Candace,
Thanks so much. He doesn't smoke, but he has dipped snuff for many years. He no longer does that, of course. He couldn't if he wanted to. I am so glad your brother is doing well. We are just rebounding from the death sentence the doctors handed him and I am so glad to see survivors who, even with stage IV, are recovering and doing well. While I am trying to stay realistic, it is nice to have a ray of hope.
Thanks again,

Tonya,

I sent you a couple of emails today. Also, surgery before or after radiation can go either way depending on many factors. My doctor did not do the surgery because he said if the treatment didn't kill all the cancer, he would not have to take as much area around the cancer for clear margins. He also said that should it return, there would be no other treatment options other than surgery. Lastly, he said studies show more recently that with advanced stages, there is no significant improvement in survival rates with or without the surgery. In other words, the surgery wouldn't significantly improve my chances of beating the cancer.

I wish you the best.

Ed

Thank you Ed,
Initially the doctors were planning to remove 1/2 of his tongue. Unfortunetly it had spread past the midpoint and they opted for radiation and chemo to reduce the size. Last week we were told the tumor had reduced in the wrong direction and the tumor had "legs" that had wrapped around something in his jaw. I'm sorry I can't remember all the medical terms. Anyway, they felt surgery was out of the question due to this. However, when I hear about people who have had jaws, lymph nodes, and even parts of lungs removed, I wonder if this could be our solution. Then again, it might be better to focus on quality of life at this point and let him and his family enjoy the time they have left together. Like I said earlier, we are letting them call the shots and then will support them in any way possible. It is just so hard not to reach in and try to help. I have always been the caretaker in the family and for the first time in my life I realize I do not have the answers, I do not know what's best and I can not fix this.
Tonya

Hi Tonya,
I understand allowing your brother and his family to make their own decisions, but it may be that you are less emotional then he and his wife and you have more knowledge at this time. If I were in your position, I would push hard to get my brother a second opinion from MD Anderson. His doctors sound heartless and unprofessional. Any doctor that objects to a second opinion is not a doctor I would want on my medical team.
Also, while I have heard that this cancer in someone as young as your brother can be more aggressive AT TIMES I have not heard that it is due to earlier exposure to smoking. I have always heard the opposite, that it is more an older persons disease as it takes years for the effects of smoking, drinking to build up. Maybe I'm wrong?? Anyone have the correct information?
Take care Tonya and do what your gut tells you to do.
Minnie

Minniea,
Thank you for your encouragement. His doctor was suppose to send the records yesterday. Hopefully we will hear back from MD Anderson soon.
Tonya

Hey Tonya,
I just re-read your post and you need to get your brother out of there and into a cancer center ASAP. It is a well known fact to many of us that we don't get a second chance to battle this cancer. PLEASE let your brother know that this may mean the difference between saving his life, literaly. Call MD Anderson yourself, make yourself heard, call repeatedly so they know the urgency of it. I would in NO way let the doctors he has now take care of lining up a second opinion. You are just now finding out there may be lymph node involvement?? What kind of doctors are you dealing with? You may need to step in and be your brothers advocate here, step on a few toes. Who cares as long as it gets him where he needs to be. I love my brother so much and can only imagine how you feel right now. Call the doctors yourself, get the ball rolling. Get plans together to get him to MD Anderson when they need him to be there. I wish you well and will pray for you and be thinking about you today.
Minnie

Hi Tonya
The thing here to remember is time is of an essence, if you have to tread on toes, do it girl, do it politely but persistantly, as you have read in the posts sitting quiet and saying nothing is not an option, so write down all the things you think your brother needs to ask and give it to your sister-in-law and tell her you WILL ask if that is what she wants and tell her that YOU will stand up in front of them and if needs be.. Please keep us up to date on how it all goes...
Prayers.. love and special hugs
Helen

Tonya, Welcome to the site. Sorry you need to be here. I agree wholeheartedly with the above advise to go to MD Anderson for a second opinion. I had tonsil cancer, which is a little different, but I had chemo and radiation first, then surgery and it has worked out well for me. I was stage IV also and had lymph nodes involved. Please have your brother get a second opinion. My team felt that even though the tumor was shrunk much smaller by the rad/chemo, surgery was a guarentee that no recurrance from the cancer I had in my lymph nodes could occur because the lymph nodes were removed. And surgery is not difficult compared to radiation. So please get a second opinion and don't let anyone convince you to give up. Your brother is very lucky to have you to help him with this problem. Will add you all to my prayers.

Oh, I am SO angry! I had called MD Anderson Monday and they told us what they needed faxed. The doctor's assistant was not pleased and, long story short, they want everything to come from my brother. SO, he asked them to fax the papers on Tuesday. Here it is Friday. I just called MD Anderson to see where we were at in the scheduling processes and they have not received the papers! Anyway, I called my brother, who is still hospitalized, and said - tell them to send them TODAY. I'm just sick, three precious days wasted. If my brother can't get something accomplished today I will have to get ugly and I've been trying to avoid that. I can't help but feel the reason they want to keep him is financial. Thankfully he has good insurance. I'm afraid they may see that as a bonus as well. Why else would doctors refuse - or postpone - something like this? I know I sound upset right now, but I will remain calm, but firm in my dealings with the powers that be, as you have suggested.
Thanks for a place to vent.
Tonya

Hello Tonya, I have had radiation twice, then I had the surgery. It does take longer to heal than if there was no radiation, but the surgery can be done. I just read your post, I am so sorry for all this invading your family and your hearts. I too was 32 when I was first diagnosed with tongue cancer. The first time they got it all, I was lucky, you could say. Then it came back with attitude..I wish your brother the very very best, God Bless You and Yours, I am praying,, Miss Vicki