| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Please take a few minutes to add a signature. It really is very important. I sent you a private message (PM) a while back with a link. In that link is important info to help you learn the forum and to make a signature.
Check the My Stuff tab and on the drop down menu, select messages. The same info I sent you is also under the New Here, Read This First section in the thread titled Forum Etiquette.
Thanks!!!
ChristineSCC 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  | | | | | Joined: Nov 2013 Posts: 29 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 29 | Welcome to the forum!
I have found a lot of great information and hope here.
My husband is scheduled for surgery next week with his second opinion doctor (at the CCC) who doesn't feel the neck dissection is necessary at this point.
I qualify as a control freak too, so I have been taping the doctors (I ask them first).
My husband makes lists, takes notes, and asks questions.
Best luck to you and your husband,
Patty
Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Just my opinion here but I would definately seek another opinion before I opted for the surgery part especially considering chemo/rad will likely follow. I had zero surgery and I am sooo glad I didn't.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | Zero surgery here as well. Also glad I didn't.
Last edited by ChrisN; 11-25-2013 07:34 AM.
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 71 | I had no surgery either. First doc wanted to do neck dissection. My "second opinion" tumor board doc opted for radiation/chemo and then wait and see about the nodes. They were clear in the PET taken 4 months after treatment. I had Base of Tongue cancer (BOT), Grade 4. Probably HPV according to docs. I was gung-ho for the follow up surgery until i found this board.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Another with Zero surgery to the tongue (my primary was BOT.)
Full disclosure: I did have surgery first, I had a large (tangerine sized) lump under my right jaw removed. The path report on the lump provided the diagnosis that it was a metastatic tumor in a lymph node, and it was oropharyngeal carcinoma.
It took nearly 60 days for them to discover the Primary tumor, which as I said, was in the very base of my tongue (and the size of a golf-ball.)
We talked about the possible need for robotic surgery, splitting the mandible and the down side of that, and elected to go 8 weeks of rads with 3 applications of Cisplatin, 3 weeks apart, and re-evaluate things after a post-tx PET scan. That revealed no detectable cancer, and no further need to consider the surgery.
Good luck!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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