I was diagnosed with squamous cell carcinoma of the tongue in April 2005. (stage 1) I had surgery with clear margins. I had a pet scan 8 weeks ago and a CAT scan 6 weeks ago and was told I was "cancer free". Two weeks ago a lymph node appeared, had it biopsied and it came back that it was cancer. I just found out yesterday so I don't know exactly what they are going to do. Does this mean I have an aggressive form of this cancer? For it to just reappear out of no where? I'm a 36 year old mother of two little ones with no risk factors. Any ideas?

Hi Kim,
welcome to the site. We can only guess what will happen next or what your prognosis will be. Tongue cancer is always a little more difficult to treat than other forms of oral cancer. My guess is that the node was there all along and somehow they missed it (in other words it is probably related to the original tumor). Did you have a PET scan prior to treatment?

I am assuming that they only performed a surgical resection of the tumor? They may want to perform surgery such as a neck disection (modified or radical) and/or radiation and chemotherapy.

You need to take as aggressive approach as possible and please - be sure to be seen at a comprehensive cancer center and not a local or regional hospital. Your young age and no risk factors actually work against you a little bit and you must be very careful to seek the best medical advice that you can.

In the references section on the main page, there are lists of the NCCN and NCI comprehensive cancer centers.

Thank you Gary for responding so quickly. I did have a PET scan before my tongue surgery. I was treated at a university. I'm going to the James Cancer Center at Ohio State next. I was told they were good. Is this the type of place I need to avoid? Where should I go? I want to be aggressive, I'm very scared. Thanks again for taking the time to respond.

Hi Kim,
I didn't mean to scare you. We see many here who accept a lower standard of care and your odds are improved by going to a facility that specializes in cancer. A medical team concept is vital also. Arthur James Comprehensive Cancer Center looks a like a good choice. According to their website, they have a strong head & neck program there.

Hi Kim,
I'm sorry you're dealing with this, it's particularly tough when young kids are involved. Not only do we have enormous fears for ourselves, but for our children.
It's good that you have radiation and surgery to fight with, it is very effective. The positive lymphnode can be hit with the toughest treatment possible. Keep us posted and stay positive. There is no reason to believe that you won't be JUST FINE.
Minnie

Hi Kim,

Sorry to hear what you are going through.

Just want to expand a little on what Gary said about the possibility that the node was probably there already. I too, was diagnosed with a Stage I SCC of the tongue, in March of this year. The biopsy was done in my office and when the results came in I immediately scheduled a consultation with the chief of head and neck surgery at my local comprehensive cancer center. While waiting for the appointment, my oral surgeon ordered a CT scan, which was done 6 days after the biopsy was done. The results came back, all nodes clear.

When I saw the surgeon he said that he would not have ordered the CT scan as in his opinion, there is a 15% error possibility in CT scans and that he always performs a modified neck dissection along with the tongue surgery. (PET scans were never discussed and I never even heard of them until I joined this forum.) I had to agree with him and we did the neck disection, too.

Lucky for me, the 30 nodes removed came back clear.

Now I am telling you this, not because I have any way of knowing whether your nodes were really clear at the time of surgery, but to back up what Gary said, that possibly exists that the node was already there, but missed. If this is the case, then as strange as it may seem, this should make you feel a little better about the situation.

I was told that I did not need chemo or radiation and I accepted that advice. If I had been told I needed either or both, I would have done them. You are goig to a CCC and that is the best place to be. They will suggest what you need done and you will do whatever it takes to lick this thing.

I wish you good luck and be assured that there are many people here that will give you the encouragement that you need to help you get through this.

Jerry

Hello Kim, what you have experienced is why we often caution "stage one" patients to seek multiple opinions. All of the diagnostic scans have a limit as to their sensitivity. At best perhaps detecting a tumor 2 millimeters in size or larger. Individiual cancer cells sometimes are already doing their dirty work by breaking free and moving through the lymphatic system. These "micro-mets" can only be found by microscopic viewing of the lymph nodes. This is one of the reasons for the surgical removal of the lymph nodes (called a radical neck dissection RND)

The good news for you, is that you have still got radiation as an option, as well as the RND if necessary. Radiation can be quite effective in treating a case like yours.

You might want to visit your local Social Security Office, you should qualify for SSDI which would help for the financial effects of cancer treatment.

Take care

Hi Kim

I had a similar problem as you happen, but I started with stage III cancer, tongue and several lymph nodes. They did the partial glossectomy, neck dissection and chemo/rad, all on one side. Sure enough, a couple months after finishing that treatment a node on the other side shows up, tested positive. Another neck dissection and another round of chemo/rad, on other side.

Upshot is, you can still get the neck dissection, but this time see if they'll do the rad to BOTH sides as it helps catch any stray cells.

I did my 2 year plus scan in July, all clear so here's hoping for the best.

Bob

hi kim , hang on in there you have come to the right site here, everyone is so helpfull and informative i have had ex... feed back god bless you prayers and huggies your way for you and your kids
maz

Thank you to all of you who replied. I am 11 days post surgery. They got me in right away and did a radical neck disection-all nodes on right side, jugular, neck muscle. They also did my tongue again. I get results on the 19th. I will of course do whatever they say. Thanks for the info and encouraging words. I hope that I can someday be helpful to others as you all have been to me. Love to all of you! Kim