do a PET scan ? or CT scan ? sounds like you had something , then spread to neck lymph node
just my 2 cents
better be safe than sorry

good luck

I would recommend the PET Scan. The CT Scan missed my SCC in my Tongue although it was clearly there. I can see it when I stick my tongue out. The radiologist indicated that my crowns blocked the visibility in the CT Scan. Please push for the PET Scan if you can it is at a cellular level and shows much better detail!

I already had a ct scan just last month and it was negative. I had to beg to get that..

I had to beg for the CT scan as it is. The ENT thinks I’m totally fine. No metal artifact was mentioned in my ct scan report. The ENT I saw is a head & neck cancer specialist and he spent almost 10 minutes going through my entire scan and saw nothing in both my mouth & neck. I don’t know. I’m guessing if it was cancer, both the tongue & neck bump would have had some dramatic growth but neither have. I’m not sure what to do anymore. Maybe see a different ENT & ask for a MRI? Not sure, sometimes I feel like I’m wasting a ton of money and maybe I am just being “crazy” like the doctors think..

I had a small bump near the rear of my tongue and didn't do anything about it for several months (staying out of Covid likely areas). If it grew I didn't notice it, but eventually it became very painful on contact and I got referred to an ENT late last year. His first strategy didn't take, so he did a partial glossectomy in Feb. He felt confident that it was benign, but sent it to the lab as a precaution. It was cancerous and the sample didn't have enough clear margin, so a second procedure was scheduled. In between a CT scan was taken - which was negative.

In addition to another partial glossectomy, my Doc removed ten lymph nodes from the corresponding side of my neck early this month. Three of them showed microscopic cancer. (What I have is invasive squamous carcinoma). The tongue sample was clear, though.

Monday I begin a six-week radiation program which will feature three six hour cisplatin treatments. We did a PET scan after the second procedure (also negative) but that didn't impress anyone on my team. The irony is that there is no evidence that I have cancer currently but a very high likelihood that I actually do. This is a pretty hard-core treatment program (to say the least) but squamous cell is fast and nasty if/when it comes back.

My point in telling you all this is that I think someone needs to look more deeply into your situation. Maybe I missed it, but were you offered a plausible explanation for your condition? I saw your note about the tongue, but not the neck - or the connection between the two.

In any case, I wish you the best of luck!

Dear SSL

I have to agree with DonVila. I suggest another doctor/second opinion. With oral cancer, I have been told that the scans are OK but can miss things in the head and neck. In fact, with respect to my lymph nodes, they just took them even though nothing showed in the scans. And, they did find cancer in one of my nodes. I understand it is hard to find cancer in the nodes without a dissection unless it has grown significantly.

The fact that you have something on your tongue and now something in a node on the same side in your neck is a telltale.

Let us know. Stay safe and keep the faith.

Nels

I had an ultrasound on my neck in October and a cat scan in January. Both were negative. I’ve seen 2 different ents for both issues and expressed my concern that both the tongue bump and neck bump are on the same side. The first ent in January was rather dismissive and said there was nothing there. The second ent, I just saw in March and was more thorough. He looked in my mouth again, looked at & felt my neck from several angles and reviewed my imaging reports. He thinks it is just fat. He did say that he sees the neck bump but feels nothing abnormal in that area. That made me feel a little better but I am still really concerned. I don’t think the neck lump has grown much...that is a little reassuring bc I’m guessing if it was cancerous it would have blown up by now..it’s been there since October. I don’t know what else to do at this point..

Both doctors say the 2 lumps are unrelated. And totally harmless. But not entirely sure what they are. I thinking of either was cancerous they would have grown much more or feel a lot harder. I don’t know...

The bump on my tongue has not grown since it appeared over a year ago. It does not hurt but does feel irritated if I start to poke at it..

2 ents have told me there is nothing to biopsy. Neither has actually seen the bump, only felt it. Not sure why they can’t see it if I can. Based off of feel/touch, they told me it’s not hard enough to be cancer and not worth a biopsy.