Tongue Cancer: What are my treatment options?

Had tongue surgery for squamous cell carcinoma 10/24/22. Tumor was 3 mm and was considered to be stage 1. PET scan was clean no node involvement my cancer was listed at stage one. Biopsy report from primary tumor showed no evidence of blood or lymph invasion but there was perineural. Recommendation was to remove high grade dysplasia left on tongue then have radiation just went in for first radiation appointment and they felt a swollen node. Not sure if this could be left over from recovery of second surgery. The node shrinks in size after a hot bath and also is painful which are 2 things a cancerous node does not typically do correct ? Waiting to find out what this is and what to do about it any feedback is appreciated. They didn’t do a biopsy on the nodes because they felt I had a low immediate risk factor and that the radiation would take of any left over cells any ideas?

My gut is telling me that this may be cancer in the nodes and to go with the guy at Sloan Kettering because knowing the path of the lymph channel and the techniques of identifying which nodes should come out are probably better at Sloan Kettering that is what my gut is telling me.

If your gut is speaking that loudly to you, listen. You’ll feel much better with your choice to follow through because you’d always feel a level of doubt otherwise.

This past year I had a spot on my leg that troublesome. I had my pcp look at it. He assured me it could not be cancerous and was pretty adamant. My gut told me otherwise and I made an appt with a dermatologist. It was a basal cell carcinoma and rather deep already. This was a month after being told it could not be cancerous because of how it looked.

If you have an unsettled feeling it’s in your best interest to follow through. You’ll feel more at peace that way. And what do you have to lose? If you find out the node is not cancerous that’s a win and then you proceed with the next phase of treatment so that you can recover and get on with the rest of you life! 😊
That’s my ‘sounding board’ opinion. What do you think?

Hello @newtonguecancer. I noticed you had been posting to this discussion previously so you will see that I have moved your other post here as well. You can find all your posts in the following discussion:
- What remedies help with post Covid cough?: https://connect.mayoclinic.org/discussion/cancer-under-my-tongue-and-raised-lymph-nodes/

I am very confused is what I think. There should be a very low likelihood that it’s cancer but also not sure what else it could be. Swollen nodes on same side as surgery. It is my understanding the only way to know is to take them out. Talked with ENT a surgeon yesterday who feels that it is very unusual for nodes that are cancerous to be painful and so thus puzzles him. So now the drs are trying to figure out if the nodes are most likely cancerous before we do surgery and I am back at the point when I had cancer on my tongue I just want it out. My options are to go with Sloan Kettering and wait maybe a week or a local hospital that could get me in sooner. Because it’s the nodes and a more complex procedure would lean toward Sloan Kettering since the surgeon does more neck dissections. The waiting part is tough. Anyones thoughts or ideas are appreciated. I am having a hard time sleeping these days.

I see you 6 years out. What are the after effects of the treatment you received?

I have many post affects; extreme dry mouth, thick phlegm when I wake up in the morning, tight jaw and neck, the left side of my tongue is paralyzed, my epiglottis is barely functioning which makes eating difficult and sometimes dangerous, I get fatigued easily, I have brain fog and my conversation sometimes heads for left field, I have 24/7 migraine but receiving (4 rounds) Botox which has helped greatly, chronic ear pain from nerve damage, hearing loss, I’m cold most of the time and weak, my joints hurt and I’m just not what I was prior.
But on the bright side I’m still alive and my family is great full.

Hi I have 3 abnormal lymph nodes and one a submandibular one under my jaw is very painful has anyone ever heard of this and what helps the pain go away. My surgical options are to have it at John’s Hopkins on Friday. Or wait to next week and have it at either Sloan Kettering or Rochester. I also have heard it is better to have the radiation given at a cancer center as they have better outcomes.

@newtonguecancer, how are you doing? What did you decide?

Hi I had the surgery Friday to remove all lymph nodes levels 1 through 4 at John’s Hopkins and he said he got it all. So next is radiation I am deciding where to go for that now. Pain was really bad for the first few days. Still taking oxycodone that seems to help with the pain. There was no visible sign of ene so that is a really good thing.