Problems after two years NED

kingcole42005
kingcole42005 Member Posts: 178
in Head and Neck Cancer #1

I feel bad, haven't been on here in sometime, but I have been a creeper checking out peoples posts. Now here I am humbly crawling back for advice. I recently celebrated two years NED. I had high grade MEC in my submandibular salivary gland. It was removed along with the floor of my left mouth with reconstruction. All nodes clear. 30 rads. Now all of a sudden I am experiencing pain after eating with swelling under my tongue at surgical site and sometimes back of my tongue. The tissue feels, I guess "harder" under my tongue, for lack of a better word. They are going to do a CT, my surgical onco said he thinks its damage from the rads, that they can last for years. Also he said stress can cause some symptoms, my father passed away on the 4th. Anyone else have this experience? Any advice would be greatly appreciated.

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    None Other Than...

    You pretty much know the drill...

    It's not something , until they tell you it's something...

    Residual can last for a long time too...

    But at this point try to stay positive (I know easier said than done)..., but at this point, you've not been told it's cancer.

    So with that, try to stay positive, and hang in there.

    Thoughts and Prayers your way...

    John

  • Laralyn
    Laralyn Member Posts: 532
    #3
    It can be a vicious cycle.

    It can be a vicious cycle. You feel something you think is off in your mouth, and you start worrying. That increases stress, which can cause other effects that then make you feel off, and you worry even more. I think we've all been there. In fact, I was just there on Tuesday (posting about it in a minute).

    One thing that helped me when I was most stressed before and during treatments was to listen to a relaxation program before I fell asleep. The Andrew Johnson ones were especially helpful. I bought an app for my iPad and listened to it every night before I went to sleep. Maybe it can help you relax which can tone down stress symptoms, or at least help get through the wait to see a doctor. Hope it helps! :-)

    http://www.withandrewjohnson.com/

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
    the rads did it

    Kingcole42005,

     

    From the neck up we are each a lab for changes.  You’ve been NED for 2-years, I would expect it to continue.  I’ll side with your doctor and blame it on the rads.  Once the results from the CT scan are back, hopefully you can rest easy again.

     

    Best,

     

    Matt

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Laralyn said:

    It can be a vicious cycle.

    It can be a vicious cycle. You feel something you think is off in your mouth, and you start worrying. That increases stress, which can cause other effects that then make you feel off, and you worry even more. I think we've all been there. In fact, I was just there on Tuesday (posting about it in a minute).

    One thing that helped me when I was most stressed before and during treatments was to listen to a relaxation program before I fell asleep. The Andrew Johnson ones were especially helpful. I bought an app for my iPad and listened to it every night before I went to sleep. Maybe it can help you relax which can tone down stress symptoms, or at least help get through the wait to see a doctor. Hope it helps! :-)

    http://www.withandrewjohnson.com/

    Laralyn....

    Well looky at you..., nice photo...

    JG

  • kingcole42005
    kingcole42005 Member Posts: 178
    #6
    Laralyn said:

    It can be a vicious cycle.

    It can be a vicious cycle. You feel something you think is off in your mouth, and you start worrying. That increases stress, which can cause other effects that then make you feel off, and you worry even more. I think we've all been there. In fact, I was just there on Tuesday (posting about it in a minute).

    One thing that helped me when I was most stressed before and during treatments was to listen to a relaxation program before I fell asleep. The Andrew Johnson ones were especially helpful. I bought an app for my iPad and listened to it every night before I went to sleep. Maybe it can help you relax which can tone down stress symptoms, or at least help get through the wait to see a doctor. Hope it helps! :-)

    http://www.withandrewjohnson.com/

    Thank you very much for the link

    I know I shouldn't worry until I'm told otherwise, but unfortunately that is not the type of person I am. Worrywart does not even begin to describe me. Thanks so much for the positivity and the link. I do love to listen to relaxtion meditations they do help.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    kingcole42005 said:

    Thank you very much for the link

    I know I shouldn't worry until I'm told otherwise, but unfortunately that is not the type of person I am. Worrywart does not even begin to describe me. Thanks so much for the positivity and the link. I do love to listen to relaxtion meditations they do help.

    I'm thinking it's the rads, too

    So many folks come back here having rad problems after a long time of being out of treatment.....some years, and years out of treatment.  I'm like you.....being a worry wort is an understatement.....but if your Doc thinks it's probably rads, and you're keeping an eye on it....which you are.....then try to relax with it until somebody tells you it's not the radiation (the gift that keeps on giving). 

    p

  • ditto1
    ditto1 Member Posts: 660
    #8
    CivilMatt said:

    the rads did it

    Kingcole42005,

     

    From the neck up we are each a lab for changes.  You’ve been NED for 2-years, I would expect it to continue.  I’ll side with your doctor and blame it on the rads.  Once the results from the CT scan are back, hopefully you can rest easy again.

     

    Best,

     

    Matt

    Hey KC

    I agree with the others it aint until it is.  Im a worry wart like P51 so I tend to lean to wrong thoughts 1st and then work backwards until I feel better.  But we are who we are, so get things checked out and we will wait for the positive post that all is well.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #9
    ditto1 said:

    Hey KC

    I agree with the others it aint until it is.  Im a worry wart like P51 so I tend to lean to wrong thoughts 1st and then work backwards until I feel better.  But we are who we are, so get things checked out and we will wait for the positive post that all is well.

    Puckered at both ends here too

    That's code for "worrywart" southern style.  As it so happens, I just had my scan moved up 3 weeks from the regular schedule due to a "not really a lump, but some thickening, swelling under my left ear but above where my last lymph node was that had cancer in it"...I also have been having a few very painful shots of severe pain shooting through my left ear canal...but only for few seconds at a time...

     

    ...sooooo here I sit waiting to see the doc on Monday after scanning today CT w/contrast (they also follow my chest / lungs now since two scans ago they found some nodules that have since turned out to be only infection) ....

    Civil Matt just went through this ....so all that said and I have no advice but to say your prayers, keep thinking positive and let's just wait and see but enjoy every minute.

    I whispered a prayers yours is just the gift of rads and all is well :)

     

    Tim

  • AJW1966
    AJW1966 Member Posts: 68
    #10
    lots of bad stuff from rads

    I tend to underestimate the long term damage from rads. After only 4 months, i feel effects and have to realize that this will continue or get worse over time.

    Sad, but it's a small price to pay to be alive.

    I concur with others and have to say......rads + stress = bad things to the body!

    I try to keep my stress under control through God.

    Prayers and thoughts with you.

     

    Alan

  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #11
    AJW1966 said:

    lots of bad stuff from rads

    I tend to underestimate the long term damage from rads. After only 4 months, i feel effects and have to realize that this will continue or get worse over time.

    Sad, but it's a small price to pay to be alive.

    I concur with others and have to say......rads + stress = bad things to the body!

    I try to keep my stress under control through God.

    Prayers and thoughts with you.

     

    Alan

    Alan
    I have a different

    Alan

    I have a different viewpoint regarding the side effects. I believe that for most, well anyways for me, the side effects tend to lessen over time. The jury is still out on the long long term effects on the rads/chemo, but in the near term I think it gets better for most people. Cheers.

    Jimbo

  • AJW1966
    AJW1966 Member Posts: 68
    #12
    Jimbo55 said:

    Alan
    I have a different

    Alan

    I have a different viewpoint regarding the side effects. I believe that for most, well anyways for me, the side effects tend to lessen over time. The jury is still out on the long long term effects on the rads/chemo, but in the near term I think it gets better for most people. Cheers.

    Jimbo

    I do want to share your

    I do want to share your optimism but i just can't get my hopes up and have them crushed. It's all subjective when it comes to the cancer treatments and our bodies. I try to just stay on middle ground if possible and not be surprised.

    I will keep fighting the fight!

     

    Alan

  • NJShore
    NJShore Member Posts: 429 Member
    #13
    Sorry to hear...

    Kingcole,

    So sorry to hear about your Dad. That is certainly a very recent stress, so not surprising that stress might not be your good friend right now. I am hoping that your symptoms are explained away as healing or just confirmed as another gift of tx's after your CT and doctors appointments.

    My husband is only 10 weeks out of treatment, so we have no real world experience to share, just wanted to encourage you not to worry!

    Kari

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