my uncle was diagnosed recently with cancer of the tongue and was told that he would lose his entire tongue, pallet and tonsils. he doesn't want to have the surgery because of the severe debilitating effects. of course the only alternative to having this extensive surgery is to go through massive treatments of chemo and radiation. is there anyone here who can provide somewhat of a ray of sunshine on this.

We are not medical experts for the most part just that we have been through much of this. The best suggestion I have, is that your uncle quickly get to a large medical center that deals with this type of cancer frequently. There are people here whom recieved radiation only without surgery and are doing quite well. Of course I have no way to determine if that is an option for him or not. I hate to say it but he will more than likely have to go through the radiation even if he has the surgery.

What ever happens you can come here and talk anytime.

Take care

Lamomma....

I did not have surgery because my ENT doctor said he would have to remove too much tissue. I did have extensive radiation and chemo. My doctor said I had the upper limits of treatment. I am now over a year from my last radiation and 10 months since my last chemo. The most recent CT scan shows no tumor remaining and I feel pretty good considering it all. A lot of people on this board who had less treatment have more issues than I do. Just remember everyone is different, so my experience was mine and is not necessarily what someone else having the same treatment might feel.
Find a good doctor and let him/her tell you what he recommends and if you aren't sure, get a second opinion. Then weigh your decision with what you have heard.

My experience is quite similar to Khaja although I have a different type of cancer. My ENT surgeon advocated surgery to fight against cancer but the team of doctors overseeing my case opted for concurrent radiation and chemotherapy in view of the large size turmors in my tonsil and left neck. Operation would mean involving an extensive area of tissues in both my throat and neck, which would very likely damage my voice and my facial appearance. They planned to shrink the tumors fist and surgery afterwards. I was so lucky that when the treatment was over, all follow up scans did not detect active cancer cells and surgery was therefore unnecessary. I am over 2 years post diagnosis, no one can tell I am a cancer patient from my look. I fully agree with Khaja that everyone is different but getting a second opinion on your uncle's case can be helpful.

Karen stage 4 tonsil cancer diagnosed in 9/01.

I have to chime in with Karen and Khaja. I had radiation and chemo only for reasons mentioned previously. I was a good candidate for this because my tumor was well differentiated and focally invasive. In other words, in spite of late staging, it had not spread to the lymph nodes and was well contained in one specific area. It was a textbook case for IMRT.

I also went to a major comprehensive cancer center for radiation treatment. I sought out one of the top doctors in the world to treat me (she's even listed in the "Americas Top Doctors" book by Castle Connelly). I mention this because I feel strongly about getting the best medical care you can (and you very well may be -maybe I'm speaking more to others reading this thread). For something as seious as a total tongue removal I would at least seek out a competent radiation oncologist for a second opinion.

Did they offer radiation and chemo as an alternative and what was the difference (if any) in the potential outcome. I chose radiation and chemo because there was no difference according to my medical team. It's really all about risk/benefit.

A second opinion from a major cancer center is extremely important. You will see me say this again and again: You owe it to yourself to get the absolute best care you can find. Had I gone with my ENT's intial treatment plan, I would have had surgery that the guys at the major center said I didn't need. Get a second opinion.

-Brett

I was scheduled for surgery today for removal of 1/5 of my tongue as there has been a growth there for over a year, when it was biopsied and was benign. Last week decided to get 2nd opinion from surgeon who did my neck disection. He said no surgery, first biopsy and then MRI. Got results today and it's an infection from having thrush which the knife happy young DR. missed a year ago.I'd strongly suggest a second opinion.
Best wishes to all,

Thanks for all of the replies. My uncle decided against having the surgery. He is going with the chemo and radiation. In fact, they started the treatments yesterday. He is being treated in a hospital in New York called Beth Israel. I have to believe that miracles do happen, but I still worry. Thanks for the support.

Lamomma

Gary, yes the doctor did offer chemo and radiation but they wanted to do the surgery on him. The said that the cancer had not spreaded beyond the oral cavity and they wanted to remove it. One of the doctors said that was the best chance of a cure but they didn't go against doing the chemo radiation thingy. They said that the treatments have worked for some people in the past.

Lamomma

You never mentioned what staging it was. He is taking a bit more of a risk. Many feel that doing all three (surgery, radiation and chemo), has the highest chance of survival. Tongue cancers can be pretty aggressive. They can perform "salvage surgery" later if need be. There are others here who have had radiation and chemo only for tongue cancer and hopefully will add to the conversation. As far as "massive" goes, typically they give the full amount of radiation possible with most head & neck cancers (72Gy). Is he getting IMRT or XRT?