Margins unclear decision to make

dfs56
dfs56 Member Posts: 9
in Head and Neck Cancer #1

Hi I had surgery in May for tumor removal that turned out to be olfactory neuroblastoma.  MRI came back good - no spreading.

Radiation oncologist has concerns because pathologist could not confirm if the margins were clean or not.  So, do I have radiation

in case we have cancer cells left or do the wait and see and if it returns do surgery and radiation.  I learned from the appointment

that you can only have radiation once in the area of the tumor (there are exceptions if chemo doesn't work).  Not sure if I should

use my radiation now.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    life is hard

    dfs56,

    You are a good candidate for a 2nd opinion or at least going before a cancer board.  You need to get the best recommendation you can.  Little known fact to the uninitiated, the doctors leave the ultimate decisions on cancer treatment up to you.  They should help you arrive at the best choice, but put the burden on you.

    It goes without saying, you want to get rid of the cancer and radiation with chemo do a good job at that  task.  A wait-and-see approach may be appropriate with vigilant monitoring (once bitten).

    The “total amount of radiation” received is usually the determining factor on whether you can get more in the same location.  There have been a number H&N members to have multiple visits.  To worry about the 2nd before the 1st is a bit premature.  Radiation most likely will work the 1st time.

    Happy decision making.

    Matt

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Radiation

    My husband had radiation in basically the same spot twice.  We were told the first time that he couldn't have radiation again in the same spot.  Well he was diagnosed with a second primary in basically the same spot as the first.  We were at a Emory Winship Cancer the second time and were told he could have radiation again but that they would have to be very careful because there was a chance his cartoid artery on either side could rupture due to the radiation.  He had no problems except the second time his skin burned where they had to graft skin due to surgery.  But it wasn't too bad.

    Second opinions and even third opinions should be gotten.  We learned that the hard way.  Although we had excellent doctors when he was diagnosed, we didn't go for a second opinion and I believe if we had, instead of radiation and chemo first, they would have done surgery since the tumor was contained in his voicebox.  Radiation caused major damage the first time and I wonder if it wasn't the cause of his second primary at the cervical of his esophagus and spread to his lung, which eventually took his life.

    Wishing you the best

  • swopoe
    swopoe Member Posts: 492
    edited July 2016 #4
    We were in a situation with

    We were in a situation with my husband where we could have gone either way with rads after surgery or just wait it out and see (stage 1 tongue cancer with peri neural invasion). The final decision was left up to us. We had multiple opinions and decided to go with the rads. 6 months later my husband is NED. As Matt said above, worrying about a second case of rads is premature. As a doc told us, if you don't get rid of the cancer now, there won't be a tomorrow to even worry about. So that is why we did all we could now instead of taking our chances and just seeing what would happen. In your case, have another pathologist look at the margins. And get more opinions. It wont hurt. Best of luck.

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