Brian,

Thanks for everything you do on this site!

I had 2 things I am worried about and wanted your thoughts. I pressed my surgeon and pathologist on the issue presented in first entry on this thread. It was clarified that what I had was a scc lesion, (the "at least 0.9 cm) plus an extended area, ( the 3.5 cm length) of multicentricity; which is lots of tiny cancers scattered around; rather than a 3.5 cm solid tumor. This is a condition which is very prone to recurrences. When I asked about radiation for it I was told that you can only get rads once; so you don�t want to unless it�s the only reasonable approach. The recommended approach is to watch the oral cavity closely and resect the recurrences as they show. the doctor said if we have to cut out 3 or 4, then rads may be in order. This sounds logical but the impression I got from reading studies is that recurrences are a really bad thing.

Plus its obvious from the other posts on this thread that you can get radiation more than once. Is the �you can only get rads once� thing maybe for the ; like; 10% of folks that experience osteoradionecrosis?

.Thanks,

Mike

For most people radiation is a one time event. IMRT has changed this some but even with IMRT the total garys are high and there is a maximum lifetime dose.

You signature doesn't say when and by what kind of doctors you are being seen. In many cases at smaller institutions this kind of plan is not in my layman's opinion a good idea. Recurrences are dicy to get rid of in many people. Big hammer first time out has always been my thinking. Perhaps I'm just not that sophisticated, or perhaps I have seen too many people lost from screwing around with half measures in all this. As to getting it only once, if it gets rid of everything that might cause a recurrence so what? If you are a candidate for multiple primaries, that's another issue. I would have a stronger opinion if you told me you were at a top ten CCC, or if you were are a small regional hospital for which cancer is just part of the menu. There is a lot to be said about the team coming up with the plan. That is the single most important part of any avenue you take.

Brian,

I had my surgery at the Mayo Clinic in Jacksonville, Fla. The attraction was their use of TLM for oral tongue resections. Also, the US News rating shows Mayo as the #4 CCC behind MDA, MSK and JH. But there is no team. My physician is a top notch head and neck surgeon. I guess the #4 rating might be if you go to Rochester Minn.

Thanks,

Mike

SCC w/ multicentricity, lateral tongue, excised 12/08

Mike - I don't wish to beat this to death, but the whole point of going to a CCC is that you get a multidisciplinary team - not a single doctor, all with different training an backgrounds, and therefore different approaches to treatment planning, and usually what works out to be a tumor board type of multi-person decision of what is going to be done. Once that has happened, I would go with what ever the GROUP thought was the best thing for me to undergo. Lastly I would say that while this is likely a good institution, that Mayo in FL is not exactly like going to the home town nationally recognized Mayo. This probably accounts for how at a "Mayo" institution you do not have a team. Great guy or not, he has one perspective and one set of training.

Mike, I strongly support what Brian is saying. Remember one thing: your physicians specialize! A surgeon in surgery and a radiation oncologist in radiation.... etc. You get the idea.
You do not have to be concerned about potentially upsetting your surgeon. That is the least of your problems.

I did not have a team either but I made damn sure that the surgeon, MO and RO talked! In retrospect I would not recommend it although it worked ok for me (wife is a physician) Even so there were "hiccups" in the treatment.
A comprehensive plan including dental issues before during and after treatment is definitely the way to go. If you have a lot of tiny cancers scattered around then it will be difficult to get them all. I would want to get rid of them all and then start with a hopefully clean slate again rather than waiting for these tiny cancers to develop into something noticeable which you might miss or might migrate somewhere else.

M

Can any tell me anything about the cyberknife which is what my husband is going to have done. He already went thru 38 radiation treatments and chemo, but he now has a malignancy in his jaw. The cyberknife and Erbitux is our next avenue of treatment. I haven't seen where anybody has posted on this form of treatment. He will be treated at the Hillman Cancer Center in Pittsburgh. Another question, since his recurrence happened so fast, does that mean the doctor didn't "get it all" the first time. Brian, what do you know about the cyberknife ? Thank you. Claudia

I couldn't agree more.

I went to 5 different cancer "doctors" before I decide on Moffitt where I had the benefit of many doctors deciding together what the best Tx plan for ME should be and of course it was discussed with me before any Tx started.

Brian, Markus and David,

OK, I�m on it. Thanks much for your advice. I�ll update after I get a team evaluation.

Mike