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#201398 06-18-2022 03:07 PM
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Jim S. Offline OP
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My name is Jim, 53 year old teacher from California. Last November I was diagnosed with SCC on the right side of my tongue after I developed a canker type sore that wouldn't go away. Had a partial glossectomy and 100 lymph nodes removed (cancer found in 6) back in December followed up by radiation and 4 rounds of chemo. I had to stop the chemo because I was in rough shape between doing the two treatments at the same time. Anyway, just had my follow up PET scan this week and received my results Friday but haven't received a call from my doctor yet (being a Friday probably was out on the golf course or something) anyway the first thing on the scan results says there's a malignant recurrence in the same area as the initial tumor. I was hoping to be on the road to recovery at this point but it seems like it will be back to surgery for me now. From what I read, once you do radiation they won't put you through it again, at least for a certain period of time. Anyone who's gone through a similar order of treatments and results I'd be interested in hearing from. Really wish I was posting here with happier results from my PET scan, telling everyone no cancer was found and I'm just here to help! Take care everyone!

Last edited by Jim S.; 06-18-2022 03:10 PM.

Diagnosed SCC, 11/21
Partial Glossectomy 12/21
Chemo/ Rad 2/22-3/22
Follow up PET scan 6/16 - malignant recurrence detected
Jim S. #201404 06-20-2022 08:13 AM
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I would like you think about a couple things, and maybe find some hope in them.

The first is that a PET scan right after treatment is likely to have false positives in it. First, the nature of PET technology is not capable of definitively finding cancer. PET scans find cells that are burning sugar faster than normal. Many things cause that, and cancer is only one. It is very common for the area where the cancer was, and where the most treatment occurred to light up. It’s in massive repair mode and will be for months. If it did not light up I would be surprised. Even an area of inflammation from a back injury from a strain will light up. When I get scanned my knees and hips are bright as hell as they are always inflamed and painful from a life of working and playing hard. Radiologists only get sued when they miss something, so they comment on everything they see. That is historically a problem, particularly with non specific tests like PET scans. A PET scan has no way of finding cancer specifically. It finds cells that are damaged and in repair. To someone reading a PET scan that didn’t know your full history and treatments, and how long ago that might be very well written up as potentially cancer, but it cannot be determined from that scan.

The next step is to see what it is for sure. BEFORE additional treatments are applied. A simple incisional biopsy will give them a black and white answer. It’s hard to believe that after both surgery and particularly radiation that this soon after treatment it is still there.

Before you buy into this, know for sure. This scan is notorious for misinterpretation if done too soon after treatments. Wishing you good luck with this and a second opinion based on more than this one scan. B

Last edited by Brian Hill; 06-24-2022 08:29 AM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Jim S. #201415 06-21-2022 01:07 PM
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Jim S,

I echo Brian's response, as I just received my first PET scan post radiation and chemo, and the words "possible recurrent or remaining malignancy" appeared on the report. (Some of the very few words I could understand on the scan report among all the medical-speak) I read the report on the Friday before Memorial Day, and my doctor wanted to see me right away. Of course, I had the torture of waiting out the 3 day weekend to get his take on the scan results. It was a weekend of planning my funeral services, wondering how this is possible after my throat was essentially destroyed with the radiation, and questioning everything up to this point.

Long story short, Brian was totally right with the limits of the test. The test shows activity, and my tongue still has ulcerations on both sides, so my Docs are thinking that's the activity that shows on the scan. So, take heart, and wait for all the info to come in. For instance, I am to go back for another physical inspection in 6 weeks, and then another scan another 6 weeks after that. -eric


-SqCCA Feb 2016, partial glossectomy
-SqCCA Jan 2020, partial glossectomy
-SqCCA Oct 2021, hemi-glossectomy, lymphectomy? (lymph nodes left neck removed)
Frosty4191 #201418 06-23-2022 06:25 PM
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Jim S. Offline OP
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Thanks guys! Appreciate the feedback! I should soon find out more as I see my head and neck surgeon in person tomorrow. My radiation doctor who I spoke to on the phone said while concerning, it could be caused by inflammation from the spot on the tongue hit by radiation. I do know that my tongue, as of a few weeks ago and about six weeks post radiation, really became swollen and painful. It wasn't like this post surgery or even immediately post radiation but it's now enlarged to the point where it's pushing against my lower back teeth. So hopefully I can start working on getting that resolved tomorrow too. Oh what a fun journey this whole ride is.


Diagnosed SCC, 11/21
Partial Glossectomy 12/21
Chemo/ Rad 2/22-3/22
Follow up PET scan 6/16 - malignant recurrence detected

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