Who know what we will determine 20 years from now. We do lots of things without long term data to tell us what's what. Look how long we used DDT before it was banned. But TODAY, given the look into the this by the FDA and the CDC, they have found no trends that are alarming. Having said that, without being a conspiracy theorist, I don't think these to agencies have shown us that they are always on the ball.

Brian,

What have your experts said about this new group, as I described them, that we are increasingly seeing?

Glad I'm not alone.

I'm 22 and was diagnosed this winter. Initially I was having some esophageal problems and the nurse at the gastroenterologist actually noticed a lesion on my tongue during my pre-EGD examination. Had a partial glossectomy and selective neck dissection and everything looked good. Stupidly, I hurried back to school (albeit late) so that I could graduate on time. Just got home from gettin' learned, but I thought I had bronchitis. Chest X-ray/PET scan showed a spot in my left lung, so I have a biopsy scheduled for Wednesday. What a freakin' nightmare.

On a more positive note, I've been reading the messages here since January and I can't tell you how much of a comfort you guys have been. :]

Man lets hope for a clean biopsy. I had false positive scans to mentally deal with and the waiting is not fun.

Hey MrsGrant et al,

I checked out your blog, but wasnt sure how to contact you on the blog. My sister was diagnosed at 24 on 3/5/09. We are currently trying to make a tough decision about radiation. I was wondering what your experience (or anyone else around this age) had been and what your thoughts might be. Its so tough to consider radiation on someone so young. But we also understand the risks of recurrence or secondary tumors are pretty high. any thoughts or experiences on this?

We had a recent similar poster who fits her profile (Jim B) who after hearing what we all had to say and talking to Dr Trotti at Moffitt, has decided to do the radiation which I think is a no brainer under these conditions. IMO she can't wait to see if it returns. She must be aggressive now because if it does come back it may be to late. She needs to get additional opinions and hopefully from a Comprehensive Cancer Center. See below:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Her life may very well depend upon making the right decision now and she's already wasted to much time.

David,

She has been treated with 6 weeks of induction chemo and a big surgery on May 14th. Things have moved along as quickly as they possibly could have progressed. Camille has been treated at MD Anderson Cancer Center in Houston, TX. There has been no consensus opinion from our team at MDA. Everyone comes down "along party lines" as one doc described it. In what way do you mean time has been wasted? It has just been four weeks since her surgery? as far as we've been told this is well within the time frame for setting up radiation. more info??

I'm sorry your signature line says the surgery was April 14 so that's 2 months so which is correct? I just got the impression from your post that she was hesitating making her decision and I'm very surprised that MD Anderson has not yet reached a recommendation re further Tx. Regardless of age, this cancer and especially one that began in the tongue, is very aggressive and needs to be killed the first time. I would press MDA for their recommendation.

thanks for noting that David. The surgery was May 14. Our team and the entire Head and Neck center does not have a consensus opinion. They have met in a multidisciplinary setting and had a number of conversations. The issue is that the pathology report from surgery came back totally clean...no positive nodes and only one fresh frozen showed 'residual microscopic focus.' Apparently the pathologist wasn't totally sure there was residual microscopic focus, but felt she should 'call it' to be on the safe side. So the real issue is what is there to radiate if the path report was so clean, particularly in a 24 year old who will be 'signing up' for a set of problems she may or may not need.
The surgeon says the radiologists dont trust the pathology report. Camille had 6 weeks of induction chemo to which she had a 'spectacular response.'
We have had long conversations with everyone on our team. They have said there is no clear cut answer. As the surgeon said, "Our balls are in your court." Its a very difficult decision that most 24 year olds dont have to make.

thoughts/experiences with radiation in someone so young?

I agree, that's a tough decision for anyone much less a 24 yr old. I am still surprised that they won't/can't make their recommendation.

As I had noted before we used to see the majority here that were much older with a history of tobacco use and their cancer was pretty aggressive. It was standard practice to recommend attacking their cancer with everything possible, i.e., the whole kitchen sink.

Then we started to see people like me, younger (their words, not mine), non smokers, BOT or tonsil primary and most of us tested positive for HPV. They also told us that our cancer was not as aggressive as the tobacco group. They still recommended the whole kitchen sink approach.

Now we are seeing many just like Camille, non smokers, really young but their primaries are located in their tongue and they seem to be just as aggressive as the tobacco group. This group never tests positive for HPV and I personally don't see why they are hesitating to approach this the same way?

So that's the troubling part to me.