I am a "T1/T2" tongue cancer patient. I was just diagnosed with a well-differentiated squamous cell carcinoma tongue cancer (approx. 2cm x 2cm on the right side). I am waiting for the PET-CT scan results, expected at my drs office on June 18. If the PET-CT scan shows no sign of cancer cells in the lymph nodes, is the surgery sufficient, or would you recommend that I also have radiation treatment following the surgery?

Hi Bob,
welcome to the forum. Tongue cancers can be very agressive. I would recommend you do a search on recurrence and metastesis before you make your decision.

In my case I had radiation and chemo with no surgery and I am doing fine.

Hi Gary,

Welcome. I, too, was treated for tongue cancer (T3N2)- finished treatments 11/03. I had surgery followed by radiation (37 treatments) and 3 rounds of chemo (cisplatin). Everybody is different and would consult with your doctor once the PT/CAT scan results are in. Good luck on the start of this long journey. We're here if you need us. Keep us posted on how you're doing.

Nancy

Gary,
Thanks for your reply. I will keep the board posted on my issue. I find this board to be extremely helpful regarding my recent diagnosis.

Thanks again.
Bob

Bob49: Sorry you are joining us, but welcome. I didn't have tongue cancer, mine was in the right tonsil. But the treatment is about the same for any oral cancer. I was treated at a cancer center which recommended all three treatments. Of course, I was a later stage and they were being very aggressive, but the current recommended treatment, as it has been told to me by my Dr.'s, is radiation with cisplatin chemo then surgery. For tongue cancer it may be different and, of course, you are different. Trust to your Dr.'s, but ask some questions after you get aquainted with some of the topics on this board. They do make mistakes and it is our responsibilites as patients to try to avoid mistakes. Good luck. We'll be anxious for a report from you as to what is happening.

Kirk,

Thanks very much for your advice! I will keep the board posted. Anxiously waiting for the PET/ CT results.
Bob

Bob,

Welcome to OCF. You can find great resources and support here.

I was diagnosed with tongue SCC (Stage II) 15 years ago at age 39. It caught me totally by surprise since I was a lifelong nonsmoker and several doctors initially felt it was nothing to be concerned about. All tests showed that it had not spread to the lymph nodes. Unlike yours, mine was poorly differentiated.

While the results of my surgery were very good, the tumor board at the cancer center that was directing my treatment felt very strongly that I should proceed with radiation. I don't recall for sure how heavily the poor differentiation factored into that analysis, but they were quite emphatic about going after the cancer with everything available at the time. I had both external radiation and brachytherapy over the course of about 2 1/2 months. The cancer has not come back in 15 years.

Are you being treated at a comprehensive cancer center? If you've read some of the other threads on this site, you can see that many of us feel strongly that it's important to get the benefit of the depth and breadth of experience you can find at one of the major centers, particular when it comes to some of these kinds of judgment calls.

Cathy

Nancy,

Thanks very much for your input! This is very helpful to me. I will keep the board posted.

Bob

Cathy,

Thanks very much for your post! I certainly am in agreement with you that I need to be treated in a Cancer Center. So far, I have seen a local specialist and a specialist in Phila, Pa.
I will definetly schedule an appt at one of the Cancer Treatment Centers in N.Y.C or Pa.
It is wonderful to hear that you are doing well! This also gives me hope! Thanks for writing.

Bob

Hi Bob and welcome to the forum. This is a great community of folks...

My case was a lot like yours (though remember we all respond differently to treatment). I was T1-2 N0 M0, with a well-differentiated tumor. I had my tongue mass (2 cm) removed in October, and a PET scan taken about five weeks later showed no signs of cancer anywhere.

I debated the radiation thing since they said I was 50-50 on needing it. But finally on the advice of both of my docs (who said they WOULD do it in my case) took the plunge and did six weeks of IMRT treatments. They hit my mouth pretty hard as well as both sides of my neck. That was back in December and Jan.

Well, in May it was discovered I had a recurrence in one of my lymph nodes (on the same side as my tongue cancer -- the left side). Apparently for a reason I'm still not sure of, they chose not to radiate that part of my neck so somehow some cancer cells snuck away from the original tumor and made their home there. The rest of my mouth and neck (the parts they did radiate) are clean as far as I know.

Anyway, I say this so you know that tongue cancer can be a feisty foe and even with radiation it can come back. If I had it to do over again, I would go through radiation again but I would first have gone to a comprenhensive cancer center for a second opinion on how to do it. Maybe IMRT wasn't such a good idea? Who knows... I can only speculate now...

Good luck to you -- we all pray for you that you'll give your cancer the death blow the first time... Don't be afraid of getting second and third opinions. Be as aggressive as you can be now -- your best shot is knocking it out in round one...