| Joined: Jan 2011 Posts: 25 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 25 | I have a question that may spark some debate but I am very interested in the opinion of others. If you look at my signature, I am wondering if you would go with a more conservative doctor or aggresive doctor. It seems to me, some people with the same diagnosis as me, have undergone a neck dissection with the removal of nodes. My doctor discussed not having that done at this time. My SCC was found laterally on my tongue. After speaking with my doctor today he described it as "superficial". Invasion was present: depth <0.1 cm. I would like to hear other opinions. The people who are T1 SCC, and had a neck dissection/nodes removed, was yours more invasive than mine?
Thanks for taking the time to reply.
Yvonne
Age 35 Superficial SCC lateral tongue HPV(-), nonsmoker Right lateral tongue resection 1/17/11 w/ Alloderm Graft Proud mother of 2 Enjoy walking/aerobic kickboxing Pittsburgh Steelers Fan! (#86)
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Different surgeons follow different protocols. there is no standard treatment. If you look at my signature you will see that I had a partial glossectomy and 30 nodes removed. That was suggested by my surgeon and I was more than willing to go along with his reasoning for doing it.
There are many members that would disagree with that treatment option, but I am almost 6 years out and am very comfortable having had the neck dissection.
A debate MAY follow!!!!
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"
| | | | 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 | HPV- go with Mr Aggressive.
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 2011 Posts: 25 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 25 | David, It is HPV negative. I wasn't sure if you were thinking it was HPV +. HPV negative, would you go with aggresive? Thanks, Yvonne
Age 35 Superficial SCC lateral tongue HPV(-), nonsmoker Right lateral tongue resection 1/17/11 w/ Alloderm Graft Proud mother of 2 Enjoy walking/aerobic kickboxing Pittsburgh Steelers Fan! (#86)
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Yvonne,
Mine was also T1 SCC. I saw a top doc at Penn (excellent hospital in Philly) went for a 2nd opinion with the top doc at Sloan Kettering (same doc that treated Michael Douglas) and my doc that I actually see at Fox Chase and they all said the same thing. That the cancer should be treated surgially only with a partial glossectomy (4 actually) but it was only cancer once in 2007. All the others were a precaution because I had some white spots..it was always severe dyaplasia.
I think in order for you to feel at peace with your decision, you should at least go for a 2nd opinion. As you can see I had 3 from some very good doctors and that is why I can rest at night.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Yvonne, I went into surgery knowing that I had one 'involved' lymph node and came out of it with three. The difference not only changed my staging, it also changed my follow up treatment protocol to a more aggressive route - Erbitux added and additional radiation. I do have numbness on that side, all the way up to my ear, a large scar and some muscle tightness, but I'm still here and doing well. I think that's a pretty good outcome. - 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: Jan 2011 Posts: 25 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 25 | Thanks you everyone. I just got off the phone with one of the doctors and had all my questions answered. I am very happy to say, but feel bad for others who are going through much worse, that the tissue showed very superficial (microscopic) amount of SCC - not invading the tissue.
Age 35 Superficial SCC lateral tongue HPV(-), nonsmoker Right lateral tongue resection 1/17/11 w/ Alloderm Graft Proud mother of 2 Enjoy walking/aerobic kickboxing Pittsburgh Steelers Fan! (#86)
| | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Yvonne, I was diagnosed in Sept with superficially invasive scc of ventral tongue, 1 mm deep, if that. Very small, not supposed to do anything. It did. I think it depends upon the histology as well. Mine was moderately well differentiated, so not terrible, but apparently some wilder cells got away.
You are probably ok. My doctor at MD Anderson said he had never seen a small tongue lesion such as mine metastasize, and he had seen lots of cases. So that is why he wanted me to go through radiation. The lymph node was also small, but apparently with some microscopic EC extension, so the chemo got added. The surgeon thought he had gotten everything but they are all cautious here.
Don't mean to upset you or muddy the water, but there it is. Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | Joined: Jan 2011 Posts: 25 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 25 | Thanks, Anne. You didn't upset me at all. I'm always happy to hear everyone's story.
Age 35 Superficial SCC lateral tongue HPV(-), nonsmoker Right lateral tongue resection 1/17/11 w/ Alloderm Graft Proud mother of 2 Enjoy walking/aerobic kickboxing Pittsburgh Steelers Fan! (#86)
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Forgive me. Call me crazy but I think aggressive is the way to go. Everyone is an individual. Everyone's body responds differently. And while most doctors are pretty accurate when it comes to making their decisions, they aren't 100 percent. There is always that one case that they think "won't" or "shouldn't" but does... Cancer is cancer. Go after it with both barrels blazing. That way in the end... you don't find yourself saying... "I should have..."
As you can see from my sig. I too have a SCC lesion on my tongue. It is a fair size, stage 2 though no metastacies was shown three weeks ago during my MRI. I am still having a hemiglossectomy R/T size - but also the neck dissction done, and if they tell me I will need radiation I will do that too.
Cancer is not something to mess around with. If the means to fight it is at your disposal, then do whatever you have to to make sure it's gone. Best of luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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