The first time in 2000, I thought I had a canker sore which was actually cancer on the left side of my tongue. I was totally in shock and so scared that they had to remove 1/3 of my tongue with chemo treatments, skin grafts and a trach. I survived with a lot of prayer and help from friends and family. My mother fed and took care of me. Then we found that she had a brain tumor and died two years later. Now I woke up with another sore - very suddenly, went for the biopsy one week and the next had to have another third of my tongue removed on the other side as well as my lymph node. After checking about forty locations in my neck they say I am clear (three weeks after surgery) and don't need chemo. I haven't been to an oncologist just the ENT surgeon. A friend who has had cancer before recommended that I contact an oncologist for recommendations; does anyone have some insight/information on this for me?

JJ, in your position I would be talking with a radition doctor, asking about follow up radiation. Keep us posted on your progress.

Minnie

JJ, I agree you need to see a radiation oncologist as well as a medical oncologist, preferably ones who are affiliated with a hospital that has a team of people who treat oral cancer.

Nelie

Several posters here have been treated at the head and neck cancer program at H. Lee Moffitt Cancer Center in Tampa (affiliated with the University of South Florida).

Moffitt is part of the National Comprehensive Cancer Network, an alliance of 20 leading cancer centers across the US. The most up-to-date treatment protocols are published yearly by the NCCN. (The oral cancer treatment guidelines are available here ).

Because oral cancer can affect so many vital functions, a team approach, as Nelie recommends, is the way to go. Centers like Moffitt use the expertise of a variety of specialists (ENT, radiation oncology, medical oncology, dentistry, nutrition, etc.) to develop a treatment plan for each case, and those doctors work together to coordinate treatment.

-- Leslie

JJ,

I'm glad evrything is looking positive for you.
I have to say I agree with all that has been posted by these wonderful people.
In my opinion, you need to see a MO and an RO. If they agree with the ENT great but at least you have got the information from those who are most educated on the up-to-date recommended treatments for your disease.
Ask the ENT to refer you to someone, I'm sure they will not have a problem with this.

You are in my thoughts and prayers.

Mike

Thank you so much for your insight. I will most certainly contant my ENT to recommend an oncologist. This is a wonderful website for knowledge and support!

JJ,

Listen to all those who have given you solid advice. My sister ended up having 4 surgeries (primary was left side of tongue), declined radiation and then when surgery was no longer an option, had to do chemo and radiation. She only lived 5 months after the radiation/chemo treatments were completed. It's an aggressive cancer, be aggressive fighting it. You sound as if you are on the right path....my thoughts are with you,

Nancy