at this myself, having received a preliminary diagosis on March 26 this year that was confirmed via scan the following day. My diagnosis was very similar to yours.

I was given the option of surgery-before-radiation, with the possibility of chemo-radiation if surgery showed cancer cells had escaped the lymph node. Or I could have just gone the radiation/chemo route based on what they saw in the CT scan, with possible surgical follow-up. I chose the surgery-first option for two reasons. The first was that I just wanted the d***ed tumor out of me, and the second was that the neck dissection would show conclusively whether we had escaped cancer cells - meaning that chemo might not be necessary.

In my case I'm ending up with the trifecta (surgery, radiation and chemo). And I feel pretty good about that because we're throwing everything possible at the cancer. Surgical recovery time was about 2 weeks, although I took 3 off work just to be sure I was fully rested. And it feels really good to have the tumor(s) gone!

I've learned a lot from the folks here about the toxic side effects of chemo-radiation, and that has helped prepare me for what's ahead. You'll get the same great information and support here to help you make your decision. Best of luck.


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
Joined: May 2015
Posts: 8
adam c Offline OP
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Wow, Peter!
Sorry to hear you went through this as well.
Here's my worry about surgery. Years ago, I had a horrifying experience with a catheter coming half way out while I was awake. They tried to put it back in but were hurting me. It finally did go in, but I'd prefer never having that inserted again. Can you believe THAT'S one of my fears about surgery?
Did you have to have one?
I also worry about surgery in general but they're proposing robotic surgery and/or laser trans-oral surgery?? I'll know more tomorrow but really appreciate your advice.
Thanks!
adam

Last edited by adam c; 05-19-2015 03:47 PM.

52 years old, P16 positive (HPV) Primary tumor is in my tonsil, 2 lymph nodes under chin are affected.
Joined: Apr 2015
Posts: 91
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Posts: 91
HI Adam, glad you found this site. I used to live in L.A., lots of great medical centers out there. Sorry to hear of your diagnosis. It does sound like you have a supportive family and that's important.
It sure is scary. I have always been a "toughie" but this just knocked me off my feet. Still scared as a matter of fact. But there is lots of hope as noted by so many posters on this website.
Good luck to you. Keep us posted.
Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
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Posts: 8
adam c Offline OP
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Thank you so much, Denise! Big meeting today with the chemo/radiation doctors and surgeon. I'm anxious and nervous to hear what they recommend I begin with, but I'm ready to move forward.
Again, thank you.
Sincerely,
Adam


52 years old, P16 positive (HPV) Primary tumor is in my tonsil, 2 lymph nodes under chin are affected.
Joined: Mar 2015
Posts: 55
PJE Offline
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Joined: Mar 2015
Posts: 55
Hey Adam. I *did* have a catheter, but they neglected to tell me about it. The funny thing about that was that after I got back to my room and tried to pee for the first time it burned like crazy. When the nurse asked what was wrong I told her, and then she told me about the catheter. So for the rest of that night whenever I had to go it was pee a little, tighten up because of the burning, pee a little....you get the picture. Kind of like my Labrador when he lifts his leg on a tree - coming out in spurts.

As to the type of surgery, I was hoping for TORS but they couldn't get the robot without a 2-week delay. Rather than wait I had the TOLM which worked out fine. My surgeon does both and said there are certain advantages to TOLM because using the microscope allows for easier/better viewing of tumor margins.

Hope your consult today went well. Let us know?


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Posts: 3,267
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How did the meeting go, Adam? Hope all went well!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 8
adam c Offline OP
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It went well.
I believe I'm leaning towards doing the surgery first. Take out the cancer. Analyze the tissue and then go for radiation and possibly chemo...but one step at a time.
Thank you for your support!


52 years old, P16 positive (HPV) Primary tumor is in my tonsil, 2 lymph nodes under chin are affected.
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,267
Likes: 1
Sounds like a plan. Good luck!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Mar 2015
Posts: 55
PJE Offline
Supporting Member (50+ posts)
Offline
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Joined: Mar 2015
Posts: 55
One step at a time is a daily mantra for me. Your plan is the way I went with my diagnosis, and I haven't regretted it. It just feels good to have that primary tumor gone! Best wishes Adam.


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
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great choice... as long as you are happy with it that's terrific. Best of luck here's to hoping it happens quickly, goes well and you get a favorable pathology report back. hugs!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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