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Joined: Apr 2017
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Stef H Offline OP
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Hi all,
I received the pathology report from my TORS; they took 6 samples (and most were at least 2cm in size - this explains the pain!)
The samples were taken from the left palatine tonsil, glossal pharyngeal sulcus, tongue base, vallecula, oral pharyngeal wall at the epiglottic fold, and at the midline tongue base.

Here's the key info:
"Histological sections of left vallecula biopsy demonstrate tonsillar tissue with a 0.2cm focus of non-keratinizing squamous cell carcinoma...No perineural or lymphovascular invasion identified. No carcinoma is seen in the remaining biopsies" This is really good news (and time to update my signature!)

The tumor board will review the results on Monday and make a recommendation (my guess is radiation.)

A few comments on pain:
I was totally unprepared for the pain and learned today the pain will be there for 6 weeks. I am taking oxycodone (5mg) every 4 hours and gabapentin (100mg) every 8 hours and it's very painful to swallow or eat anything. Pushing through as I know hydration and nutrition are the keys to healing. Really wish I didn't have to take a narcotic.

Anyway, just wanted to share my TORS experience. It has taken nearly 2 weeks to recover.

StefH


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Joined: Oct 2012
Posts: 1,275
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If you are going to have rads, chances are you will get throat pain again! Are you able to swallow with comfort right now? Maybe you would like to eat your favorite food in the interim. The treatment for head and neck cancer does seem like a never-ending cycle of pain. In preparation for rads, make sure you get all your teeth checked and any problems dealt with. It will be so much harder to do work on the teeth post radiation.

Do let us know what the tumor board decides and if you need further treatment.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Stef H Offline OP
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Joined: Apr 2017
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Will do! Had a dental appointment before surgery. May have a second since they really beat up stuff in there.

I wish I would not need radiation but they set up an appointment to discuss options on Thursday smirk

I realize I need to changed my mindset and be grateful for access to treatment.


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Joined: Apr 2017
Posts: 81
Likes: 2
Stef H Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 81
Likes: 2
Update:

They decided to pull tooth 19 (which had several root canals) prior to radiation. Also discovered the previous pain was due to gum damage during TORS.

Will have 30 radiation sessions beginning 6/13. No info yet on the number of Grays (Gy)

I go in for simulation tomorrow.


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,275
Likes: 7
Thanks for updating, Stef. Like you say in your signature, "Keep Fighting!"


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jun 2017
Posts: 3
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Posts: 3
Hi Stef,
I just joined and saw you're going to Stanford too!
I was just diagnosed this month, and met with the Oncology team and had the 2 options presented;
1 was the TORs surgery with the possibility of RAD after and the other was Radiation treatment.
After a number of meetings I opted for just the 30 RAD treatments which I'll start 6/14. (I'd love to say hi if our paths cross at Radiation!)
I have a T1N1 left tonsil and 1 lymph node and I think I'll be receiving 66 G at the tumor site.
I'm nervous about the potential of difficulty swallowing and mouth sores but am optimistic and will fight to get nutrition in. I've got a couple bags of my favorite vegan shakes (shakeology) and will mix it with almond milk and avocados. Nutritionist seemed to think I'd be on the right track.
Let's keep each other motivated through this too ok!
I'm so impressed with the cancer team there.
dreading the drive in from Hayward for 6 weeks but I can call on my "Joy Fight club" village to help out and I have two sons (17 and 20) that can help some.
best
Joy


Diagnosed in May with T1N1 Left Tonsil HPV cancer and 1 lymph node affected
Opting for 30 RAD treatments over the TORs surgery as I wasn't confident I wouldn't end up with RAD either way
starting treatment 6/15 and I believe 66 Greys
Joined: Apr 2017
Posts: 81
Likes: 2
Stef H Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 81
Likes: 2
Hi Joy!

Somehow I missed your comment and sent a direct message after seeing your introductory post. I hope you are doing well! Let me know if you would like to connect.

I usually have afternoon appointments with the exception of Thursday mornings. Today is session 12 for me.

I wear geeky science t shirts to make my team at Linac 14 laugh. I also show the desk team the toy I received in the "radiation advent calendar" my partner made for me!


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!

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