No offense, but I have to disagree with Karen and Gita on this one. Because of the changes from surgery and RAD, it is just too hard to have concrete evidence. I know everyone is different, but in Heather's case, it was an undetected tumor that was causing a lot of the problems she had during and after radiation. Karen, I'm sure you remember some of it - the infections, the fistulas, the intense pain. We kept complaining that something wasn't right and the doctors kept saying it was just from the RAD. Even replies I got here on the forum indicated that it could all be from the RAD.

Now I know radiation causes a lot of problems, but if just one doctor would have entertained the idea that there might be a recurrence, we might have found the second tumor while it was still small enough to be surgically removed and I might not now be grieving for a lost daughter.

I'm sure it would be excruciating to be told there might be a recurrence, then find out everything is okay only after worrying yourself to a frazzle thinking about it. But the alternative is definitely not one you want to deal with.

Carol,
Heather's tumor was resistant to the radiation. I often wonder if adding chemo would have made a difference. I strongly advise everyone to have chemo with the RAD. The experts that Heather's doctor consulted were concerned about the long term effects of the chemo, which is really idiotic when you think about it. Being stage 4, Heather's chances of even being alive long term weren't good to start with and by being overly cautious, the docs cut her chances even more.

I know! I know! Maybe even chemo wouldn't have helped, but I sure wish we never would have asked for the "expert's" opinions and just went with the gut feeling of the local oncologist, which was to add chemo to the RAD.

Sorry for ranting, but I feel strongly on this issue. Looking back, I would rather have agonized over 3 supposed recurrences that turned out to be nothing than to have had the recurrence missed because there was no concrete evidence of it.

Rainbows & hugs, wink
Rosie

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.