On Nov. 20 I was told by my oral surgeon that the sore that he removed was cancer. We were all surprised because I don't fit the profile. However, everything snowballed after that. I met my surgeon on Monday, Nov. 24 and had surgery the next day and came home on Wednesday. When I returned to see my surgeon, he said that my lymph nodes were clear and the edges of the tongue tissues were clear. Therefore, I am not doing radiation at this time, yet the thought is always there, "Will it come back?"

My husband had surgery for tongue cancer in July, they took 1/3 of his tongue, trach, graft from upper leg and modified neck dissections from both sides. They said the nodes they took were clear and no radiation needed. Three months later he got a swollen gland which turned out to be a cancer tumor. He had a radical neck dissection Christmas eve and they couldn't get all the tumor. He began a very heavy regimen of chemo/rad about 6 weeks ago and has two weeks to go. I'm sure he was a different case and you didn't say how big the sore was. Dan just thought his was a canker sore and didn't get to the doctor for months and then more months before final diagnosis. He was stage 2/3. We are praying that God will completely heal Dan through this regimen of chemo/rad. He was in the hospital for a week with the tongue sugery. Had me gotton a clear diagnosis sooner it probably would have made a big difference. If anything comes up, just get checked right away. His oral sugeon said his swollen gland was most likely an infection and put him on a regimen of antibiotics which was a wasted 10 days. We should have demanded a PET scan immediately. We are now at U of MD which has a great tumor board and feel like we are in the best hands possible for what he has. There are lots of people who post on this board who had the surgery years ago with no recurrance. Dan is 48 and didn't fit the profile, not a smoker, etc. I hope and pray you are over the ordeal and can get on with a great life...just remember to get anything unfamiliar checked out right away!!

Take care!
Debbie

Please do a search on these message boards using the words occult mets or just the word occult. It is documented that at least 24% and maybe more of individuals with early stage cancers have mets to the nodes in the neck that cannot be detected by MRI or CT as they are very early in the process. You can gamble that you are one of the lucky 75% or you can have your doctors interface you with a radiology oncologist. Additional surgery to remove the nodes isn't the complete solution because the cancer can live in the fatty tissues surrounding them or even in the musculature or boney tissues of the area. I for one, a non doctor, have read and seen too many "recurrences' a misnomer at best since they are often these micro mets that were not picked up, in postings here, in patient visits to hospitals and discussed at symposiums I have been part of. I am not a proponent of surgical only solutions to oral cancers because of all this. Only in extremely early carcinomas "in situ" will you ever hear me say that surgery alone is a good thing. What ever you decide, you should at least have a consultation with a doctor oncologist who is not a surgeon but comes from another discipline like radiology. This cancer is very unforgiving the second time around, and you usually only get one chance to make a good decision. Ask lots of questions now, of as many doctors as possible. Be your own advocate, because no one else is fighting for you. You need to know as much as you might need, to make the best choice you can. Chance favors the prepared mind.

There are several posters here who had clear margins, no follow up rad/chemo and had cancer appear someplace else later. I had SCC of tongue, about 1/6 of tongue removed, along with neck dissection that removed sevral cancerous noddes, all with clean margins. Followed up with rad/chemo to the affected side only.

What happens, 4 months later they find mets to the opposite side lymph nodes, so back for a second neck dissection and second round of rad/chemo on the opposite side of the first.

Really suggest a second opinon on this radiaton not needed issue. Even my docs were in conflict the first time around, surgeon says margins are all clear, no need for follow up treatment, oncologist says do the rad and Chemo. Only mistake was they should have done both sides the first time.
Bob

Hi,

I see from your profile that you had a stage III tumor. If that is true, I can't imagine why your doctor wouldn't recommend radiation. Are you sure it is stage III? Surgery only usually isn't a viable option for stage III. Please get a second opinion from a radiation oncologist. If possible, you should go to a major cancer center for a complete evaluation. And please don't delay.

Rainbows & hugs,
Rosie

I'd like to chime in here. I do not post that often but I am on here a few times daily keeping up on everyone. Your post concerned me.
I agree with the others. Please seek a second opinion. I was told 3 times that I had clear margins and I still had a recurrence 7 yrs. later. I am now approaching 1 year since that announcement. I did have radiation treatments even though I was told by my radiology oncologist that he did not think I needed it.....(this was also the guy that did not believe me when I said I had a lump on the side of my neck that was causing me some pain). It was my Surgeon that said that if it was him, he would demand radiation therapy.
As Brian said, "early stage cancers have mets to the nodes in the neck that cannot be detected by MRI or CT as they are very early in the process". This was me...........I had both a MRI and a CT scan and surprise six months later I had to have a Radical neck dissection....(yes it was the lump I had told them about).
It is only you that can insure everything is being done for you......you must be your own advocate.
David

Definitely good words from everyone, especially Brian... I had a stage 2 tumor on my tongue removed in October (margins clear)... The CT scan taken before the surgery and the PET scan I had taken about 5-6 weeks after surgery showed no node involvement and no mets, and the PET even showed nothing abnormal around my tongue "tumor bed" despite the recent surgery.

My radiation oncologist told me that I didn't necessarily have to have radiation, but when I asked him and other doctors if they would have radiation in my shoes, all responded "absolutely." Like Brian has said, taking a very aggressive approach the first go-around seems the best method... Now I'm one-month post-rad and of course praying that I won't have to deal with this again...

One question/observation to throw out: I did NOT have a radical neck dissection along with my tongue surgery, but my nodes on both sides were treated with radiation, especially on the side that my tumor was on... It seems that everyone on this board has had the neck dissection... Am I alone in not having one? From one standpoint I'm glad I didn't, though I hope that decision doesn't come back to haunt me...

Eric

Hi Eric, not everyone here had neck dissection and I am one of those without one despite the enormous tumors on my left neck. I received radiation to both sides of my neck although only one side was invaded with cancer cells. After the treatment, I did ask my oncologist if neck surgery was necessary to give complete eradication of the evil. He said it wasn't necessary.I understand your concern because up to this moment, I still have this question in my mind: if I had neck dissection, would my chance of cancer recurrence be relatively smaller?

Karen stage 4 tonsil cancer diagnosed in 9/01.

I really appreciate the responses because too many times a patient assumes that the doctors will tell the patient everything that needs to be done. Everthing happened so quickly that I felt like I had to leave it all in the doctors' hands and God's control. However, I want to be here to raise my daughters. They are too young to lose me. Selfishly, I want to see them graduate and marry and start their own family.

I also find that I still tire easily. How long does it take for the body to recover from the stress?

bbrasel...Hang in there with the tiredness. I had surgery(May 02)for tongue cancer Stage IV, 2 lymph nodes involved, radical neck dissection and radiation (7 weeks ended Aug 02), I still tire quickly, very slow moving in the morning especially and I used to be at my job 6:00 a.m. every day!!!(Of course, I should mention that I will be 47 in June, SMILE) I am taking it one day at a time and am so very grateful to be alive and like you put it in the hands of God and my doctors. So happy to be a survivor!!! I too would LOVE to see my children (17 year old twins) graduate HS, college, marry, etc. This illness has made me realize the importance of EACH day! I am so glad I found this Web site, Thank You Brian and everyone else involved.