I was totally shocked to be diagnosed with anterior tongue cancer on 4/23/09, being an apparently very healthly 61 year old. I had ignored a "cold sore" for nearly two months, big mistake! Now I've had a neck dissection, L1-3, and no positive nodes, for which I am very grateful. Tumor was small, 1.6 mm deep, but margins were <5 mm and showed focal angiolymphatic invasion, and my tongue burns at lesion sight 6 weeks after surgery so I'm worried about residual cancer at primary site. My ENT/surgeon says to just watch it monthly, but I am considering going to U. of Iowa for 2nd opinion. Should my primary site still hurt? Did any of you have these pathology findings and was additional treatment recommended?
I would appreciate any information and I am inspired by the aht bravery of all of you who have much worse situations than I do. Thanks!

Welcome, Janet.

Getting a second opinion (or third -- some here have gotten as many as five!) is a good idea, especially if you have been seen only by a local ENT. He/she may be a good doctor, but also has patients with enlarged tonsils, sinus infections and the like and probably has not seen many cases of this type of cancer. The University of Iowa is a National Cancer Institute-designated comprehensive cancer center and offers a head and neck oncology program, where your case will be considered by physicians from a variety of specialties (surgery, chemotherapy, radiation, etc.). Each will have seen many cases of oral cancer, and each will bring his/her expertise into the determination of a treatment plan.

And you'll find the main OCF website and these message boards to be a valuable source of information from people who have been there/done that and are happy to offer their own expertise in getting through this.

Keep coming back, and keep asking questions.

Janet, get as many rs opinions as you need to be comfortable with the decisions. I had opinions from 3 Hospitals and one of them was a CCC before I had a neck dissection at Ohio State James Comprehensive Cancer Center. I was told than my margins were 1.5 there and the Dr had gottenn all of the Cancer and I was clean. U still hurt and the Dr at a Local CCC told me I needed Rads and chemo and this wa before I went to Ohio State. I had biopsies a couple of more times and then the 3rd time, the Dr at OSU told me the cancer was back and took more of my tongue. He then said I needed rads and chemo. Needless to say I wanted the Dr locally to take over for my treatment then at Wheeling Hospital in the CCC unit. Things had gone too far and I had to have my teeth removed before rads and chemo and to prepare me for rad seed implants in my tongue.THey took the teeth and then began the agressive month of rads and chemo and then 2 days after they treatments ended, I was adkitted to the hospital for implants. For this I was put in a coma state and taken to the OR where they went up thru my chin and put pods or whatever they re called, then to Xray to be sure they were in the right ae=rea, then back to OR where they put the rad seeds n and put me in isolation. Supposedly for 3 days , but then the=y couldn't wake me. On the 7th day I came to . I was on my way to a rest home the next day.. that's when they started to call me their miracle patient. All of this because I was told I didn't need rads or Chemo. Go for whatevr will make you comfortable, I say.

Janet, This is a serious problem and you need to get at least a 2nd opion and go to a CCC for treatment, they have all the tools available to them to help you in this WAR. My ENT did not treat me once he determined that I had cancer, he sent me to a CCC and the rest is history as one says, get to a CCC and let them help YOU decide on the next treatment if any. Good luck and GOD speed!! Semper-Fi Bob

Janet -- I just noticed that you are in Colorado. The University of Colorado Cancer Center (which is also a NCI-designated CCC) has a head and neck cancer program that may be closer to you. The website has a page with information about seeking a second opinion.

Janet,

Believe me there is no such thing as being healthy as far as this cancer is concerned. I was the one that got 5 opinions from cancer docs and I basically got 5 different Tx plans so you know I'm an advocate of multiple views. In fact I probably would not be posting if I had stopped with either number 1 or 2 and number 5, by a CCC, proved the least invasive and (so far) the most effective of the remaining 3.

This is your mouth and often times it means your life so the only toes you need to be worried about stepping on are yours on your way out to satisfy your need to understand what's going on.