Base of tongue cancer

Mamagriz

They discovered I had cancer in Tonsil, base of tongue, lymph node, same side

Last Treatment was Chemo and radiation finished Jan 27 2025

CT in 6 weeks post treatment

MRI at 3 months post treatment

Everything looked the same

Then Last MRI a week ago showed a 5 mm increase at Base of tongue Now 1.6 cm Was 1.1 cm 3 months ago and felt it was post treatment scarring.

Scope today through nasal down shows nothing

No change on lymph nodes

Feel good eating well

I’m having a repeat MRI in 6 weeks and a PET scan within 3 weeks

If increase then surgical biopsy happening

Anyone out there experience the same?

wbcgaruss

Hi Mamagriz.
In dealing with H&N cancer this is the tough part many run into.
Not tough treatment wise because they have already killed your cancer and you are cancer free.
It is tough mentally not to wonder and worry a bit about it when something a little different shows up on a post treatment scan.
But don't worry.
Your cancer team has already given you a plan of treatment custom designed for your situation and it was created to wipe your cancer out with no question whatsoever.
So relax your cancer is gone.
If you are confident in your care team be assured of what they say that it is post treatment scarring.
Scarring from the radiated damaged tissue.
And like other damaged tissue such as a cut on your body somewhere after healing can leave a scar.
I have seen this type of thing many times over the years and things the doctors call false positives.
I have had cancers and been on the forums since 2012 and this is not the first time something like this has been seen.
I am sure your treatment was such that you are all clear.
Just do your best to stay busy, try not to let it worry you and above all trust your doctors when they tell you it is just scar tissue unless you have a reason to think otherwise.
Your care team works with cancer everyday so they know what they are looking at.
Also you are about halfway recovered since out of treatment since H&N recovery can take up to a year and sometimes more in some cases.
So bask in your cancer freeness and you will continue to be monitored with scans probably for up to 5 years and if by chance any cancer is seen in that 5 year period it will be small and easy to deal with.
But if you are like the majority of H&N patients you are on your way to complete recovery and free of cancer.
And you have already received your pronouncement of NED (No Evidence Of Disease) post scan. Some doctors say "UNREMARKABLE" instead for a clean scan.
Either way you're good.

Also, I recommend when you get a chance check out the "SuperThread" at the top of the page on the home page of the Head and Neck Forum here. It is a gathering of information, links, videos, etc. to help those dealing with H&N cancer.

So-Wishing you the very best…

Take Care, God Bless

Russ

Mamagriz

Thanks so much Russ. I’ll keep the faith, keep busy, and ride out this storm.
I’ll update you post scans and next appointments.

Thank you again, I really needed this message more than you know!

wbcgaruss

Thank you, Mamagriz. I am so glad I was a help to you.

One more thing I forgot to post is a video of post-treatment folks, and you will possibly see yourself somewhere in there, or it might apply later.

One thing many people note about cancer treatment is the many appointments we have with chemo and radiation, and when you get your last treatment and are done, you feel sort of lost. Suddenly, there is nothing to do, this big void, you don't see the radiation people, people you saw every day for 7 weeks, and it hits you and is hard to explain.

Another is guilt. Sometimes we feel guilty that we have survived, but a person we met while waiting for a treatment or appointment has lost the battle.

I think you will like the video, it is always a help and inspiration to me.

Lost in Transition -- After Cancer Treatment Ends

https://www.youtube.com/watch?v=u90dYwZT7oE

Wishing You The Best

Take Care, God Bless

Russ

Vagabond37

Mamagriz,

We’re on a parallel course. I finished January 3rd and also had surgery. My experience has been close to the same. In my case, my oncologist decided he wanted a scan of my lungs. WAIT WHAT? He assured me it was a precautionary scan and that he had no indication of anything- just crossing the ts and dotting the i’s. Scary still - but it turned out fine and was actually a relief. As Russ nentioned in his very helpful post - trust your team. I’m still scarring also, and at 6 months just starting to feel semi-normal.

We fight on!

lloyd