Although I am sure Eric is correct that some doctors guess at the statistic they quote, Most (if not all) NCI designated Cancer Centers participate in the NCI's SEER(Surveillance,Epidemiology, and End Results)and SRP (Surveillance Research Program)programs along with maintaining significant databases of their own.

The NCI states that the SEER Program is the nation�s authoritative source of cancer incidence and survival data
from population-based cancer registries covering approximately 26% of the U.S. population

The number of data elements collected in SEER is more comprehensive than for any other national cancer surveillance system. SEER includes data on patient demographics, primary tumor site, tumor morphology and stage at diagnosis, first course of treatment, and follow-up for vital status. A repository of tissue specimens and a collection of biomarker information from laboratory health records.

Statistics are very interesting. As far as I'm concerned both Eric and Don can be right about doctor's statistics because in terms of you and cancer, statistics offer zero guarantees only a chance to gauge your risk. Statistics cannot tell you whether you will be one of the unlucky 15% (your doc's numbers?). SEER numbers cannot, no CCC can.
If the cancer does come back, will you regret not taking radiation? But if you are part of the lucky 85% it'll be a gamble that payed off.
I confess to a negative bias on oral cancer survival & recurrence statistics as the SEER database give me a very poor chance of making 5 years.
If your music playing is important and if it would be compromised by radiation, I can understand taking the risk since you can do the radiation if it does.
Still because of the facts that DonB set forth, I could always get my RO, MO and ENT surgeon to give me not only SEER statistics but a recommendation based on their own practice and hospital database for each of my crucial decision points.
Charm

Let's also keep in mind that until recently HPV orally was hardly ever tested and since an HPV positive SCC fares better than an HPV negative one, all the previous statistics about oral cancer could be misleading and that is why ever since 2006 I have been pushing to separate the 2 "pools" by encouraging all posters that fit the HPV profile to get tested.

I think I tried to play a bugle, and it didn't go as bad as I thought. Of course I haven't tried that for years and didn't expect much more. My lips are still whole not like everything behind them.

David,
Specific to Crolsen's diagnosis; I don't think cancer of the Oral Cavity (floor or mouth) is caused by HPV.

Unless something has changed, historical SEER data and statistics should be reasonable for most any OC that is located outside the oropharynx (throat).

This tread has turned into a very interesting discussion about statistics and numbers. I would like to try to redirect it back to Chuck's situation and head off a total hijack!

[quote=crolsen(Chuck)]Hi everyone!

I'm a brand new member here. I just had surgery to remove a squamous cell carcinoma from the floor of my mouth on July 21. The surgery was successful, The tumor was clean around the edges, and the lymph nodes were also spotless. Now, I'm trying to put my life back together.

I am married to a wonderful wife (13 years) and have three beautiful daughters (10, 7, 2). I am a musician. I play trumpet in a rock n roll band. I've also recently begun training to be a competitive powerlifter. All of this at the ripe old age of 47.

The decision for radiation therapy is entirely up to me. I'm kind of caught between the benefit of a few extra percentage points vs. the possible side effects and what that could do to my livlihood. My wife [Amy] found this website. I'm glad she did.

...The problem is that my radiology oncology doctor WOULD NOT recommend one way or another. [/quote]

Chuck,

I think you see by the responses you have received, many here would recommend that you get another opinion at a CCC. You mentioned that you have been seen at the Mayo Clinic. One more professional opinion might really help with your decision.

To receive good advice from OCF members, some more information is needed from you for us to understand what your particular situation is. Needed information already mentioned by members in this thread: Stage? Tumor size? Grade?
You have already told us: Clear margins from surgery, Clean lymph nodes (did you have a neck dissection?)
Perhaps if you could go to your profile and compose a signature with this information, that would help.

Each one of us is different, and to best help you, you need to provide more information about you SCC and its treatment so far. The folks here on the forums are extremely knowledgeable and are so willing to help!

I wish you and Amy the best, and hope you can come to a decision you are comfortable with. Please keep in touch and let us know what you decide.

Peace,
Catherine

Margaret, you're right on the money when it comes to the competition in the music biz. Cutthroat is a mild euphemism. It's also true that this treatment is debilitating - like you it's taken me months and months, more than a year even to get back up to 80% of what I was.

Ultimately of course Chuck will have to decide for himself. We're all different. Chuck, I think all the advice you're getting from people more knowledgable than I is good. A second opinion is never a bad idea!

David 2

I can't help with all of the facts and statistics (there are many here who are WAAYYY more qualified for that than I) but I might be able to help a little bit from a different perspective since I've been dealing with various issues of illness for the past 20 years (I was diagnosed with MS at 19)

I think Charm mentioned a very valid point "if the cancer comes back, will you regret not having had the radiation?"

The only thing we can do is obtain all of the information possible and then make the decision that is right for US--because that decision is different for everyone--then if the information changes, re assess, and make a new (or not) decision based on the new information. Make peace with that decision, whatever it may be and know that it was the right decision for you whatever the future holds.

I had to make some really difficult choices regarding the treatment for my Multiple Sclerosis (potentially life threatening) I made my choices, made my peace with them-and never looked back. Trust me, I had family member who had serious issues with my decisions... We have enouph problems without second quessing the future. I had to make the same type choices regarding my cancer. Talk to the person/poeple whose lives are mostly closely linked to yours (mine was my husband) and do what's right for you.

Be well,
Michele

I would get another opinion on the radiation. The first shot at beating this is the best shot. If it comes back it can be harder to deal with. K

When I was diagnosed, my local team was professional enough not to tell me my statistics. It's irresponsible, plain and simple. As a numbers guy I pushed for the information because I thought that it would help me make the right decisions, when my RO gave me the perfect answer: "Eric, your percentages are either 100% or zero, you are either going to make it through this or you won't. It all depends on how YOUR body responds to the treatment."

SEER will only tell the Dr's so much...and even then it will tell them ABSOLUTELY nothing about Chuck and how his body will respond...or about Chuck's surgery, or surgeon, or immune system etc, etc... SEER will tell the Dr that out of 100 people that were similar to Chuck's demographic, staging etc, 80 of them responded a certain way, which still tells him nothing about Chuck or Chuck's specific situation.

Of course you can always ask the families of stage 1 victims that died what they think about the 90% chance their loved one had to live...yeah that should drive home the point of percentages.