Radiation or no radiation

2

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  • wbcgaruss
    wbcgaruss Member Posts: 2,216 Member
    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.

    Bob So Glad

    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

  • ERomanO
    ERomanO Member Posts: 317 Member
    edited January 2021 #23
    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.

    Excellent news!

    I concur with Russ - you are quite the success story.  May you have a lifetime of NEDs!

  • PipLily
    PipLily Member Posts: 127 Member
    edited January 2021 #24
    Congratulations!

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

  • BOB438
    BOB438 Member Posts: 21 Member
    No Radiation/Chemo Update: 03/11/21

    Had an exam with my surgeon yesterday @ MSKCC in Manhattan.  Visual inspection of my mouth all good, Neck lymph node exam also good.  I asked my surgeon where do we go from here.  He said let's do another CT scan in June (my last one was 12/20, NED), see him again in September, then schecule another CT in 2022.  He said if my next two (2) scans are all clear then I am done with them!  Woot woot!  My last surgery was Auguat 2018.  Surgeon said if I go four (4) years with NED then I'm good to go.  So glad I decided not to do the radiation/chemo treatment option.  It worked out for me.  Please remember EVERY case is different.  Oh, also, prayers work!  

  • Greddy100
    Greddy100 Member Posts: 12 Member
    edited March 2021 #26
    Hi Bob Glad I found this thread

    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!   

  • BOB438
    BOB438 Member Posts: 21 Member
    edited June 2021 #27
    No Radiation/Chemo Pet Scan Update: 6/11/21

    Had a CT earlier this week, NED!  I have been cancer free since my last surgery August 2018.  Remember I opted not to do the radiation and chemo route when offered this option.  As I previously mentioned (3/11/21) my surgeon said if my recent CT was clear he'd scheduled one more in a year (not every 6 months).  Feeling positive vibes that I beat this!  As a cancer survivor there is always a thought and fear that the cancer will return.  I guess I have to live with that however getting good test results easies that fear.  Stay well everyone!

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    BOB,

    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

  • wbcgaruss
    wbcgaruss Member Posts: 2,216 Member
    edited June 2021 #29
    Congrats On Your

    Latest clear and clean and NED CT Scan. Certainly, something to celebrate and enjoy. Upcoming scans give us some anxiety but once we get the results of NED the weight is lifted off. There is always that concern we have as survivors in the back of our mind of a cancer return but I try not to really think about it much and can mostly not even consider it. I am certainly glad for you that you could skip the radiation and have a good outcome so you could avoid the probable side effects many of us have. So here you are NED and good to go enjoy life and I wish you an uncountable number of clear scans in the future-Wishing You The Best-Take Care-God Bless-Russ

  • BOB438
    BOB438 Member Posts: 21 Member
    edited June 2021 #30
    Greddy100 said:

    Hi Bob Glad I found this thread

    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!   

    CT Scan 2021

    See my lastest posing, another NED Cat Scan!  Stay well.

  • BOB438
    BOB438 Member Posts: 21 Member
    edited December 2021 #31

    Just had another CT this week, NED. I have been cancer free since my last surgery August 2018. My decision to opt out of radiation and chemo treatments seems to have been a good one. The side effects of those 2 treatments are horrible.

  • Aquarien
    Aquarien Member Posts: 3 *

    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.

  • Aquarien
    Aquarien Member Posts: 3 *

    I forgot to mention a very important point, I had Proton radiation, which is much more focused, not the radiation that spreads a wider, deeper beam.

  • Logan51
    Logan51 Member Posts: 464 Member
    edited December 2021 #34

    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.

  • wbcgaruss
    wbcgaruss Member Posts: 2,216 Member

    Well, Aquarien I think I commented on your 6mm spot in another posting but again what is the plan, and was it biopsied at all to rule in or out is it cancerous? Also, 6mm is pretty small and if it needs to be treated it could be done most likely with a cyberknife or the proton machine which you had used before. You could have gotten the chemo to help the radiation but still, later on, could have still ended up with a spot like this somewhere. So nothing is guaranteed when they treat you usually but they try their best and your doctor must have been satisfied with just the radiation or I think he would have strongly urged you to get the chemo. Also about those folks coming out of the chemo infusion area not looking good and carrying a bunch of pills. They and many more of us had to get both for our cancer treatment and the folks you are seeing have no choice it's either get the whole treatment or most likely they won't beat their cancer. You see sometimes you can't pick and choose. Well, you can but you may not get the desired outcome. Like Logan there I had the port, feeding tube morphine, etc. And like Logan, I was feeling pretty sick. So I went in for a checkup of my problems and they told me everything was normal for the treatment I was in. So don't avoid treatment because it makes you ill in the short term because in the long term your life is in the balance.

    Wishing You The Best-Take Care-God Bless-Russ

  • BOB438
    BOB438 Member Posts: 21 Member

    Followup. Saw my MSKCC surgeon this week for a normal in office exam. Visual inspection of my mouth went well, he was satisfied that all is well. Neck lymph node examination also went well. He scheduled me for another CT in August 2022. He said to continue to do my neck stretch exercises, and mouth rinsing daily.

    Just a reminder I had three (3) surgeries (mouth, left and right lymph node dissections), the last one August 2018. I opted OUT for radiation and chemo. Glad I made that decision.

    Stay well!

  • wbcgaruss
    wbcgaruss Member Posts: 2,216 Member

    Well, much congratulations on your recent follow-up and we are so glad all is well. Nothing describes the relief we feel after the doc looks at us and say everything looks good no problems I can see. I am glad the opt-out of other treatments worked for you and wishing you many more clear follow-ups and NED forever.

    Take care-God Bless-Russ

  • BOB438
    BOB438 Member Posts: 21 Member

    Update September 2022

    Had a CT Scan (last one was December 2021) and NED! All clear since my last of 3 surgeries in August 2018. For those following my post I elected NOT to receive radiation and chemo and it seems to have worked out for me. I see my surgeon in October for a followup office visit. I am suspecting I'll be having a CT scan on a once a year schedule.

  • wbcgaruss
    wbcgaruss Member Posts: 2,216 Member

    Thanks for the update Bob and so glad everything's going well for you.

    Take Care God Bless-Russ

  • BOB438
    BOB438 Member Posts: 21 Member

    Today it's 5 years since my last surgery (major lymph node dissection). Last CT Scan was June 2023, NED. I see my MSKCC surgeon in October. I'll post what plans he has for me going forward. Now I'm going out and celebrate!

  • wbcgaruss
    wbcgaruss Member Posts: 2,216 Member

    Such wonderful news, I could read news like this all day.

    Nothing better than NED except maybe when the docs look at your scan and comment "Unremarkable". But then again they are much the same thing.

    Ye-Hah Bob, I celebrate with you, enjoy.

    Take care, God Bless-Russ