Hi. My husband had his first (5 months) post IMRT CAT scan. We haven't actually seen the report yet, but the feedback his primary care physician was able to get over the phone was something like: not positive, but follow up is recommended. The report is still on its way to his ENT/oncologist. I know we just need to do the follow up, and it could take a week or two. I also know that "inconclusive" spans anything from scar tissue to a recurrence. Any words of encouragement to get thru the next 2 weeks?

Hi, Never think the worse, always try to be positive. I know that is difficult, waiting is actually the worse time I know. I also learned that positive thoughts do help.
I keep you in my prayers

My first years worth of MRI's sucked so don't expect a clean MRI for a while. They will exhaustively check every detail. Scans are only a small part of the diagnostic follow up.

I often wondered why after his treatment had finished that all Robin had in the way of follow up was a cursuory physical exam by the head and neck clinic ,that consisited of physical examination of his neck scar,four weeks later.
This was then followed by another four week check up lasting a few minutes and ending with the words " so far so good"
The thought that all that time the tumour in his jaw and mouth was still growing at an alarming rate and had not been eradicated by the aggressive radiation treatment is horrifying.but how would they know without scans or x- rays?These were not even considered an option until after the tumour had burst through his face by which time it wasnt necessary as you could see the damn thing with the naked eye.
Too late.

Surely a false positive or a few days worry about inconclusive results is better than blissful ignorance and then the devestation of terminal recurrance that has been overlooked or just plain missed.

Liz,

I know that this is haunting you and I am so sorry. I live every day with the worry that we aren't doing enough or making the right treatment decisions. I can't imagine, when you have a negative outcome like Robins, what your demons are, but I say a little prayer that you can find peace at some level.

I do know that you can fight this with what you are doing...posting your experiences will help us all make better decision and be more militant in our quest for a cure. You can only do what you know to do. When you gain knowledge, you gain power!

Sending you a hug today, Deb

Thanks to all for your support. Greg personally retrieved the report and Fed-Exed it to his oncologist last Wed. Our (uneducated) reading of the report makes us think it is just scar tissue on his tongue. His neck, which is what we were most worried about, was completely clear. We should hear from the oncologist this week.