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Joined: Jan 2016
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Hello there,

I recently had my 2 year follow up PET/CT scan and it came with a few small concerns. I think they are small, I was kind of in shock and I'm not sure if I understand completely what's happening. So, I was originally diagnosed with SCC on the left side of tongue and it was present in 2 (or was it 3?) lymph nodes on the left side of my neck (they removed like all of them though). I had chemo and radiation. I've had follow up scans what seems like every 3 months since then. On my 1 year follow up, there was some "activity" in the nasopharynx, did a scope and nothing visible. Same thing with this PET - some activity, did a scope, nothing visible. The "SUV maximum" is 5.1. But apparently that's not a big deal?

This most recent scan also showed 2 lymph nodes on the right side (wrong side....) of my neck with SUV max 2.3.

Also, in the right infrahilar region, FDG avid lymph nodes with SUV maximum of 4.0. And a 7mm nodule on the right lower lobe with some FDG activity.

SO...should I be way more concerned than I am? What the heck does any of this mean? The appointment is just a blur now but doctor is doing an MRI to take a look at the nasopharynx and the neck lymph nodes and sending me to a thoracic surgeon to check out the lungs.

Has anyone had anything like this? Isn't it really weird that it's on the right/opposite side? Do these values mean it is cancer and it has returned? Probably not a great question to ask the general public and I should have asked the doctor but I couldn't get those words out I guess.

Thanks for your input and your support!

Amanda


Amanda
________________________________
SCC Stage IV, L-Lateral Tongue T1N2bM0
Age at diagnosis: 26, HPV-
Dx: Jan.14.2016
Surgery-Partial Glossectomy & MRND: Feb.10.2016
Port & PEG: March.16.2016
Rads: March.23.2016-May.9.2016
Cisplatin: March.23.2016 & April.13.2016
Joined: Jan 2006
Posts: 755
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Hi Amanda,

I’m not by any means an expert on PET scans, but did have a few. One PET did show activity in some lymph nodes post-treatment. My doctor sent me for a fine needle biopsy which extracts sample cells from the lymph nodes - no cancer. He then ordered another PET scan a few months later and all clear. Lymph nodes can show “activity” on a PET scan for other reasons - ex. recent infection.

Make a list of questions to ask your doctor(s). Bring someone with you to take notes. Some doctors will allow you to record your discussion which I did a number of times.

Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2020
Joined: Jan 2016
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So I had a follow up MRI for the nasopharynx and right side of my neck lymph nodes and they are confident that all is well.
However, I also saw a thoracic surgeon for the spot on my lung and the lymph node there. He went back to February's CT scan and the spot had been there at least since then. So surgery it is on the 27th. Won't really know exactly what it is until they cut it out and send it to pathology. I'm confident it's nothing major and they are being cautious due to my history.
Thank you for the support here! I can certainly go into more detail if it is helpful for someone!


Amanda
________________________________
SCC Stage IV, L-Lateral Tongue T1N2bM0
Age at diagnosis: 26, HPV-
Dx: Jan.14.2016
Surgery-Partial Glossectomy & MRND: Feb.10.2016
Port & PEG: March.16.2016
Rads: March.23.2016-May.9.2016
Cisplatin: March.23.2016 & April.13.2016
Joined: Dec 2017
Posts: 14
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Good to hear that everything seems ok with the mri Amanda! Hope your surgery went well and please keep us updated!

Dee

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:Update:

Surgery in June went well and the spot was actually a bit of fungus called histoplasmosis. Since I don't have an active infection and my immune system is fine, they didn't want to do any treatment. So.. yay?! Grateful for the result but it was a weird one. They asked if I had been in any caves because apparently that's where this stuff grows which I have not been in any. But I have traveled a lot so it could be from a number of places.
I've got a follow up PET this Friday. Hope everything is still clear. It will actually be exactly 2.5yrs on Friday since I finished treatment.
Thanks for the support everyone


Amanda
________________________________
SCC Stage IV, L-Lateral Tongue T1N2bM0
Age at diagnosis: 26, HPV-
Dx: Jan.14.2016
Surgery-Partial Glossectomy & MRND: Feb.10.2016
Port & PEG: March.16.2016
Rads: March.23.2016-May.9.2016
Cisplatin: March.23.2016 & April.13.2016
Joined: Mar 2019
Posts: 28
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Posts: 28
So happy to hear everything turned out well.


Wife and cheerleader. Right sided BOT dx 2/25, surgery 3/7 for tumor removal (clean margins) 2 lymph nodes 1 pos for ECE (ugh), pT2N1M0 HPV POSITIVE (one small blessing in this nightmare), Stage changed to Stage 1 due to diffuse and large HPV status. tx plan 33 radiation, 5 cisplatin chemo to begin 4/12.

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