| | 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 | As Brian points out and I know all to well I had no as in zero, nada, zip symptoms in my oral cavity to warn me or anyone like my dentist that I see every 4 months that I had anything suspicious occurring in my mouth. The only thing I first noticed one day shaving was the left side of my neck looked more muscular than my right side. No pain in my neck nor my mouth. No sore or raspy throat. No weight changes, no appetite loss, no energy loss, etc. I ignored my neck for about 3 weeks more before I showed my wife and WHAM, 2 months later I am a Stage IV. Thankfully a recent study has concluded that HPV+ SCC responds better to Tx and (therefore) has a lesser chance or reoccurrence or I would have been much worse off. Imagine if all tobacco based SCC, which has proven to be a much more formidable foe, started off as Stage IV's.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | A friend of mine locally discovered his tumor in much the same way -- He woke up one morning and the side of his neck hurt, so he went to Doc (Luckily, I would have put it off) -- Doc barely felt hard spot which was later determined to be SCC -- Don't know the stage, but they caught it early.
He and Doc said it was lucky he was slender because it was buried waaay in deep and might not have been found early had he been overweight.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | SSC starts in the Oral Cavity and once it spreads to the nodes it is automatically Staged a IV.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 |
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 | Brian,
Then why do you think I was Staged a IV as I was told I only had 2 positive nodes on my left side?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Same with me David -- I had one clinicaly involved node, , between 2 and 3 cm as I recall,and one more that was microscopically involved.
I was under the impression that having more than one node was automatically staged IV, with size coming into play as well.
Don't get me wrong -- if you want to call me Stage III instead of IV, I ain't going to complain! ;-)
Seriously, I would be interested in seeing more on this.
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | David - I said this wrong in the first answer. What I should have said was a single node does not put you into stage four. If you read the staging outline you will see that other things besides nodes can bump you into stage 4, along with multiple nodes. Some people have a huge primary and that alone is enough to do it. As the staging page says, this is only to determine possible guidelines (which are only a base line recommendation) of treatments, and a means for doctors to describe you to each other in a simple way.
Stage 4 - Any of the following may be true: The cancer has spread to tissues around the lip and oral cavity. The lymph nodes in the area may or may not contain cancer. The cancer is any size and has spread to more than one lymph node on the same side of the neck as the cancer, to lymph nodes on one or both sides of the neck, or to any lymph node that measures more than 6 centimeters (over 2 inches). The cancer has spread to other parts of the body.
You can see how generalized this is, (cancer has spread to tissues around the oral cavity--- how much spread, how invasive this is WAY generalized) and therefore far from a definitive description of what actually is the situation. TNM was developed as a better means to classify patients. Please also remember that this is not a universally accepted system, and is very general by nature. The TNM system is much more finite and used more when specifics are required.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 |
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 2007 Posts: 35 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2007 Posts: 35 | Hi, I need to chime in here. I had an occult tumor, not visible with a scope or a mouth exam. The only indicator was one Level II lymph node that was swollen to about the size of a green grape. A biopsy of the node was suspicious for metastastic cancer. Surgery and a further biopsy confirmed scc and determined the right tonsil harbored a 8 mm tumor, hidden in the folds of the tonsil. I ended up losing the tonsil, a salivary gland, and several more lymph nodes--only the tonsil and one node was positive for scca. I suffered through IMRT, but now am recovering nicely (although I will probably never be the same, either mentally or physically). After reading the thread above, my case is consistent with an HPV based scc. My doctors never have tested me for HPV. Should they? Or is it merely an academic issue? It may make me sleep better at night knowing that HPV based scc has a better prognosis. But is it "medically" necessary to determine whether or not HPV is involved? Thanks, Oscar Stage IVa SCCA, rt tonsil, (1) level II node (3.2 cm). No ECS. Neck dissection, 30 IMRT. Spared chemo because no ECS. | | |
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