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#194322 - 05/02/17 12:15 AM Freaking out slightly - TORS 5/9  
Joined: Apr 2017
Posts: 63
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 63
San Jose, California
I have trans oral robotic surgery on 5/9 to try to find the primary. (I had a "branchial cleft cyst" removed 3/6 but it was a cystic lymph node with P16+ SCC. Nothing detected by MRI before surgery or PET after. Biopsies done under general anesthesia also came back clear.)

I have asked the team about effects after surgery and the only answer I have received is it will feel like "the worst sore throat of my life."

They will remove residual tonsil tissue, the palatine tonsil, and "denude" an area on BOT, left side (same side as lymph node)

They also claim it is will be a two week recovery time which seems long to me.

Does anyone have experience with TORS? One way I control my anxiety around cancer is getting information. Guess I need some more coping techniques!

Thanks for reading,
Stef


Keep fighting friends!

Me -- currently 49 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!!
#194332 - 05/02/17 03:10 PM Re: Freaking out slightly - TORS 5/9 [Re: Stef H]  
Joined: Jul 2012
Posts: 2,996
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,996
NYC
Stef,

I have not had TORS, but from what I understand, at least from some reports, TORS endoscopy can find the primary tumor in 80% of the cases of an unknown tumor in the oropharynx. Robotic surgery may also have less incidence, if any, for a trache procedure during surgery, a lesser hospital stay requirement than conventional surgery would, and fewer peg tube requirement/length of use, and better swallow function, after treatment, if any, such as radiation, if it helps any.

The are just averages or from particular study cases, and it depends on the individual, and other factors, such as how surgery goes, but your doctors are more experienced with this, and know your particular case, and general health. Maybe someone who had TORS or this type of surgery can offer than insight.

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy, Fibular Flap, Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#194368 - 05/05/17 03:02 AM Re: Freaking out slightly - TORS 5/9 [Re: Stef H]  
Joined: Apr 2017
Posts: 63
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 63
San Jose, California
Paul,
Thank you for the thoughtful reply. A bit embarrassed able my post right now because I am so lucky to have the opportunity to have TORS.

Last edited by Stef H; 05/05/17 03:03 AM.

Keep fighting friends!

Me -- currently 49 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!!
#194371 - 05/05/17 03:51 AM Re: Freaking out slightly - TORS 5/9 [Re: Stef H]  
Joined: Jun 2007
Posts: 9,747
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,747
PA
Stef, you sound like you are managing this very well. Do NOT ever be embarrassed about posting. If you are unsure ask your self... does my post have anything to do with oral cancer, treatments, recovery, etc. If its related to OC then ask away smile We're all in this together, we understand what you are going thru. We have had quite a few members over the years who have had this type of surgery. All have posted highly positive marks about how much better it was than conventional methods.

Wishing you all the best with your procedure next week!!! Please dont forget to post updates for us when you are able to.

Best wishes!!!!!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#194373 - 05/05/17 12:59 PM Re: Freaking out slightly - TORS 5/9 [Re: Stef H]  
Joined: Jul 2012
Posts: 2,996
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,996
NYC
Just repeating what Christine said, never feel embarrassed asking anything cancer related or feel quity of any type of care or your body response to it! I knew about TORS in 2009, and wanted it, just about when it was approved, and my hospital, and the otolaryngology chairman was one if the first do it after it was pioneered in a PA hosp by doctor Weinstein. My ENT didn't do TORS, which was a Da Vinci model I believe. When I asked about it with my ENT, who worked under the chairman, said it may not be for me, so I didn't persure the matter further. I also wasn't a member here until 2012, so I couldn't asked anyone questions, and pretty much had a Shot Gun education for good and bad until I joined, which was after my 4th or 5th recurrence.


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy, Fibular Flap, Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#194387 - 05/07/17 04:10 PM Re: Freaking out slightly - TORS 5/9 [Re: ChristineB]  
Joined: Apr 2017
Posts: 63
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 63
San Jose, California
Christine and Paul - thank you again for all the support.

This past weekend I traveled from San Jose to Chicago to attend my partner's 25th anniversary law school reunion. We also visited the art institute, the museum of contemporary art, and several wonderful restaurants.

Christine - I have taken your advice and am eating all of my favorite foods before Tuesday's surgery. Even things that aren't usually on my menu like chocolate cake. I think I've put on a few pounds since learning I need radiation.

Will definitely update everyone post surgery. They said pathology would take one week and based on their findings (e.g. if they find the primary, it's size, margins, etc) will recommend a specific course of radiation. Once that happens will send the plan to UCSF and Mayo for their reviews.

Where would be the best place to update post surgery on the boards?

Again, thanks so much. This support board has been instrumental in learning and not panicking.
Stef


Keep fighting friends!

Me -- currently 49 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!!
#194389 - 05/07/17 10:41 PM Re: Freaking out slightly - TORS 5/9 [Re: Stef H]  
Joined: Jun 2007
Posts: 9,747
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,747
PA
After surgery and waiting to know if you need rads, to post, I would say you can start a new post under the Currently In Treatment section. Since you have already been diagnosed you can start in that section anytime you want as you really are currently in treatment. Honestly, you dont have to sweat where to put a post, thats the least of our concerns! I can fix almost anything you do and can move posts to different sections at any time. Everything is fixable smile

Good for you putting on a couple pounds. Boy does that chocolate cake sounds delicious!!! Boy do I wish I could manage to eat something like that. MMMMmmmmm sounds yummy!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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