Brian advised me to search for occults on the site which I did. My doctor did not advise me on the possibility of occults. I have had surgery only. The site in the mouth was removed and also several nodes in my neck as the sentinel node could not be located. The guidance I received from my Dr was if the sentinel node was clean (he is sure one of the nodes that was removed was the sentinel node), then the odds of cancer being somewhere else was extremely low. All my nodes and margins came back clean. My speciman was also free of what I will call "areas of concern" which were also looked for.

However, I read the comments on occults as even with the above clear results, there is a ~29% chance that I have cancer that was undectected as it is too small, hence the need for raditation to make sure everything is cleaned up.

Additionally, I have not had PET or MRIs, lung xray only.

I would greatly appreciate any insight.

Thanks for any help.

If I were in your position, I would be knocking on doors to get radiation. I say this because of what I have learned on this site, not based on any medical knowledge I have. I think many people face this cancer a second time and it's really just an extension of the first go around that wasn't taken care of with the first treatment.
Good luck with making your decision.
Minnie

I second Minnie enthusiastically, John. My surgery for stage IV and nodes, too, had clean margins, but I wasn't willing to take the gamble, and two years out, I am here and feeling terrific, so I think it was a good move. Look at it as insurance. This cancer is not anything to fool around with, and I would seriously recommend hitting it with the one-two punch of surgery and radiation.

Amen Joanna I agree, then you want look back if you have any problems later and wish you had done it before!

While you have sent me this question as a person message, since you have posted it here it thought that I would answer here. Before I read this post which said that you had the normal scans of your neck done, I was inclined to say that a one-in-four chance wasn

John,

I too, was T1N0M0, and my doctor did not recommend radiation. I did have a CT w/contrast prior to surgery, all nodes removed at levels 2 and 3, a total of 23 and all were clear. My case was presented to the Tumor Board and radiation was not recommended.

I just had my one year check and had repeat CT w/contrast, chest xray and labs... all were great. After a year of reading this board, this topic tends to make me uneasy. Maybe that's why I am had my strange dream... see thread "Humor". All I know is I am feeling great, reports are great, and maybe I am reading this board too much!

Take in all the information, talk to your doctors, get a second or third opinion and make your decision.

Good luck to you!
Sincerely,
Lisa

Chiming in with Brian, without the MRI's (or CT in some cases -or both for that matter) and PET scans and other diagnostic information how could they properly stage your cancer? Without accurate staging information it's impossible to develop an adequate treatment plan.

The CCC I went to would NOT start treatment without them. Additionally they insisted on TSH, hep C test and a battery of blood chemistry tests, not to mention examination by a dental oncologist. They took videos and stills with a scope. All of the pieces had to be in place - no exceptions.

The chest x-ray they gave you, especially the first one is a "baseline" - they don't expect to see cancer in that one - it's for comparison purposes for future scans to see if metastesis (or other changes) to the lungs is happening over time.

Obviously they followed SOME of the NCCN recommended "practice guidelines" (standards for detection and treatment for cancer).

We're not trying scare you but recurrence can be a very ugly thing indeed and ANYTHING that can done to prevent that is critical.

This is why we recommend over and over to seek out a comprehensive cancer center for diagnosis and treatment.

And Brian 1 in 4 is worse than Russian Roulette - there are 6 cylinders in a revolver - that's a 1 in 6 chance!

Personally I don't even like one in six, but that does bring up a question...not that I'm a gambler, but since you spin the cylinder each time the gun is pased back and forth, I suspect that you always have a one in six chance, but there must be some mathematical radom possibility/probability as to how many times you can spin it before that one cylinder comes up. I guess the argument might be that no matter how many times it is spun, the odds stay the same. At least that's what the CA Lotto people say, it is just as likely that 123456 will come up as any other selection of numbers, including those that have won in the past, since it is always a complete random selection of all possible numbers. Now that we have hijacked this important thread, if anyone wishes to help me out that really understands this stuff, please start a new thread, on non cancer odds.

Dr was very up front with me. He gave me three options for treatment.

1) Surgery on the site in my mouth only and Dr visits every week.

2) Surgery on the site and removal of the sentenial node. If the sentenial node proves to be cancerous, a neck dissection would then be done.

3) Surgery on the site and a neck disssection.

4) Radiation in cases 1 - 3.

What swung my decision to option 2 and no radition was the Dr's opinion that if the sentenial node and margins were clean the probability of the cancer existing elsewhere was in the 10% range. That way I still have all the radition bullets in my gun in case of reoccurance. When the sentenial node was not identified, we elected to take out all the nodes in the right side of the neck and all proved clean, which added to my comfort level.

If the probability is ~30%, and I have not even received adequate testing to see where we are, then that is completely different.

Could someone be so kind as to lay out what the normal testing protcol is and also any information on the sentenial node theory? I would be greatly appreciated.

Note that the Dr freely admits that he gave me more infomation and allowed me more choices then he typically does. The Dr is head and neck cancer specialist.

Thanks,

John

John,

In some cases I believe the "normal" test protocol dosen't exist. It sometime falls into the category of "gut instinct". Unfortunately there is no protocol that is 100% predictable. The recommendations fall into percentages towards or against a certain outcome.

What everyone here is saying is you should be well advised (which you may already be) and explore every advantage when dealing with this cancer. Second tries are much less succcesful with this SCC. On the other hand radiation is a beast to go through.

You are in a difficult position because of the options you still have. If I were you I would seek several more opinions from the best professionals you can find. NOT because your doctor is wrong, but because YOU need to make the right decision. Right now I think you need more information to make that decision.

take care