Thank for all the great advise. We are in Calgary. I'm going to start making calls starting Tuesday Monday is a holiday here.

I'm really concerned because we feel the lump is getting bigger. Everyday he says it feels bigger and I'm worried it could be aggressive. We have a friend who does MRI and can squeeze us in anytime just need the req.

Any advise is helpful.

[quote=ChristineB]
During rads a patient should be taking in a minimum of 2500 or even 3000 calories every day. Water intake minimums are 48oz, but some will say much higher is necessary like 80 oz daily. This is one of the most important things that can be done. Its controllable in a whirlwind of things that are out of control. Its not easy to take this much in but it will help the patient get thru everything so much easier. [/quote]

I learned the hard way the incredible importance of this; first time (14yrs ago) I had chemo/rad and refused the feeding tube, lost 25% of my total weight and that made everything much more difficult - second time (surgery+rad) I had the feeding tube put in, maintained my weight which vastly improved my ability to maintain my attitude/strength. It's critical.

We went an saw the ENT last week. HE gave us the diagonisis and told us our staging. Not 100% stage 3 but for sure Stage 2. The cancer has spread to the corner of his mouth on the inside so we have been told that they will have to remove the corner of his mouth and he will look different. Which has hubby a little concerned.
We have an appt on March 12 with the Cancer center for a second opinion ... we didnt request this ... it was offered. We will also see the Rad oncologist at that time and other support people.

Hoping some of you have been through this kind of surgery and can offer some advise on what we need to know going in.
He will be in the hospital for 10 days after surgery. Feeding tube in the nose and a trek in the throat. They are doing a neck disection to get the nodes and then they will biopsy them.

He does not want the feeding tube when we come home. He is adement about that.

Any advise would help

It really sounds like you are taking some positive steps towards getting things done. It is so important to find out everything you and your husband can do in order to be prepared to be in control of whatever you have to take care of. If your husband is not a computer type or just doesn't like to come on this forum, what you can do is print out the important suggestions you see here that you feel apply to yours and your husband's situation. In the beginning of my son's treatment, (he was a Stage 2 SCC) he was only on here for a short time and said it made him sad to read about some of the things others are facing. He was already in therapy for depression, so I did understand and didn't want to push him to come here. When he resisted things I told him from what I learned here, I just printed out everything I knew he could benefit from and just leave it someplace when he woke up and he did read it! And it did make a difference. Anyone facing such a catastrophic illness, is facing so many things that seem out of his/her control. Oral cancer takes away so many things - they way you eat, the way you look, speak, etc. - So if you can help him to feel in control, it goes a long way to beating this disease. My son resented having his mother (me) telling him what to do, so I would leave even the smallest decisions up to him by always giving him choices for example "you want one scrambled egg, or two", etc.

Now, about the feeding tube, the final decision has to be his. My son didn't want it either but we didn't know all the pros and cons at the time (you can look them up on this forum for yourself and see what you/your husband think). Paul did have a really rough time with the effects of Rad Tx and my heart just broke each time I saw him try to eat with all the blisters and sores in his mouth, - he had grown so thin with all the weight he lost. There is a lot of info on this site on tube feeding, so see what questions you and your husband can come up with for the doctors or for anyone here. Do come here often and let us know how you both are doing. You can get through this! You have lots of support from everyone here!

Hi there, I just want to say that it certainly sounds as though you're doing everything you need to be doing, and I hope it all goes smoothly for you and your husband. I think it's great that you're getting a 2nd opinion, if for no other reason than to have confidence in your treatment plan.

Your husband's opposition to a tube may motivate him to push himself to eat, so it could be a good thing. Since he'll have an NG tube post-surgery, there's no need to make decision right now about a long-term tube.

Good luck!

Hello there, I think the surgeons prefer testing the lymph nodes once they are removed to prevent any chances of any spreading and to be certain not to miss anything as they would be testing all the tissue.

As far as the trachea, it was dificult for my husband to cough up the phlegm caught in his lungs from the surgery but he worked very hard at it. This was one of the main reasons I stayed at his side day and night helping out with the suctioning through his trachea.

You probably already know that you need to conserve your energy whenever possible and get lots of long nights of sleep for when its impossible. This definitly has been the longest and most exhausting year of my life but I also have gained a lot of faith and inner strength.

I hope you are holding out well, Sophie