Hi-
Well, I am not sure what to think other than this sucks. I met my new dr at UCSF. He was great. I just didn't like all the things that COULD happen. My new tumor on the left side is larger than the first time 7 years ago. He said I may need a flap or skin graft. That is still pending a discussion with the plastic surgeon. I don't know if radiaton is still an option. I don't think I reached the "max dose" on the left side but my new radiaologist oncologist will confirm with me next week. Dr said I "might" need a trach during surgery due to potential swelling. He also said that there is that risk in general forever like needing a Trach, swallowing, speech may be impacted....i almost passed out. But I think he was going over all surgery risks and I wasn't prepared to hear it. He said I also might be in the hospital for 7-10 days (again sucks as I have a 3 year old).

Anyway, the good news is...he never said I am going to die anytime soon. STILL! THIS! SUCKS!!!!

I appreciate any thoughts or previous experiences from you second and third timers. No chemo is recommended for me at this time.

I forgot to add that the PET scan showed potential lymph node involvement in only 2 nodes but all clear in lungs and other vitals. Node involment will be confirmed during surgery. MRI showed a mass on tongue...well duh!
sorry...I am kind of ranting. I'll get over it soon

HI there... I know you have been through this before and it does SUCK! I am so sorry. My opinion... It's on the other side right? they can do rads again. Even if they did it on that side the first time (I think this is highly unlikely they usually don't do it without reason) I personally was into my second day of rads when they had a very small node highlight on the opposite side. They rewrote my plan to include that side. Normally they don't include the other side, as I said, without reason, so you should be okay. Same with the tongue they don't normally radiate the whole tongue. As for the flap. I have one. It's okay I can speak well about 98% of my original ability. People who didn't know me before don't notice and those who did say it is almost imperceptible (I have a small lisp when I am tired). The trache shouldn't be permanent. I had one put in during surgery because my dr. insisted - related to swelling and such. Ask them under what circumstance it would become permanent? because that doesn't make much sense based on the surgery they likely have planned. And as for the nodes... I hope they are taking a bunch since one or two may be involved - even if they aren't it's a stop gap since there may be microscopic cancer in the nodes. So glad everything else is clear. Scary... but hopefully they will get it all - and let me say make - sure the plastic surgeon is a good one. ;o) push to get them to move quickly.
hugs

Thank you Cheryl. What you say makes sense and in line with what I think they will confirm here shortly. I think the trach thing was like a drive by...he just wanted me to be aware that there are risks with the surgery due to me already having had radiation. I think he alluded that if nerve damage occurred during surgery my throat could close (or something like that). But like any surgery there are risks and death and I think that is what he was covering vs what will really happen. At the end of the meeting after looking at my MRI, he said my worse case is that i could end up with a flap (vs. skin graft) and I could have a Trach for a few months if there are complications(vs. just the initial days of hospitalization).

How was your second pass at radiation? Was it the same the first (better or worse)?

Hi there... They actually combined mine. I had a pre rads scan. Two days into treatment I met with my RO - asked him how my head ct looked, he said it was just a baseline scan not to worry. Then the next day he called me in told me they had a very small node on my opposite side highlight on my scan and that since he knew I wanted it my ca treated aggressively - he was adding radiation to my other side as well so when I was 5 days into rads he added the other side and I had my whole neck done. - it's fine today. Push to get them moving.