| 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 | 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
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | David old buddy, you always hit the nail square on with good advice. The advice david just gave you is very good ,Chuck.
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | 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.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | 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
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | 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
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | 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??
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Mar 2010 Posts: 21 Member | Member Joined: Mar 2010 Posts: 21 | 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
SCC, R Lateral tongue, T1N0M0, Diag: 3/15/10 38 yrs old at diag HPV Neg, Non Smoker Non Drinker 4/12/10 Partial Glossectomy, No Rads or Chemo 7/15/10 excision biopsy L mid posterior tongue - NEGATIVE
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | 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.
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 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | 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.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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