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#84991 11-28-2008 01:07 PM
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Hi,
Just found this site. Ten days ago found out result of biopsy had SCC. A week ago, had surgery to remove 1.1 cm x 1.5 mm tumor from tongue/floor of mouth with skin graft from my thigh. No ND, as the CT scan of the neck prior to the surgery was clean. Clean borders, tumor removed, and T1NXMX stage diagnosed. I guess I'm lucky it isn't worse.
My ENT gave me 2 options: 1) ND pro-actively now or 2) monthly monitoring and quarterly neck CT scan and ND as soon as something shows up, for 2-3 years.
I need more information...

a) can the cancer spread only to the neck lymph nodes or to other places?
b) should I get a scan of the entire body, beyond just the neck CT scan, to make sure it didn't go somewhere else?

I'm waiting for a 2nd opinion appointment at a local cancer care center...

I'm 37 with zero risk factors. I'm still in disbelief/denial.

Sophie


SCC on right edge of tongue & floor of mouth. Removed 11/20/08; all clear. T1NXMX. Pre-surgery neck CT scan clean.
sophie08 #84993 11-28-2008 01:33 PM
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Sophie,

Usually if this cancer spreads it does so thru the nodes in the neck as they are supposed to act as the bodies filter in that region so if the nodes are clean it's a pretty safe assumption that this cancer was limited to the oral cavity. If I were in your shoes I would opt for your doctor's number 2 and you can always get another opinion from a Comprehensive Cancer Center assuming you haven't already been treated by one.


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.
davidcpa #85005 11-28-2008 05:07 PM
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Sophie,
It can also spread through the blood (tumors send out thousands of cancer cells into the blood stream every day but most, if not all, are taken out by the immune system) and also can end up in places where the blood goes through transitions such as the lungs or liver. It can also migrate throught the respiratory system, esophagus, etc. Some of the HPV induced cancers can also appear in the anus and no one knows the etiology behind that.

You are early stage with unknown mestastesis or nodal involvement. Did they perfrom a PET or PET/CT prior to treatment? That can rule out a lot of things plus verify the tumor as well.

You should be getting option 2 regardless of whether or not you get a ND ("watchful waiting").

Typically stage 1 tumors are treated by surgical resection only.

A ND done after the fact is also called "salvage surgery".


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
davidcpa #85006 11-28-2008 05:10 PM
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Sophie,

As you can see by my signature, I had the same staging as you, but I DID have the neck dissection. Although my neck CT scan was clear, it was my surgeon's protocol to recommend the neck dissection. There is no standard for the recommendation of neck dissections, however his particular feelings were that he could only tell for sure that the nodes were clear by removing them.

I hope this doesn't confuse the issue for you, but will give you some additional information to possibly help you make a decision.

Because the lungs can be a site for metastasis, I do get a chest x-ray once a year.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
wilckdds #85013 11-28-2008 06:26 PM
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Sophie,

I also had SCC flor of mouth and the surgery that you describe with the neck dissection. As you can see in my signature, my cancer recurred two years later. From this site I have learned that follow up PET/CT's are done. My original oncologist looked at me one day post radiation and said "you don't need me anymore." I never had another appointment or PET/CT. I feel this was a big mistake. It won't happen this time - I will insist on follow up testing.

I say get the second opinion, learn all that you can (this site has a wealth of info), and insist on followp testing - yes some of it is visual, but by the time my second tumor was visible it was over 3 cm.


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
sophie08 #85020 11-28-2008 07:22 PM
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Sophie,

I was just diagnosed w/ SCC on my tounge as well. I am going for my scans tomorrow to make sure that it hasn't spread! Welcome to the site! Everyone has been very helpful!!


*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!



MrsGrant #85030 11-28-2008 10:02 PM
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I know that one person's experience can't take the place of good medical advice, but my tumor, while in a different place, was a T2N0M0--T2 because of the size and the length of time we figure it had been there. Because of that, even though my scans were clear for any metastasis, my dr. recommended a neck dissection for two purposes: 1. to remove any stray cells that might not have been picked up on the scans, and 2. to hopefully prevent any cells yet to spread from having a pathway.

So far so good.

I am very, very happy to have had the ND. He was a little apologetic when he recommended it, and I said that I was very happy to have that done. I did not have radiation, so this bit of insurance was fine with me!


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
August #85032 11-28-2008 11:02 PM
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Hi Sophie,
I too am newly diagnosed with SCC of right lateral tongue, 2 cm, just had my bilateral node dissection 8 days ago and seem to be recovering well. It certainly is a doable option in my opinion. I would encourage you to get more opinions also as in my research I have found there are no set protocols with this fairly rare cancer. I had 3 or 4 opinions and they were all at least slightly different. Then you can go with the one that fits best in your situation and that you are most comfortable with. Everybody has different fears and expectations so the answer might be different for different people.
Good Luck!
Lucinda


Lucinda 52 y.o. no risk factors -dxed 11/10/09 w/ Right lateral tongue SCC 2cm, bilateral neck dissection with 3 nodes positve on right, Induction chemoTx followed by ChemoradioTx, last Tx 4/3/09, PET/CT 11/8/09 showed no sign of recurrence.
lucifen #85211 12-01-2008 06:39 PM
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Thanks all.

In response to Gary, I did get a CT scan of the head/neck prior to the surgery and it showed no indication of the lymph nodes.

Does anyone have a recommendation for the best cancer treatment center in Virginia? I'm trying to get an appointment at VCU's Massey Cancer Center in Richmond, but there might be a better place?

Sophie


SCC on right edge of tongue & floor of mouth. Removed 11/20/08; all clear. T1NXMX. Pre-surgery neck CT scan clean.
sophie08 #85218 12-01-2008 07:52 PM
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There a quite a few people from Va. in here.. One will get back to you soon I bet. Richmond,, Va Beach, Alexandria and a few more cities.


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
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