Follow up Questions

tonyb
tonyb Member Posts: 69
in Head and Neck Cancer #1
I am going back to the surgical oncologist tomorrow. I am trying to think of what to ask.

First, here is a run down on my situation. I am 6 months out from treatment, a lot of the saliva production is back, but swallowing seams to be getting more difficult in the last month or so, because i feel like i have a lump in my throat most of the time. Jaw pain is totally gone, but the scar on my neck from my lymph node-ectomy seams to be somewhat painful now that the feeling is returning to the side of my face and neck. (The loss of feeling on that side was a blessing in the first few weeks after surgery.)

My previous visits to the doctor, have always culminated in his canned statement of "i see nothing to be concerned about" should i assume that he is saying 'NED" or should i ask directly, if its the same? I wish that he would be more clear in that area.
Also i have had no follow up pet scan since treatment, should i ask for one if he does not suggest it himself? At what stage in after care did you folks get a pet scan?
Any advise would be appreciated. thanks, Tony

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    PET
    You say no follow=up PET scan since treatment, I presume that means you had one before treatment, but not since. If that's correct I would ask about the PET, usual time frames post treatment are in the 3 - 6 month range.

    Communicate with him about the swallowing issues,ask him at what point does he consider treatment successful and considers you cancer free.

    Some MD's you just need to drag information out of them I guess...

    Best,
    John
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #3
    Pet Scans
    Hi Tony,

    I had my first post treatment PET scan at 6 months. As Hondo and John said, most get one at 3 - 6 months. It doesn't hurt to ask what is their time table for you. Also let them know everything that is going on with you. Make a list if need be before hand so you don't forget anything.

    'I see nothing to be concerned about' sounds pretty good to me. Ask him if he does indeed mean NED. If you're still unclear on anything, ask them to explain it again. That's part of their job, to make sure you understand everything clearly. The only bad question is the one left unasked. You should be walking out of his office perfectly clear as to your current prognosis. Cheers.

    Jimbo
  • tonyb
    tonyb Member Posts: 69
    #4
    okay, thanks guys..............
    this is my list.
    1. what does "i see nothing to be concerned about really" mean.

    2. Why am i so cold all the time, and can we fix it?

    3 Why am i so exhausted all the time and can we fix it?

    4 What can we do about the lump in my throat that is making swallowing difficult?

    5 Do i need a pet scan and if so when would it be appropriate?
  • Greend
    Greend Member Posts: 678
    #5
    tonyb said:

    okay, thanks guys..............
    this is my list.
    1. what does "i see nothing to be concerned about really" mean.

    2. Why am i so cold all the time, and can we fix it?

    3 Why am i so exhausted all the time and can we fix it?

    4 What can we do about the lump in my throat that is making swallowing difficult?

    5 Do i need a pet scan and if so when would it be appropriate?

    #2 and #3
    These are common to almost all of us I would guess most of us are cold and still weak. I'm a long term survivor and still much colder than before C. Fatigue will get better over time but now the infamous "all of us are different so times may vary"

    He can/should do a scan down the throat to find the "lump" which I would recommend. PET scan; in agreement 100%
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    tonyb said:

    okay, thanks guys..............
    this is my list.
    1. what does "i see nothing to be concerned about really" mean.

    2. Why am i so cold all the time, and can we fix it?

    3 Why am i so exhausted all the time and can we fix it?

    4 What can we do about the lump in my throat that is making swallowing difficult?

    5 Do i need a pet scan and if so when would it be appropriate?

    I Forgot....
    My ENT is my main go to MD...he does the scopes, pokes and probes each time....

    He has always been the lead and the one I have the most follow-ups with. I'm not sure if that's the case with you.

    While my Chemo MD is still pretty active, I only see her every six months or so (my ENT just moved from every three months, to every four months) and I'm over 2 1/2 years post treatment.

    You questions are good from above....

    You might want to ask about blood labs if you haven't had any for awhile. It took a good 6 - 9 months post treatment before all of my blood came back within normal ranges.

    TSH and Free T-4 on you blood tests are indicators of Thyroid function...my TSH has been above normal for two years now, but the T4 is still in range. As of now I'm not on any synthetic thyroid meds.

    The cold is normal for us it seems, but could be Thyroid related.

    Exhaustion and being tired is also part of our norm, but again could be blood or thyroid related.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Skiffin16 said:

    PET
    You say no follow=up PET scan since treatment, I presume that means you had one before treatment, but not since. If that's correct I would ask about the PET, usual time frames post treatment are in the 3 - 6 month range.

    Communicate with him about the swallowing issues,ask him at what point does he consider treatment successful and considers you cancer free.

    Some MD's you just need to drag information out of them I guess...

    Best,
    John

    PET scan
    Agree with John, normaly your first PET is between 3 to 6 months, and then follow up every 6 months to a year. Swallowing has always been a big problem to me and continues to be one, as far as pain it has become my new normal everyday.

    Just have him give you a good look all over if he is seeing what he likes don’t worry you’re self to death. But make sure you are letting him know everything that is going on with your body. You might ask him if he feels a new PET scan is needed if he said no enjoy the rest of your life my friend.

    Hope it goes well for you Tony
    Hondo
  • tonyb
    tonyb Member Posts: 69
    #8
    just got back from the doctor
    i just got back from the doctor, and this morning the lump in my throat was not there. so i guess it was swelling. i mentioned this to him and he looked down my throat and felt of my throat on the outside. and he said that everything looks great. But that the swelling in my throat could be related to the thyroid thing. and he told me that wearing a jacket into his office kinda supported that diagnosis. I told him then that being cold and exhausted all of the time was on my list of symptoms to talk to him about.So, He set me up to do some blood work to investigate the thyroid.
    The meaning of "i see nothing to be concerned about and NED is about the same thing.
    He didn't want to schedule a pet scan if i were having itermittant swelling in my throat area and end up with a worthless result, so he thought it would be best to wait untill my next visit, and if the swelling has cleared up he will probably want to do a scan at that time. He told me not to worry, that as far as he could tell everything was about what could be expected. He thinks that maybe my thyroid is going south a little early.
    So thats where i am as of now, greatly releaved, and still getting good reports after all.
    So maybe those buckets of sweat and 3 nights of sleep i lost were for nothing after all.
    I am so relieved.
    Tony
    insert snoopy doing the happy dance here
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #9
    tonyb said:

    just got back from the doctor
    i just got back from the doctor, and this morning the lump in my throat was not there. so i guess it was swelling. i mentioned this to him and he looked down my throat and felt of my throat on the outside. and he said that everything looks great. But that the swelling in my throat could be related to the thyroid thing. and he told me that wearing a jacket into his office kinda supported that diagnosis. I told him then that being cold and exhausted all of the time was on my list of symptoms to talk to him about.So, He set me up to do some blood work to investigate the thyroid.
    The meaning of "i see nothing to be concerned about and NED is about the same thing.
    He didn't want to schedule a pet scan if i were having itermittant swelling in my throat area and end up with a worthless result, so he thought it would be best to wait untill my next visit, and if the swelling has cleared up he will probably want to do a scan at that time. He told me not to worry, that as far as he could tell everything was about what could be expected. He thinks that maybe my thyroid is going south a little early.
    So thats where i am as of now, greatly releaved, and still getting good reports after all.
    So maybe those buckets of sweat and 3 nights of sleep i lost were for nothing after all.
    I am so relieved.
    Tony
    insert snoopy doing the happy dance here

    Good News
    Tony,

    Sounds as though your visit went as well as could be hoped for. Great. Keep D
    dancing and Cheers.

    Jimbo
  • Ingrid K
    Ingrid K Member Posts: 813
    #10
    Jimbo55 said:

    Good News
    Tony,

    Sounds as though your visit went as well as could be hoped for. Great. Keep D
    dancing and Cheers.

    Jimbo

    congrats
    Sounds like good news to me ! Congrats !
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    tonyb said:

    just got back from the doctor
    i just got back from the doctor, and this morning the lump in my throat was not there. so i guess it was swelling. i mentioned this to him and he looked down my throat and felt of my throat on the outside. and he said that everything looks great. But that the swelling in my throat could be related to the thyroid thing. and he told me that wearing a jacket into his office kinda supported that diagnosis. I told him then that being cold and exhausted all of the time was on my list of symptoms to talk to him about.So, He set me up to do some blood work to investigate the thyroid.
    The meaning of "i see nothing to be concerned about and NED is about the same thing.
    He didn't want to schedule a pet scan if i were having itermittant swelling in my throat area and end up with a worthless result, so he thought it would be best to wait untill my next visit, and if the swelling has cleared up he will probably want to do a scan at that time. He told me not to worry, that as far as he could tell everything was about what could be expected. He thinks that maybe my thyroid is going south a little early.
    So thats where i am as of now, greatly releaved, and still getting good reports after all.
    So maybe those buckets of sweat and 3 nights of sleep i lost were for nothing after all.
    I am so relieved.
    Tony
    insert snoopy doing the happy dance here

    Sounds Productive
    Sounds like you had a productive meeting and set a good foundation for future dialog.

    The thyroid going south is fairly common considering the radiation....,it's usually easily treated with meds.

    Also good communication concerning the PET...the main problem with early PET scans is residual showing up as false positives.

    Do the dance bro...

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    Skiffin16 said:

    Sounds Productive
    Sounds like you had a productive meeting and set a good foundation for future dialog.

    The thyroid going south is fairly common considering the radiation....,it's usually easily treated with meds.

    Also good communication concerning the PET...the main problem with early PET scans is residual showing up as false positives.

    Do the dance bro...

    Best,
    John

    Tony

    Sounds like great news my friend, the Thyroid can give a lot of problems so hope you plan on getting it checked as soon as possible.

    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #13
    Hondo said:

    Tony

    Sounds like great news my friend, the Thyroid can give a lot of problems so hope you plan on getting it checked as soon as possible.

    Hondo

    Tony
    Glad your visit went well. I will do the snoopy dance  right along with ya!
  • tonyb
    tonyb Member Posts: 69
    #14
    thyroid
    yup doctor comfirmed it with the blood test results. thyroid is on its way out, a little early but it was gonna go out sooner or later. It makes me feel better to know that i am gonna feel better soon. maybe no more exhaustion, or feeling cold, (and i hope no more swelling in my neck area). Thanks guys for putting me at ease there. You know, this time out i was more worried, than i was when i got the original diagnosis of cancer, back last year. Thanks ahgain, Tonyb
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #15
    tonyb said:

    thyroid
    yup doctor comfirmed it with the blood test results. thyroid is on its way out, a little early but it was gonna go out sooner or later. It makes me feel better to know that i am gonna feel better soon. maybe no more exhaustion, or feeling cold, (and i hope no more swelling in my neck area). Thanks guys for putting me at ease there. You know, this time out i was more worried, than i was when i got the original diagnosis of cancer, back last year. Thanks ahgain, Tonyb

    Cool Deal
    Glad it worked out....figured it might just be the thyroid.

    It's not uncommon to be gun shy now since you had the original diagnosis....

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #16
    Skiffin16 said:

    Cool Deal
    Glad it worked out....figured it might just be the thyroid.

    It's not uncommon to be gun shy now since you had the original diagnosis....

    Best,
    John

    Thyroid
    Well at least now maybe they will give you thyroid meds and you may feel better.
  • Pam M
    Pam M Member Posts: 2,196
    #17
    tonyb said:

    just got back from the doctor
    i just got back from the doctor, and this morning the lump in my throat was not there. so i guess it was swelling. i mentioned this to him and he looked down my throat and felt of my throat on the outside. and he said that everything looks great. But that the swelling in my throat could be related to the thyroid thing. and he told me that wearing a jacket into his office kinda supported that diagnosis. I told him then that being cold and exhausted all of the time was on my list of symptoms to talk to him about.So, He set me up to do some blood work to investigate the thyroid.
    The meaning of "i see nothing to be concerned about and NED is about the same thing.
    He didn't want to schedule a pet scan if i were having itermittant swelling in my throat area and end up with a worthless result, so he thought it would be best to wait untill my next visit, and if the swelling has cleared up he will probably want to do a scan at that time. He told me not to worry, that as far as he could tell everything was about what could be expected. He thinks that maybe my thyroid is going south a little early.
    So thats where i am as of now, greatly releaved, and still getting good reports after all.
    So maybe those buckets of sweat and 3 nights of sleep i lost were for nothing after all.
    I am so relieved.
    Tony
    insert snoopy doing the happy dance here

    Great News, Tony
    And now I've got Snoopy's song playin in my head - that's good, too - I love that song.

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