| | Joined: Sep 2010 Posts: 26 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Sep 2010 Posts: 26 | Hello,
I have been lurking on this site for a week or so, and love all the valuable information you all share - thank you!
My 44 year old husband, was recently diagnosed with SCC of the tonsil. We have had a CAT scan, PET scan and have seen many Drs with the Radiation Oncologist being just yesterday.
I have a question: 2 of the Drs (ENT and Oncologist) say that he doesn't need surgery and that radiation will give same results) BUT it seems to me from reading this site, many folks DO have surgery? Now when they did his biopsy they did take out most of his right tonsil (70% of it) due to it being ulcerated..so maybe that is wno surgery?? Actually we aren't really wanting the surgery due to the complications but want to make sure we cross off all options.
Also are most radiation oncologists offering the same type of radiation? or shouldwe be looking for a head/neck specialist or cancer center? Thanks so much!
CG to 44 year old husband, Dx: 9/23/10 SCC T2N0M0 (Right Tonsil)
Radiation only started on 10/13/2010
13/33 Radiation Treatments done!
| | | | | 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 | I went to 5 different cancer docs before I was satisfied with the recommended Tx which included radiation and chemo( due to nodal involvement) and NO surgery. Three of the 5 had recommended surgery so I was glad that I ended up at Moffitt which didn't see the need for it pre radiation and so far so good. Certainly the recommendation for surgery depends upon many many factors including the location of the primary and even the presence of HPV. Have his cancer cells been tested for HPV?
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: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | The only surgery that I had was the removal of my left tonsil, I went thru induction chemo and then 7 weeks of radiation with weekly chemo and so far no other surgery. It all depends on your indiviual situation!! Hope this helps some. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Go get another opinion from a CCC and let them decide. These places handle many cases of OC and would be the best to decide. It's possible the ENT and Oncologist that said it wasn't necessary are right but be sure.
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: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Welcome to the boards. If Charlotte is convenient to you, let me know. My aunt had absolutely wonderful care here. I completely trust her ENT and surgeon.
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | My North Carolina boy had rads/chemo only with a T4 Base of Tongue/Tonsil cancer. His tumor had crossed the midline of his tongue slightly.
So far, so good...we hit the three year mark on October 1. So far, so good but I am waiting for our trip to Moffitt Cancer Center for a checkup in November to shout out our three year anniversary.
Knowing what I know now, I would call for an appointment at a CCC and take those records for a second opinion. They will most likely back up the treatment plan you now have but that plan will come from a team of doctors that see this everyday.
I know how you are feeling at the moment..I still remember the ton of emotions and the weight of what was happening. Try to shove that to a corner for the moment, call a Cancer Center and get that appointment. Once you have that second opinion, come back here and we will help you thru all this.
Hugs, Deb
Re: North Carolina...hubby is from the coast (Beaufort) and graduated from NC State.
Last edited by debandbill; 10-01-2010 04:46 PM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Welcome, I had great results at Duke. Very very happy with Drs there. They seem to know thier business. Let me know if I can assist in any way
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: Sep 2010 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2010 Posts: 26 | Thanks everyone for your warm welcome!
I can't believe how quickly things are moving along! It was only on Sept 2nd that John visited the dentist for a routine exam and now today, 4 weeks later, he was fitted for his mask!
We are going to see a Dr at Wake Forest to get one last opinion, (on surgery) but we are learning more towards radiation (and our Oncologist said he doesn't even need the Chemo! so thats a blessing!)
CG to 44 year old husband, Dx: 9/23/10 SCC T2N0M0 (Right Tonsil)
Radiation only started on 10/13/2010
13/33 Radiation Treatments done!
| | | | | 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 | Has he been tested for HPV?
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Welcome!
Sounds as though you are weighing options. That's a great thing. My wife and I have talked frequently about our choice of the surgery first, then ending up having Chemo/Radiation TX anyway, etc., etc. Gather all the information and facts you can, get the best team you can, put your head down and go forward! There are several thought processes and pros/cons out there on the treatment options. Bottom line for me is it all worked out and we're grateful. Do your homework, follow your heart and believe in your choices.
Warm Regards,
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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