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Ssl #200683 02-09-2021 03:02 PM
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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


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/2020
1 member likes this: DonVila
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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!

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


Sam
DSapien #200704 02-12-2021 05:24 PM
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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..


Sam
Ssl #200751 03-26-2021 06:47 AM
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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!


DW Wheeler
DonVila #200755 03-29-2021 02:53 PM
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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


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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