AzTarHeel,
Thanks very much for your reply. The information I am receiving is very helpful to me regarding my decisions that I have to make.
I am very sorry to hear about the recurrence you recently experienced.

I appreciate the advice of being as aggressive as I can be at the very beginning, in order to conquer this. I need to hear this advice. This is most important!

I have not scheduled surgery as of yet, however, a local head and neck surgeon has recommended surgery. I decided not to rush into the surgery until I have been seen and diagnosed by a Cancer Treatment Center in NYC which I have an appt for mid next week. Still waiting for the PET results as well.
I hope everything works out well for you!
Thanks again for your reply and good luck to you!

Bob

Bob,
I hope that you are referring to Memorial Sloan Kettering Comprehensive Cancer Center (there are many cancer centers on the NCI list in New York) and not that other ...Treatment Center of ... outfit that has received regulatory sanctions and is listed on Quackwatch. See: http://www.quackwatch.org/00AboutQuackwatch/altseek.html

Head & neck surgeons will almost recommend surgery - get a second opinion from a radiation oncologist as well. At this point you really need a coordinated multidisciplinary team.

IMHO if it were me, and I had tongue cancer (any kind of oral cancer for that matter), I would waste no time in finding one of the 60 or so (comprensive) cancer centers in the US and getting my Dx and Tx there. I had an advanced tonsil cancer and I went to a CCC and I truly believe it saved my life. The National Comprehensive Cancer Network (NCCN) and National Cancer Institute (NCI) both have a list - below.

These are the top NCCN ones: http://www.nccn.org/members/network.asp
This is the NCI list by state:
http://www3.cancer.gov/cancercenters/centerslist.html

Ask your doctor where HE would go or an immediate family member if they had cancer.

Bob,

Belated welcome to you! It sounds like we share some similarities in that I had a base of tongue tumor slightly bigger than yours. I also had two lymph nodes light up on the PET/CT. The otolaryngologist I use told me that necessity of surgery has changed somewhat the last 5 years based on little or no difference in survival rates with or without surgery in my stage (Stage IV). He also told me that the amount of radiation he was throwing at me would be a lifetime max and surgery could be a last option. There has not been any sign of cancer since radiation for almost 9 months now.

Interestingly, I know someone going through the same everything except lymph nodes on the left side versus my right and his tumors did not disappear from radiation so they did the neck dissection afterwards.

I noticed on the NCCN website there is a Clinical Practice Guidelines document that shows for advanced head and neck cancer the first defense is the radiation/chemo route.

The best practice is to get at least two opinions and ask plenty of questions.

Good luck on your test results and getting all the info you need to make the best possible decision.

Ed

Hello Bob

Welcome. I can't help with tongue cancer but can assure you that the wonderful people here will be of great support to you during your treatment.

Good luck and love from Helen

Hi Bob,

I too hope you are going to MSKCC. There are also two good centers in Phila, Fox Chase and U of P. I do hope you are not planning on having the surgery in Princeton. I would want a doctor that has done so many of these things he 'can do these things in his sleep'. Also at a major center, the guy reading the tissue has more experience.

I work in Princeton and live in Trenton so know local dentists, doctors, etc. if you wnat any of that info. However, my cancers were totally different than yours.

Take care,
Eileen

Bob,

My Surgery was at Yale but everything else was/is at Sloan Kettering. My radiation and medical Oncologists are both Head and Neck guys so, if that is where you're going, let me know and fill you in on the place. I also have a very good Thoracic surgeon there if you feel like giving a bit more of yourself!

Glenn

Welcome Bob,
My hubby had tongue surgery and nodes that were taken (few) were clear. No rad. recommended and we were not then at a comp. cancer center. 4 months later he had a very aggressive tumor in his neck, and had rad. neck dissection, chemo and radiation. If I had known more then, we would have gotton to a cancer center immediately. Just get the best help you can find!

God bless,
Debbie

I very much appreciate everyone's reply to my post. Your advice has been very helpful to me.

Both my MRI & the PET CT scans came back negative, which I am very pleased about.

I am scheduled for surgery on(6/22)for my tongue.

I will keep you posted.

Thanks again!

Bob

Bob,

Great to hear that your scans came back negative - what a relief! Good luck with surgery on Tuesday and let us know how you're doing. You'll be in my thoughts.

Nancy

Bob,

Glad to hear about your good news! God speed on your surgery Tuesday. Typical treatment plan for tongue is surgery followed by radiation or chemo/raddiation. I too had tongue cancer. I'm here to help if you need someone.

Lynn