Hi,
Just found this site. Ten days ago found out result of biopsy had SCC. A week ago, had surgery to remove 1.1 cm x 1.5 mm tumor from tongue/floor of mouth with skin graft from my thigh. No ND, as the CT scan of the neck prior to the surgery was clean. Clean borders, tumor removed, and T1NXMX stage diagnosed. I guess I'm lucky it isn't worse.
My ENT gave me 2 options: 1) ND pro-actively now or 2) monthly monitoring and quarterly neck CT scan and ND as soon as something shows up, for 2-3 years.
I need more information...

a) can the cancer spread only to the neck lymph nodes or to other places?
b) should I get a scan of the entire body, beyond just the neck CT scan, to make sure it didn't go somewhere else?

I'm waiting for a 2nd opinion appointment at a local cancer care center...

I'm 37 with zero risk factors. I'm still in disbelief/denial.

Sophie

Sophie,

Usually if this cancer spreads it does so thru the nodes in the neck as they are supposed to act as the bodies filter in that region so if the nodes are clean it's a pretty safe assumption that this cancer was limited to the oral cavity. If I were in your shoes I would opt for your doctor's number 2 and you can always get another opinion from a Comprehensive Cancer Center assuming you haven't already been treated by one.

Sophie,
It can also spread through the blood (tumors send out thousands of cancer cells into the blood stream every day but most, if not all, are taken out by the immune system) and also can end up in places where the blood goes through transitions such as the lungs or liver. It can also migrate throught the respiratory system, esophagus, etc. Some of the HPV induced cancers can also appear in the anus and no one knows the etiology behind that.

You are early stage with unknown mestastesis or nodal involvement. Did they perfrom a PET or PET/CT prior to treatment? That can rule out a lot of things plus verify the tumor as well.

You should be getting option 2 regardless of whether or not you get a ND ("watchful waiting").

Typically stage 1 tumors are treated by surgical resection only.

A ND done after the fact is also called "salvage surgery".

Sophie,

As you can see by my signature, I had the same staging as you, but I DID have the neck dissection. Although my neck CT scan was clear, it was my surgeon's protocol to recommend the neck dissection. There is no standard for the recommendation of neck dissections, however his particular feelings were that he could only tell for sure that the nodes were clear by removing them.

I hope this doesn't confuse the issue for you, but will give you some additional information to possibly help you make a decision.

Because the lungs can be a site for metastasis, I do get a chest x-ray once a year.

Jerry

Sophie,

I also had SCC flor of mouth and the surgery that you describe with the neck dissection. As you can see in my signature, my cancer recurred two years later. From this site I have learned that follow up PET/CT's are done. My original oncologist looked at me one day post radiation and said "you don't need me anymore." I never had another appointment or PET/CT. I feel this was a big mistake. It won't happen this time - I will insist on follow up testing.

I say get the second opinion, learn all that you can (this site has a wealth of info), and insist on followp testing - yes some of it is visual, but by the time my second tumor was visible it was over 3 cm.

Sophie,

I was just diagnosed w/ SCC on my tounge as well. I am going for my scans tomorrow to make sure that it hasn't spread! Welcome to the site! Everyone has been very helpful!!

I know that one person's experience can't take the place of good medical advice, but my tumor, while in a different place, was a T2N0M0--T2 because of the size and the length of time we figure it had been there. Because of that, even though my scans were clear for any metastasis, my dr. recommended a neck dissection for two purposes: 1. to remove any stray cells that might not have been picked up on the scans, and 2. to hopefully prevent any cells yet to spread from having a pathway.

So far so good.

I am very, very happy to have had the ND. He was a little apologetic when he recommended it, and I said that I was very happy to have that done. I did not have radiation, so this bit of insurance was fine with me!

Hi Sophie,
I too am newly diagnosed with SCC of right lateral tongue, 2 cm, just had my bilateral node dissection 8 days ago and seem to be recovering well. It certainly is a doable option in my opinion. I would encourage you to get more opinions also as in my research I have found there are no set protocols with this fairly rare cancer. I had 3 or 4 opinions and they were all at least slightly different. Then you can go with the one that fits best in your situation and that you are most comfortable with. Everybody has different fears and expectations so the answer might be different for different people.
Good Luck!
Lucinda

Thanks all.

In response to Gary, I did get a CT scan of the head/neck prior to the surgery and it showed no indication of the lymph nodes.

Does anyone have a recommendation for the best cancer treatment center in Virginia? I'm trying to get an appointment at VCU's Massey Cancer Center in Richmond, but there might be a better place?

Sophie

There a quite a few people from Va. in here.. One will get back to you soon I bet. Richmond,, Va Beach, Alexandria and a few more cities.

I'm in Richmond and my dad was treated at VCU Medical Center. I have a friend who lives in Richmond but goes to UVA in Charlottesville for cancer treatments. She does not have oral cancer. I guess it all depends on where you are located in VA.

Sophie,

"Pharmgirl" (hi Joy) and "Richmondgirl" (hi Cindy) helped me get stated at MCV. I will PM the info about the ENT we three have dealt with. Good luck, and welcome to OCF!

Catherine

Sophie, you are here with the most difficult decision to make. Others with higher stage or node involvement really had no choice (which is easier only because the decision is obvious). With your small tumor size and perhaps early treatment, you do have a decision to make.

A couple of thoughts for you:
First, remember every person (or cancer) is unique. There is no way for you or any doctor to know if you are already cured or not.

Second, this cancer commonly re-appears. The traditional term is recurrence but the truth is, it means that it was not cured the first time. In other words it was still there even after the first surgery. If it shows up again it is more difficult to stop a second time and at a cellular level more chances for it to have spread in the interim.

Third, you are young and have much left in life to contribute to the world. For this reason, you need the absolute best professional opinion/s to guide you in your next step. It is not easy and your choices kind of suck. Get yourself to the best advice you can afford.

Fourth, If you decide to wait and see, I would go to two different ENT's from different facilities every month. This may seem wacky but it is your life it is just their job. You can't afford to have less than perfect screening examinations. Your insurance may not approve of this so you might have to make arrangements to pay out of pocket for this. Once again, it is your life it is just their job (insurance or doctor). Do not miss a visit, do not stop at two years. In my opinion, you should continue monthly visits until you outlive the ENT.

Please understand I am not trying to make you more fearful. You are up against an enemy that CAN be beat! However, you must remain ever vigilant.

Take care

Hooray to this post Mark,, I was told the Dr had gotten all of my OC with the neck dissection and removing parts of my tongue. I knew I still had it and finally he listened after 3 1/2 months and did more biopsies. It was right there looking back at him. Sophie, listen to what Mark is telling you and if you have to, pressure the Drs. The delay just made me go thru more than I should have.

In my case, even after full blasting with conventional XRT radiation of my tongue, the cancer started again. There is no replacement for vigilance when it comes to OC.

Hi Sophie,

I was also diagnosed with T1 SCC on right side of my tongue. Mine was treated surgically. I have had 4 surgeries and they are not easy, but I didn't have to go through chemo or radiation. I totally understand how you are feeling and I'm sorry you are going through it.

I highly suggest getting "scanned" I went for PET scans and they found a lung nodule. I now see a surgical oncologist for my tongue and a pulminary doc for my lung. My doc is not worried about lung so I only see him every 6 months. Quite honestly the oral doc knew about the lung and did not tell me. His nurse told me by accident and I freaked out when I learned they knew about it a year prior. If you het PET scans, they have a lot of "false positives" which can be annoying. That is why my oral doc didn't say anything to me about the lung.