| | Joined: Mar 2010 Posts: 7 Member | OP  Member
Joined: Mar 2010 Posts: 7 | Both ENT Doc's I have been to recommend surgery immediatley before any chemo is done. I have read where chemo can be done first to shrink the tumor (mine is stage 4 tumor on left side of tongue) possibly saving more of the tongue. I have been told the tumor has really grown too large for chemo to help and I would like to hear if others have gone different ways on which they did first. I should mention the tumor is bad enough I can hardly speak and don't want to eat so I don't have much time to mess around with this thing. My reconstruction ENT has done hundreds of these with good success so I feel pretty confident I'm getting back about the most I can as far as speech and eating go.
Kent
Age 42/DX-SCC/T3-N2-M0 on left side of tongue 2-24-2010/Resection & reconstruction 3-17-2010/Reconstructed 2/3 of tongue with wrist tissue/49 nodes removed; 2 had cancer cells; one was encapsulated/ Incidental finding: Papillary Thyroid cancer/Treatment: 2 wks of chemo with 6 wks of rad
| | | | | 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 | Radiation is what shrinks tumors. When chemo is used with the radiation it gives the radiation and extra boost. Chemo alone does not work on OC.
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: 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 | Kent, Where in the world are you being seen? I can't believe the word RADIATION hasn't been used in describing your Tx. Please do yourself a huge favor and seek another opinion from a CCC ASAP. CCC's http://www.oralcancerfoundation.org/resources/cancer_centers.htm BEST CANCER HOSPITALS http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Kent, I had surgeries 1st and if I knew then how this would be, I would have had the rads and chemo 1st to see if it would have helped. I listened to the wrong Dr.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2010 Posts: 7 Member | | OP Member
Joined: Mar 2010 Posts: 7 | Sorry that's me getting my lines crossed it will be radiation along with chemo. I've had 2 opinions from ENT's and both recommended the surgery first and I was curious if anyone had gone with radiation first or even it it's ever recommendned. With the way this thing is feeling in my mouth I'm not sure how much time I have left to mess with this thing. I will check on a CCC and see if I can get in. Is the experience much different at a CCC?
Kent
Age 42/DX-SCC/T3-N2-M0 on left side of tongue 2-24-2010/Resection & reconstruction 3-17-2010/Reconstructed 2/3 of tongue with wrist tissue/49 nodes removed; 2 had cancer cells; one was encapsulated/ Incidental finding: Papillary Thyroid cancer/Treatment: 2 wks of chemo with 6 wks of rad
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Kent,
There is a case of a chef in Chicago (anybody?) who was on Oprah. He was advised to have the surgery you are having but kept looking for alternatives. He was eventualy treated at a CCC (I Think)without the surgery and is doing well.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Kent,
Sounds as though your diagnosis is very similar to mine and I have no regrets about having surgery first. My tumor went deep into my tongue, all the way to the back and I had extracapsular spread from one lymph node, putting me squarely in Stage IV. Removing the cancer from my body as quickly as possible and following that up with the radiation/chemo combination has worked for me so far (almost 2-years).
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Kent,
I totally agree with David...get yourself to a CCC right away! The team of Doctors at a CCC are the BEST. And you want the best people treating you, this is your life we're talking about!
Take care,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Kent,
Found the Oprah link to Grant Achatz (the chef)
Grant Achatz on Oprah[/url]
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 |
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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