Radiation or no radiation

BOB438 said:

NO Radiation/Chemo Update: 12/5/20

Had another neck and chest CT scan earlier December.  All came back clear again, NED.  If you remember I opted out of the recommended radiation and chemo treatment in 2018.  Since my last surgery in August of 2018 PET and CT scans all clear.  I see my MSKCC Surgeon next month for a visual mouth inspection and lymph node checks.  Not sure but it seems I am now down to annual CT Scans.  Felling good!  God bless.

For you and the continued positive results from your scans. You certainly are one of the success stories on here and I am giving you a shout out and a Ye-Hah to celebrate. When you see your surgeon give him a hearty handshake and thanks for his excellent work. Sure looks like you are down to once a year scans-good news-Take Care-God Bless-Russ

Very happy for you! Wishing you continued wonderful NEDs!!!

Sep 2020 I had a TORS oncological tonsillectomy (left tonsil) P16+ T1 and a level 4 selective neck. 44 nodes clear. So I was recommended to go the single modality route of no radiation or chemo. I have been living in fear that I made a bad decision with a complex list of post op symtoms. I would add that the surgery only crowd appears to be growing but still very small! As result I fell that I have been in a vacuum trying to find cohorts to offer encouragement or just to compair notes. Just reading that there is someone out there that was P16+ OPSCC and free of further treatment 3 years later is very encouraging so thank you for sharing!   

GREAT NEWS - CONGRATULATIONS!

This is the kind of message that we always like to read!

I think all of us have the thought that "it may return" - but we also have the knowledge that life is precious, and we need to enjoy it ... with as little worry as possible.

I wish you a long and happy life!

MG

I was diagnosed May 2018 with soft palate cancer, surgery was not recommended because of difficult reconstruction, radiation and/or chemo was recommended, I chose radiation only because the Oncologist/friend said he thought I had a 98% chance of a full cure, so I didn't do the (uneccesary) chemo because that office was next door to the radiation clinic and I noticed everyone coming out of there looked really ill. They also had a lap full of pill bottles, most in wheel chairs. Everything was smooth untill (2 years later), now they see a 6mm spot in my lung to be followed up in 3 mos. I can't tell you what to do, but I thought why poison my whole body for a small lesion/mass on my palate, and I do not regret that decision. Also, the chemo Dr., said I was going to have a "rough time", whatever that meant, I wanted no further part of that office/Dr.

oh, that would be just plain sad if you got sick fighting something that has only one thing in mind- killing you.

look at the roll call and read the names of those who are no longer with us. I had concurrent C & R with an application regiment unlike anyone else I know of. and yeah I got too sick for Rads in week #5 and started #6 in the Hospital for 4 nights. so what? I wasn't a little Grade School kid @ 54. Very first visit with the Chemo Dr.: she said I'd get a Power Port installed, and a Feeding Tube, and they'd have me on Morph to deal with the pain. One look at my tongue at the start of week #2 started the liquid Morph, to go with Hydro, MM and Nystatin, and I was totally FT-dependent. Their focus, it seems, was to get rid of the C and not worry if poor little old me got sick 😢.

That was 13 years ago, and my only real regret is the Photon Rads that damaged my esophagus so that some 9 years out, all to the good, aspiration led me to become FT-dependent the rest of my life. Proton was not available to them, but even if it was I doubt they could have used because I was unknown Primary with 2 enlarged nodes on my neck and the surgical Biopsy came back NPC positive- which is why they zapped me in 20 places/session.

The game plan should focus on only one thing: getting rid of all the C. And remember- everyone's C is different. I was not HPV, for instance, which by everything I have read is easier to deal with.

Concerned about getting sick? Whatever.