I have said it here many times before, I am not an advocate of surgical only solutions to these cancers. The rate of recurrence in those patients far exceeds those that have radiation or chemo the first go around with the surgery. Sadly too often these recurrences go unnoticed by people until they are very advanced, and there is little that can be done. Most of the recurrences happen within 24 months from micro mets that were left untreated (and not visible) at the time of the original incomplete treatment. The balance mostly happen in a period under 5 years.

Brian - I know you have said this many times. So why do the top rated places like MD Anderson still not recommend radiation and/or chemo? I know I went there wanting the absolute best treatment - I didn't care about the easiest way to get this done and thank goodness I am lucky not to have to worry too much about the cost of travel there. But they said no radiation even when I questioned them. It makes me nervous all the time, and I know I've had this conversation with others on the site.

On another point r/t MDA - what are we going to do about getting ALL their head and neck surgeons and nurses on the OCF bandwagon. I've emailed you about this before. I am willing to help in any way I can - I will be there in a week 1/2 and unfortunately my visit is turning into a longer one than I planned due to some extra tests I need to have - I am willing to do some unofficial surveys and campaigning during all the wait time I will have! Let me know your ideas - you also have my personal email in one I just recently sent you...

I must have had that email go into my spam filter or something. If you need literature to take to MDACC, send me a PM with you mailing address and I will get stuff to you on Monday.

As to your other question, I cannot believe that a person at MDACC went through a tumor board of all these different kinds of doctors, and came out with a surgical only recommendation unless their lesion was a carcinoma in situ or a VERY early stage one disease. When I state this opinion about surgical only solutions I am generally referring to ENT's that do surgery in the US, that do not routinely work with a multidisciplinary team, and there are plenty of those. That group I specifically want to have their patients go through a tumor board that include radiation and chemo guys, not to mention dental oncology people as well.

Brian,


Would it be fair to say that their are always Micro mets ?

Shar

Not if it is truly in situ, that is local only.

M

Markus is right. in situ lesions are VERY localized and have not really invaded deeply into the tissue even. It is the earliest possible moment of a malignant lesion. Obviusly without invasion there is no metastasis

OK , But I mean in a stage 1 or 2...?? Like I was a one but close to a 2 as far as the size of the tumor..It was barley under if right at 2 cm

Hi Sharlee,

Let's see if this will help you. I had stage 1 in 2004, had 1/4 tongue removed. Had no other treatment at that time. (this was just in-case it came back I would have the option.) It did come back in 2005 so it had already spread, but could not be seen in earlier year. So Then I had Surgery in 2005, Neck dissection, Rad.& Chemo. Here is my point, if I would have had the Radiation the first time, I would not have been able to have it again when it was truly needed. They can not radiate the same area twice.

My caution to you is keep all CT scans every 3 to 4 months. I did not get the scan after the first surgery. (it was a oversight in scheduling) It is important to learn and be your own advocate. I learned that here on OCF.

Hope this was of some help.
Take care,
Diane

When I had surgery in august,, the margins were only 1.5 mm. The Dr said he had it all and the margin was large enough not to worry about. Well 3 months later I knew it was back and now I have to go thru the teeth removal and seed implants. I wonder if this happened because I am in a cancer study? I did post that a local radiologist said I need the rad and if not it would probably come back. The big guys don't know it all..

I know there are NO guarentees..regardless....but I do find myself questioning the NO rad thing...And as my one year anniversary of my diag approaches I find myself questioning more.

I also have a new sore under my tongue,,it has been there like 2 weeks. I saw ent on the 4th ,he says it looks viral. Like I am comfortable with that ...That is what they told me the 1st one was. It has gotten bigger. it is sorta on bottom of tongue sort of on floor of mouth , kinds hard to describe.

Even Joe has said it has increased in size. I called Dr , he still has not alot of concern , but told me to come this week. So I need to find time...I just started a new job and Gabrielle has 2 appts for her surgery next week...ughhhhhhhhhhhh

Then the whole micro mets conversation .......


shar