Hi everyone,

My 28 year old, non-smoking daughter has Stage 3/4 tongue cancer. She was diagnosed in August, had surgery Sept. 4th and is going to start radiation soon. MAYBE going to start soon. I have been reading on this forum for hours and we're not so sure now what the best course of action is.

The surgeon was very aggressive and is confident he got the entire tumor. The margins are all clean. The grade is well-differentiated, there is no necrosis, no vascular or perineural invasion noted, no evidence of tumor multicentricity and no in situ carcinoma. So far, it all sounds good.

Now, the bad part. He did a neck dissection and of the 15 lymph nodes removed, 4 were positive. The largest node is 1.2 cm. Her staging is T2, N1, MX. We will have results of a lung and liver scan soon, which will determine the new "M" status.

The recommended treatment is 6 1/2 weeks of the highest dose radiation possible. Since she is young and in otherwise good health, they feel she can tolerate the high dose. However, after consulting with specialists at John Hopkins and Sloan-Kettering, they are not recommending chemo. They say using it gives no extra advantage.

I'm wondering what your thoughts are. At first, we said yes to the most aggressive treatment available. Now, she is having second thoughts. She is not so sure she can live with the reduced quality of life that seems to be the norm after massive radiation. Of course, we understand she can't sit back and do nothing. But would it be plausible to have a lower dose of radiation to minimize some of the long-term effects and do the chemo to "make up the difference", so to speak?

The after effects of the radiation can be so severe. She's wondering if it is really worth it.
She's been pretty positive so far, but this really has her down.

I would appreciate input from anyone, but getting the opinions of Stage 3 or 4 survivors would be great. Has anyone ever refused the radiation or chemo and just gone with the surgery? Has anyone tried alternative therapies? I don't think she'll refuse the radiation altogether, but she's starting to lean in that direction and that scares the ___ out of me!

Thank you in advance,

Rosemary

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.