I just became a member and have taken some time to read some of the posts and I am really thankful to have found such a supportive and informative environment. Here's my story: I am a wife and mother of four children. I am 35 years old and I have been happily married for 16 years. I have never smoked nor drank hard alcohol, but I do drink wine. I have not tested postive for any HPV virus (I have read that there can be a connection). After initial dismissals from two different doctors, I was eventually diagnosed in March of 2005 with Stage II SCC on the right side of my tongue. I had surgery to remove the tumor and I was told I had clear margins in the tissue of the tongue and that we had a very strong prognosis that I was good to move forward with just regular checkups. About five weeks later, I had a lymph node appear on the left(opposite side)neck. The ENT dismissed the node at first because he said it would normally stay on the same side if it were related to the original spot on the tongue. Several weeks later, after antibiotics and CT Scans and finally a needle biopsy, we got the news of the node being positive for SCC. We immediately decided to seek treatment at the Moffitt Cancer Research Center in Tampa, but because of the delays in diagnosis, it took a total of eight weeks to get a radical neck dissection on the right side of my neck performed. The PET Scan Moffitt performed before surgery did not show any other hot spots. Upon doing the surgery, the node appeared excapsulated and the doctor said that she actually had to physically remove the node from the muscle tissue in my neck. However, the pathology report from Moffitt, which was double checked, showed that the muscle had actually formed scar tissue that prevented the spread and helped encapsulate the node. The pathologist came back with clear margins and only one node out of 16 that tested postive. Even though the pathologists said we had clear margins, I went through 35 radiation treatments on my neck and did chemo simultaneously. We tried to be aggressive. In November, I pushed for a PET Scan. The radiation oncologist said there appeared to be some very very minor activity on the right, but dismissed it and said he didn't feel we needed to be concerned about it and that PET Scans were not always reliable in providing a clear picture. In February, I noticed a node on my right side (original side of the tongue) that was swollen and a little painful. After a couple of visits to Moffitt, they did a CT Scan and it looked suspicious. The doctor said that their tumor board recommended a neck dissection on the right side, which I am recovering from as we speak. (Just got out of the hospital yesterday.) I am now very concerned about whether they have found the source or if this could be residual from the tongue or previous node. I have had two PET scans and countless CT Scans and they haven't seen anything, but I am very concerned. I am thinking about going to MD Anderson or Hopkins for at least a second opinion, but I will still need to get treatment at Moffitt because I have four children at home and they are only 45 minutes from me.

My dear Julie, WELCOME
It sounds like you have been through the ringer as most of us have, I too have just recently had a neck disecction on the right side on Jan. 11 so am still recovering. I , like you am glad for this site it has been a godsend as far as answering many questions and alivating many fears. Thanks for being here with the rest of us, even though you have a bunch of children you will still find time for this site and you will be helping others as everyone does here, So thanks in advance and hang in there my dear.
Always lenny

Thanks Lenny. They have done both sides now and say they don't see any new sources, but I have lost more than a little faith in physicians. I still hold on to hoping that this new node which was caught very early (1cm) is just a residual and not a sign of something they are missing.

Welcome to the Oral cancer Foundation Julie. Glad you found us but sorry you had to. My experience with MDA was they won't treat you if you are receiving treatment elsewhere. One thing I've learned is that doctors are no different than us. Human beings that make mistakes.
As you have found out this is a very unforgiving diaease. I think it has been Mis-dx many times.

I hope they got it all this time and you have a speedy recovery.

All my Best, Danny Boy

Thanks Danny Boy,

I have read several of your posts and you really seem to have had your share of experience. I guess I am feeling like I don't want to think they are missing something at Moffitt. When the surgeon did the neck surgeries on each side, she said that she looked thoroughly and didn't see any sources. I had the problem initially in the right tongue and then it went to the left node and now a right node. Each time, I have been told that it is very very rare for a right tongue tumor to fail to the left and now for a new node to pop out with no new sources in the mouth makes me a little nervous. CT Scan seemed clear, so go figure...

Hi Julie! Glad your here, sorry you need to be. I sure hope you're done with treatment for good. Sounds like you've been through alot. Erik

Hi Julie,

You sure have been through a lot. I'm sad to think about how hard it must be for you.

My husband John was diagnosed last Sept with SCC in his left tonsil and also had lymph node involvement on the same side. When they designed the radiation treatment the radiation oncologist said that he would be receiving radiation to the right side of his neck as well because the cancer sometimes spreads from the same side as the tumour to the opposite side and they wanted to try and catch any cells that might have already moved to that side. That pattern of spreading may be more common for tonsil than for tongue- I don't know.

John didn't receive quite as much radiation on the opposite side because they wanted to try and preserve the function of some of the saliva glands.

all the best to you and hope your recovery is going well.
Mary