Lilyfoo, in this case he will need a feeding tube. this surgery will a) leave him unable to swallow for a while
b) they will need to check that he swallows correctly and does not aspirate. it is not just a matter of pain and swallowing. there will be anatomical reasons to have the tube. They will not want food on the surgical incision site either.
All in all, this surgery doesnt sound too bad to me and is definitely very doable. I am so happy you all managed to persuade Charles to proceed with this.
Take care,
Tammy

I sure am not taking sides but as a patient and a caregiver, I would opt for the PEG as well, based on surgery and this being a recurrence. I had one and still lost about 80 lbs. I had extreme nausea even tube feeding and ended up with TPN (IV) feeding for 6 months. Likewise, I had 3 bags of fluid daily for 6 months and the portacath was my only hydration source that worked. I'm not sure I would have enjoyed a tube hanging from my nose or taped to my face.

The important thing is that with or without is doable so maybe a discussion with Charles might help him get more on the team for his care. You've done great getting him on board...take that as far as it will go.

Okay. Telling myself to take a deep breath . . . First of all I want to thank everyone for caring so much, it literally brings me tears.

I spoke with his surgeons nurse. They want Charles swallowing within the first seven days, while he is still in the hospital. Charles and I discussed this option and he wants to try to go the nose feeding tube route. He has a 'hang up' with PET and prides himself on making it through radiation without one. BUT he and I will need to discuss further before his pre-op appointment 9/10. During our pre-op apt with his surgeon this will be one of our main discussions and perhaps make a change, insert PET during surgery. My gut tells me he would do better inserted before. I just think better nutrition equals better recovery equals a happier Charles (and Sheryl too).

I think you mean a PEG tube. A PET is the scan done to help stage and determine the extent of the cancer.

Nutrition must be the main focus while undergoing rads. Every single day he will need to take in at the minimum 2500 calories and 48-64 oz of water. This should continue at least until he hits the one year post rads date, even better the 2 year mark. If your husband can take more in thats even better and can only help him get thru all of this easier. I cant stress enough how important intake is!

As far as the nasal tube goes, that can be done at any time. Its not necessary for it to be done in advance like the PEG tube. No matter which route he goes, every single day he will still need to swallow. The muscles can quickly forget how to function. Even if its only a couple tiny sips of water several times during the day, its enough to keep those muscles active and working properly.

Best wishes!

LilyFoo, you got Charles this far, I would just roll with it. If he needs more later, it can be done. It's great everything is a go!

Uptown, My thoughts exactly! Everything is a go, just roll with it. Yikes is this kind of scary though. But we'll be fine, we're in good hands.

[quote]we're in good hands.[/quote]Lilly, You hit the ultimate number one goal to get through all of this. Unwavering faith and trust in your doctors is the single most powerful thing that keeps your mind focused forward through the dark days and back to the sunshine of healthy and well living. Good luck don

Charles went in for surgery today. During surgery Doctor took tissue from base of tongue to Pathologist, weird cells found but no SCC, no cancer. So doctor takes out swollen lymph node from neck, same thing, weird cells found, no SCC, no cancer. So the doctor takes out shriveled saliva gland, still no cancer cells found. He just has a lot of inflammation at base of tongue, running down back of whatever is at top of voice box. Possibly papilloma virus. So, the sew him back together and he'll be in day hospital for a couple days. Doctor says radiation can cause cells to be weird. So, we thought he was having at least a supraglottic laryngectomy, tongue resection, and flap reconstruction today! We have been praying for him, lots of people have been praying for him. Any thoughts?

Hi, Sheryl.

I'm betting that this is not what anybody expected!

I really don't know what to think about all of this. Perhaps they got the cells before they changed over to malignancy. I wish they gave you a better description of the kind of cells that were found.

How does Charles feel about all of this? How is he feeling after his surgery?

I just read through this thread and am joining the conversation now. I haven't been on the boards for a while.

Here's to hoping for the best outcome and that Charles heals up quickly from the surgery.

You take care of yourself, as well!

Much care,
Kerri

[quote]SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014[/quote]From the sig. So he does not have SCC? If so that is wonderful news! That must be as much of a shock (relief) as when you learn they find it. Best news yet.