Chuck,

Most likely you would not test positive for HPV meaning that your cancer has proven over the years to be more aggressive and more prone to recurrence than it's HPV counterpart. Being a CPA I always look at the numbers but they don't mean much in a potentially life or death situation but it has been proven that your chances of recurrence are greater with HPV negative vs HPV positive. What puzzles me is Mayo saying you only have a 15 - 20% recurrence chance when I see a large percentage of HPV negative posters here, with and without radiation, having a recurrence. What do they know about you and your SCC that would lead them to conclude that you have what I would call a better than most recurrence chance?

Even with radiation there is no guarantee that it will prevent a future recurrence and there is a school of thought that with a small, say Stage I tumor, with no nodal spread, etc, to save the radiation if and when it's needed and plenty here have done just that. It's their low percentage chance that strikes me as odd.

Just because I have more posts than anyone else and my name appears in RED that doesn't mean I know more than anyone else but knowing what I have learned about this cancer since 2006 and if it were me, I would press Mayo for their reasons for such a favorable recurrence risk and/or seek another opinion from another CCC before I made up my mind on further Tx.

David old buddy, you always hit the nail square on with good advice. The advice david just gave you is very good ,Chuck.

Hi Chuck,
The "surgery only" approach followed by "watchful waiting" was considered by my tumor board but they went with surgery and RT.

Looking back two years now, there have certainly been some advances (or at least changes) in the treatment protocols (Chemo and RT).

Radiation is pretty much a one time option, so even if it becomes necessary after a few years of "watchful waiting" odds are it will improve.

Although Mayo is highly regarded, it is always a good idea to get a second opinion from a another major CCC.

Hi Chuck, I can't speak to numbers and percentages and the rest, but I do agree a second opinion from another Cancer Center is a good idea. I do think, however, that in saying 'yes' to radiation you very well may be saying 'farewell' to your career as a trumpet player and while I certainly understand your desire to heal and just move on with your life, as someone who has lived for 19 years as a cancer survivor (lymphoma in '91 and oral cancer in '08), I'll also add that a cancer diagnosis is a game changer.

- Margaret

Chuck

It's a hard decision. Radiation is no longer a one time option if you are near any place with a CyberKnife as you can even reradiate tissue that had received IMRT radiation.
I guess the key is "do you feel lucky?" A recurrence is brutal and in my opinion, much much worse than any possible radiation effect. I agree that a second opinion from a CCC would be your best bet if your RO won't make a recommendation.
Charm

Chuck, I don't necessarily agree with Margaret's assessment of your post-TX trumpet playing future. Margaret, if you have direct experience of this I will yield to your superior knowledge.

I used to be a professional flute player, and while I don't really play anymore I did take the flute out a few months ago - this was maybe a year after RT - and, although I sounded awful, I was indeed able to play. I do realize that there's a difference between the instruments (my brother is a professional trumpet player so I know the instrument well) I wouldn't assume that radiation damage would necessarily doom your chops. That said, we all must of course acknowledge that treatment is different for each of us. An absolute prediction is impossible.

If you wanted to try and learn more you might try posting to one of the online trumpet forums, see if anyone out there has gone through neck radiation. I know my brother posts to them regularly, and if you don't know the names of any, or can't easily find them, please send me a note and I'll get the name from him.

I know you're facing a tough, tough decision, but you're getting some great advice here!

Please keep us posted.
David 2

My surgeon based the decision regarding radiation on the "grade" of the cancer. I too had clear margins, and no lymph node involvement, but when it was determined to be a "high grade", it was a no brainer. If "Intermediate grade", which they originally thought, I would have had to make the choice but at "high grade" this made the decision easier, I didn't even have to think about it. I don't see anything in your post regarding grade??

Hi Chuck,
I had surgery (in April) but no radiation and no chemo. The Surgeon did an excision biopsy but then had to go back and do a partial glossectomy to make sure it was all gone and the margins were clear. I was 38 at the time (I turned 39 in May), HPV neg and meet none of the risk factors. At my 3 month check up, my surgeon had to an excision biopsy on a spot on the other side, but it was negative. I will be having a PET scan within the next couple of months, but I have decided (after conferring with my doctors) that I am going to watch and wait for now. I am paying attention to my body and we have all decided that if I have an occurance, then we will explore radiation. I hope this helps you at least a little bit. Be Well.
Michele

No direct experience with trumpet playing, David, but I know what surgery and radiation have done to my mouth and body and how long its taken to feel even vaguely 'normal.' Years ago, I played the oboe and remember well the level of work it took to be my best. I also know how competitive the performance/music business is and how quickly you can be forgotten if you drop out of sight for even just a few months. I could be totally wrong, of course, but like everyone else here, I'm offering my thoughts and experience and opinion.

The more you deal with Dr's the more you will understand that they don't know shit when it comes to percentages. They're guessing dude. An educated guess sure, but it's still a guess and this is with your life.

As a business man and poker player, I deal with percentages and projections all the time. I take calculated risks with money based on the knowledge I've accumulated over the years and it's really always paid off over the long term...but my attitude with money is that whatever I lose, I know I can make it back. Would I make the same decisions if it were with my life?

Now I've lossed half my face and almost my life to oral cancer. This shit doesn't play, it's unforgiving and if you lose, you lose your life. I'm of the mind that when I have an opponent down, I'll make sure the motherf*cker stays down by whatever means possible, especially if it has a chance to take me from my family. Don't play with this stuff...and ask your dumbass Dr if they would take their percentages if it were their life on the line.