Getting the All Clear

jthornsbury
jthornsbury Member Posts: 62
in Head and Neck Cancer #1

Friends,

When have you been told you will get the "all clear" if there is such a thing in regards to cancer? I was told major milestone at year one all clear and then at year three most would say you are out of the woods. Most reoccurances happen within the first year so after that survival odds go way up. Just wondering what others have been told or experienced. Dont like to dwell on this but wanted to know what others have been told as I start the first scan after treatment and the "routine scan" schedule.  Thanks.

 

Comments

  • cureitall66
    cureitall66 Member Posts: 913
    #2
    The cure....

    Hi jthorsbury,

    My loved one was told that he was NED(No Evidence of Disease) after his first scan after tx. From there we were told they will keep a close eye on him for the next 5 yrs. He will be scoped by his ENT  & ONC every 6-8 weeks for year 1 and 2 and they are only planning on chest xrays twice a year (we're pushing for a CT each year also) as that is when they feel there could be a liklihood of recurrence. Year 3, 4, 5 the weeks are spread out. They said if he remained NED for the 5 yrs (they would cut him loose) they would consider him "Cured". This was told to him by a teaching hospital (U of M). Now I know others may have been told differently. So, I'm not sure what really is factual. We are happy to have NED's and are hoping to continue to get them. Each year will be a milestone if there is no recurrence. I think year two is the real safety zone.

    So...my thoughts are to be happy with the NED that you will get and look forward to plenty more in your future!

    ~C

  • jthornsbury
    jthornsbury Member Posts: 62
    #3
    cureitall66 said:

    The cure....

    Hi jthorsbury,

    My loved one was told that he was NED(No Evidence of Disease) after his first scan after tx. From there we were told they will keep a close eye on him for the next 5 yrs. He will be scoped by his ENT  & ONC every 6-8 weeks for year 1 and 2 and they are only planning on chest xrays twice a year (we're pushing for a CT each year also) as that is when they feel there could be a liklihood of recurrence. Year 3, 4, 5 the weeks are spread out. They said if he remained NED for the 5 yrs (they would cut him loose) they would consider him "Cured". This was told to him by a teaching hospital (U of M). Now I know others may have been told differently. So, I'm not sure what really is factual. We are happy to have NED's and are hoping to continue to get them. Each year will be a milestone if there is no recurrence. I think year two is the real safety zone.

    So...my thoughts are to be happy with the NED that you will get and look forward to plenty more in your future!

    ~C

    Thanks

    for the information.  I am going to MD Anderson Houston.  Will being sending the same thoughts of NED results to you and your love one as well.

     

    J

  • jthornsbury
    jthornsbury Member Posts: 62
    #4
    cureitall66 said:

    The cure....

    Hi jthorsbury,

    My loved one was told that he was NED(No Evidence of Disease) after his first scan after tx. From there we were told they will keep a close eye on him for the next 5 yrs. He will be scoped by his ENT  & ONC every 6-8 weeks for year 1 and 2 and they are only planning on chest xrays twice a year (we're pushing for a CT each year also) as that is when they feel there could be a liklihood of recurrence. Year 3, 4, 5 the weeks are spread out. They said if he remained NED for the 5 yrs (they would cut him loose) they would consider him "Cured". This was told to him by a teaching hospital (U of M). Now I know others may have been told differently. So, I'm not sure what really is factual. We are happy to have NED's and are hoping to continue to get them. Each year will be a milestone if there is no recurrence. I think year two is the real safety zone.

    So...my thoughts are to be happy with the NED that you will get and look forward to plenty more in your future!

    ~C

    Thanks

    for the information.  I am going to MD Anderson Houston.  Will being sending the same thoughts of NED results to you and your love one as well.

     

    J

  • hwt
    hwt Member Posts: 2,328 Member
    #5
    cureitall66 said:

    The cure....

    Hi jthorsbury,

    My loved one was told that he was NED(No Evidence of Disease) after his first scan after tx. From there we were told they will keep a close eye on him for the next 5 yrs. He will be scoped by his ENT  & ONC every 6-8 weeks for year 1 and 2 and they are only planning on chest xrays twice a year (we're pushing for a CT each year also) as that is when they feel there could be a liklihood of recurrence. Year 3, 4, 5 the weeks are spread out. They said if he remained NED for the 5 yrs (they would cut him loose) they would consider him "Cured". This was told to him by a teaching hospital (U of M). Now I know others may have been told differently. So, I'm not sure what really is factual. We are happy to have NED's and are hoping to continue to get them. Each year will be a milestone if there is no recurrence. I think year two is the real safety zone.

    So...my thoughts are to be happy with the NED that you will get and look forward to plenty more in your future!

    ~C

    5 years

    It is my understanding they will watch me for 5 years but, if something was going to happen, it would most likely be in the first 18 months. My cancer was of the mandible. 1 year post tx, so far so good. My ONC has moved appts. from 4x a year to 3x. Surgeon wants to stay at 4x for a bit longer.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    NED so far (coming up on 15 months)

    Jthornsbury,

    I am coming up on my 5th  visit (every 3 months), 2 PETS, 1 CT, 4 scopes, tongue pulls and neck feels. At 6 months my chemo onc said “you are cured”, at 9 months rad onc and chemo onc said “see you later”, leaving all inspections up to the ENT. 

     I think it is 4x a year for first 2-years, 2x or 3x year for years 2 thru 5.  As needed 5+ years.

    Matt

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Similar..

    First two years are the greatest chance of a recurrence or new issue... But for insurances and everything else, five years seems to be the magic number.

    My MD's will continue to see me through next year (year four, in two weeks)... After that it's up to me if I want to continue with my ENT on an annual or semi-annual basis...which I intend to at least for a while...

    Oh, and as Matt says below..., my MD's feel that you are cured also at two years if you haven't had any issues and clean scans.

    JG

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