BOT

jtl
jtl Member Posts: 456
in Head and Neck Cancer #1
A person I know was diagnosed about 1 1/2 years ago with BOT cancer he did not have any surgery but did do the traditional rads and cisplatin. He elected to have a PEG and a Tracheotmy due to some issues with aspiration early on. When I first saw him a year ago he was several months post treatment. I recently saw him and expected that he would be more "normal". He still has the trach and the PEG and cannot hardly swallow anything except for small amounts of water. He told me that he had his throat stretched a couple of times but ended up in the hospital with an infection. I expect to talk to him soon and was wondering what others have experienced with BOT. I was surprised he ended up with so much scar tissue from radiation.
John

Comments

  • Hal61
    Hal61 Member Posts: 655
    #2
    One and one half years out
    Hi John, I'm one and one-half years from treatment. The last part was a partial neck dissection. I'm nearly two years from chemo and rads. I could swallow without a problem through treatment. I had the peg because swallowing food or shakes or grits, or anything was unpleasant, so the peg worked well for me. I never had a trach, have never had my throat stretched, and can open my mouth wide enough to fit my foot in it sometimes, just like I used to. I was BOT with spread to nodes on one side.

    I'm not sure what factors account for the wide variance in this particular aspect of recovery, but I know it swings quite a bit. I'm not aware of replications of treatment that might account for it. I had 35 sessions, all around my neck and lower jaw, I'm sure. My radiologist chose to spend a little extra time each session on my BOT location and left side (mets side) nodes.

    She told me other docs spread the radiation evenly for the majority of sessions, and then concentrate on the problem areas esclusively for final treatments. Maybe there is something in that which might shine a light on recovery problems. Its too easy to say, "it varies from person to person". It would be nice if there was a reason, or some reasons for evaluating long-term effects.

    best, Hal
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    I'm more like Hal
    I had BOT cancer, with one positive node. My treatment was a radical neck dissection and 35 sessions in front of the linac. I didn't need a PEG, nor a trache, and had no real problems except for temporary loss of taste and saliva. I consider myself to be very lucky.

    I'm going through my second round of radiation now, 13 years later. With 20 sessions down and 14 to go, I still consider myself among the lucky. No trache, no PEG, my skin is starting to burn this time (different than before) and I am not able to eat solid foods (different than before). But your friend certainly was at the far end of the spectrum.

    Pat
  • jtl
    jtl Member Posts: 456
    #4
    longtermsurvivor said:

    I'm more like Hal
    I had BOT cancer, with one positive node. My treatment was a radical neck dissection and 35 sessions in front of the linac. I didn't need a PEG, nor a trache, and had no real problems except for temporary loss of taste and saliva. I consider myself to be very lucky.

    I'm going through my second round of radiation now, 13 years later. With 20 sessions down and 14 to go, I still consider myself among the lucky. No trache, no PEG, my skin is starting to burn this time (different than before) and I am not able to eat solid foods (different than before). But your friend certainly was at the far end of the spectrum.

    Pat

    Pat
    Not sure what his problem is but I know if it were me I would ditch the trach since apparently it is his idea to keep it in case he has an aspiration issue again. He told me he is afraid to have it removed. That being said maybe he is also not forcing himself to swallow either. People are all different as we are well aware. I remember when one of my docs said you will need a PEG and may as well get it now. All that did was make me work harder to avoid getting one.

    Good luck with the treatments. I didn't have a lot of success with solid food after the first few weeks of treatments either but I learned to like Ensure malts(strawberry) and creamy soups.

    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    jtl said:

    Pat
    Not sure what his problem is but I know if it were me I would ditch the trach since apparently it is his idea to keep it in case he has an aspiration issue again. He told me he is afraid to have it removed. That being said maybe he is also not forcing himself to swallow either. People are all different as we are well aware. I remember when one of my docs said you will need a PEG and may as well get it now. All that did was make me work harder to avoid getting one.

    Good luck with the treatments. I didn't have a lot of success with solid food after the first few weeks of treatments either but I learned to like Ensure malts(strawberry) and creamy soups.

    John

    The emotions of recovery,
    are very important, as you incidate. It's hard to sort this out from a distance. I'm kind of a full-court-press type of patient, too. Just show me the direction and I'll jump through whatever hoops I have to to get there as quickly as I can. All I can say about your friend is that we've seen others that have had very significant ccomplications after rads, which preclude removal of tracheostomy, and continuation of PEG. BUT, if I were him, I'd be pushing the docs for what to do to get past this stuff, if possible. And, yea, who would want a trache unless they had to have one. It took me about a month to heal the site enough to stop leaking air out of my neck after they removed mine. It was a long month.

    Pat

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