| | Joined: Jul 2009 Posts: 31 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2009 Posts: 31 | Hello all. Have been reading here for the last week. DX 7-13-2009, BOT SCC, lymph node maybe X3. Biopsy of tongue yesterday, no results yet. Scheduled for 39 rad starting Monday. Pet scan says no other organs involved. No neck disection yet, ENT wants to wait for results of next pet scan. Seems most here did it in the reverse? Is this odd? He says if nodes don't light up after next pet scan he is inclined to leave the neck alone? I'm in Chicago, going through McNeal Cancer center, can change if need be but doctors seem great. Ran into a section on this site with a "second opinion" link and can't find it now. Can anyone help me navigate there? Well thanks for the great info and like I said, I start tomorrow.
Rick
Age 50 at DX July 13 2009. T1N2BMO, stage III BOT-2 nodes right side, HPV negative, drinker-smoker, cisplatin x 3 IMRT x 39 70 GY, pegged and ported. Started treatment on 8-3 2009. Selective neck disection 11/30/2009, 9 nodes removed-neg pathology
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Welcome to OCF and be strong. It's a hard road ahead of you but so many of us have been through it and here we are. One bit of advice before things get going...eat, eat, eat, and eat some more. Everything you really like to eat because it's going to be a while before you can enjoy it again and you will be losing weight. (I went from 203 to 150). Beat of all things to you.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Sep 2007 Posts: 6 Member | | Member
Joined: Sep 2007 Posts: 6 | Dear ratface! Greetings! BOT SCC is usually treated with CT +RT. Have you asked about Erbitux yet? You have not clearly mentioned about the status of the neck on PET. Surgery post RT may not be needed if the PET doesn't light up. Keep your chin up mate! Dileep 
Dileep :-)
Ca Rt BM, T1 N0 M0, Surgery with palatal flap and STG 2nd Aug 2007.Here's to life. Dont let the pain get to you! Know that you are alive to experience it!!
| | | | | 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 | ratface, Please remember that an ENT is trained to do surgery (neck dissection) while a CCC http://www.oralcancerfoundation.org/resources/cancer_centers.htm reviews your case on a multidisciplinary approach where several experts confer and make recommendations so if I were you I would get a second opinion from a CCC before I allowed anyone to do a neck dissection. I saw 5 different doctors and 3 recommended ND's before rad and chemo and my CCC, Moffitt, said no ND first. I'm so glad I got multiple opinions before I made up my mind on who I would allow to Tx me. Also, have you been tested for HPV? You should consider that.
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: Jan 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 71 | Ratface, Welcome aboard. It appears our cancers may be similar. I had SCC BOT and lymph nodes. See my tag for my TX. I did not have surgery. You mentioned second opinion. My second opinion Dr. at CTRC in San Antonio said the school of thought for what I had is now treatment then surgery only if the treatment doesn�t take care of it. First dr. was going to operate and then follow up with the Rads and Chemo. At first I was planning on surgery after treatment because I wanted to make sure it was all out of there, but after reading this site during my treatment I realized that a lot of people get through this without surgery. I�m glad I got a second opinion. Dileep mentioned Erbitux. I was in a study for Erbitux (Cetuximab) that may not yet be filled. If you can get in on the same study that would be good. There are guidelines to be followed that are the latest and greatest. They will also make sure you get the follow up scans so their data will be good. The one stipulation that I know of is that the BOT tumor is at least 1.5 mm. Hang in there and be strong.
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: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Ratface:
I was in similiar situation. Went to a CCC for initial DX. He forcefully suggested I get a second opinion.(he came from Dana Faber..had an opportunity to be Dept Head down hear) and I liked the local CCC facility and the Drs. But he convined me based on his experience with OC that it is always wise to get at least 2 opinions to see if there are options, protocols available , just in case someone misses something, etc. This is from a guy who had treated OC for 10 years. Any way ended up having treatments at Duke (2nd opinion). Both recommended Chemo and RT with possible ND after treatmnet. As it turned out, I did have a modified ND, small maybe 6 inches after treatments. He wanted to remove dead cells and double check, although Scan came up clean.
In one afternoon out next day. Good luck in your battle.
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Ratface,, I had 4 opinions before anything, The one that recommended rads and chemo was right on, otr at least after I had the dissection and surgery, and was pronounced clean and didn't nee the rads or chemo :P: I sure as heck did. Had to lose my teeth, then had the rasd and chem nd then rad seed implants in my tongue. It's really hard to know which is right at 1st. Good luck and I am sure you will be fine.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Here's how to search the site -- There are three different areas to search. First is to use the search engine at the top of the forum pages to search this forum's archives for posts. Second & Third is to go to main page http://www.oralcancerfoundation.org and click on the search button at top right. This will lead you to two search engines, the topmost of which is to search the main site. The other search engine will search the news articles on cancer. Using the main site search, "Second Opinion" was the first hit http://www.oralcancerfoundation.org/facts/second_opinion.htm.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Hi there..sorry you had the need to find us but you are in the right place. My husband had chemo ( Erbitux) and RT first. When the lymph nodes did not go down (swollen) following the above, then ND was done. Had they gone down and the PET been clear, probably a different story. Hang in there! Eat, eat, eat. Enjoy it now! Good luck and keep us posted
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Hey there Ratface, sorry you received the diagnosis that led you to this forum but you certainly came to the right place for answers to just about any question you can think of. The people here are very supportive and eager to help others. My mother had Erbitux and it seemed to work well for her. I will be sending positive thoughts your way. Good luck!
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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