Your follow-up schedule after tx...

cureitall66
cureitall66 Member Posts: 913
in Head and Neck Cancer #1

Hi All,

I was wondering if you each would mind telling me what your schedule of follow-up visits consisted of/and how often after tx. I know Kreg will be seen every 6-8 weeks with scope by his ENT, but he was unclear of his scan schedule, just that it was head to chest. I'm waiting to get some clarification on that and in the meantime would like to get some idea of what to expect and compare.

 

As always, thank you! 

~C

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
    According to Stanford -

    Stanford is backing off on followup scans, owing to the fact that the scans themselves can cause cancer. 

    I am now just over 2 1/2 years out from treatment.  I first saw my local ENT and my Stanford Head/Neck Surgical Oncologist alternating every six weeks.  After a year, I started seeing them every eight weeks, and I am still on that schedule.  At first, I saw my chemo oncologist and radiation oncologist on the same schedule, but after two years, I now see them every six months.

    I had a diagnostic MRI and a diagnostic PET-CT.  Two months post treatment, I got a baseline MRI.  Three months after treatment, I got a baseline PET-CT that showed no hotspots.  At two years, I got a PET-CT but it was a fight with my insurance company.  Stanford did not recommend a three-year PET-CT.  My two post-treatment PET-CTs showed a couple three tiny nodules in my lung. Stanford is following them, and did a 3 year Chest CT.  The Chest CT showed no changes in the nodules.  Stanford will follow the nodules for three years, and if they see no changes, they will not do any more Chest CTs. Stanford recommends annual Chest X-Rays.

    As always, I am scoped, prodded and palpated every eight weeks. My cancer was base-of-tongue so the doctors are all satisfied that they will be able to identify any recurrence via the scopes, scans, and cramming their fingers down my throat. Urg.

    I expect that this schedule will differ a bit for everyone, depending on your original diagnosis.

    Deb    

  • staceya
    staceya Member Posts: 720
    #3
    NCCN Clinical Practice Guidelines

    I struggled with this as well and finally my ENT took out the guidelines (by type and staging)

    Here is hopefully a link, if it doesn't work, I am sure someone will step in and fix it.

    I am sure there is some individualization that needs to be added to the process by your doctor.

    The site is free to register acess. But I cannot link to it here.

     

    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#head-and-neck

     

     

    http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #4
    staceya said:

    NCCN Clinical Practice Guidelines

    I struggled with this as well and finally my ENT took out the guidelines (by type and staging)

    Here is hopefully a link, if it doesn't work, I am sure someone will step in and fix it.

    I am sure there is some individualization that needs to be added to the process by your doctor.

    The site is free to register acess. But I cannot link to it here.

     

    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#head-and-neck

     

     

    http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf

    Actually

    Pursuant to these guidelines, I should have easily been allowed my two-year scan, and likely a three-year scan. Not sure what is up with my insurance company - Anthem Blue Cross.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    I go to the same

    Oncologist, and the same ENT office as Stacey (same office different ENT's)....I have an ENT appointment once a month until April, then it moves to every 2 months.  I got my 3 month scan in November, then they didn't say anything about another...and I got nervous.  I have a 90 day Oncology appointments and just went on March 5th, where they brought up another scan....but this time it is a CT/MRI not a PET.....and it is just of my neck and head, I guess.  Makes me nervous, because the ENT has already told me he'd see a reoccurance faster than a scan....but my worry is always my lungs....and nobody is looking there.

    So basically it's once a month for the ENT, every 90 days for the Onc.....and so far, some type of scan every 3 to 4 months...

    p

  • sassysrice
    sassysrice Member Posts: 117
    #6
    Waiting

    Jeff saw the ENT and he looked down with his camera 3 weeks post rad tx. The pet scan we were told to wait 3 months so it is scheduled for sometime in April. The Rad MD said the scan would still show inflamation and would not be accurate before 3 months.

    Sue

  • Grandmax4
    Grandmax4 Member Posts: 723
    #7
    I am

    one year, three and one half months out from robotic surgery that removed my epiglotis. When I was released from hospital, I started going every week for scope and speech/swallowing..I did this for about 1 month, then went to 3 weeks, then 6 weeks...right now I go every 4 months for scope. My speech and swallowing are excellent, after one year of a soft diet, I can now eat whatever I want.

    The last time I was there ( The James, Columbus Ohio) my Surgeon had a new assistant on his team, he started to set me up for a pet scan, but, my Dr came into the room and said it wasn't necessary...I have had no scans in one and one half years.

  • jcortney
    jcortney Member Posts: 503
    #8
    Early Bird

    Well I guess I'm the Eary Bird.  My Onc is doing a CT head/neck/chest at 6 wks post treatment and a PET at three months.  The CT will be done tomorrow, think I'll get much sleep tonight?

     

    Joe

  • peggylulu
    peggylulu Member Posts: 375
    #9
    jcortney said:

    Early Bird

    Well I guess I'm the Eary Bird.  My Onc is doing a CT head/neck/chest at 6 wks post treatment and a PET at three months.  The CT will be done tomorrow, think I'll get much sleep tonight?

     

    Joe

    scan

     Well I guess everyone is different in this too . I just had my first CT after rads at 4 months last Friday (NED yay!) A PET hasn't even been mentioned. I go to my ENT every 3 months and the same to Onc. Good luck tomorrow Joe .

    Peggy

  • cureitall66
    cureitall66 Member Posts: 913
    #10
    staceya said:

    NCCN Clinical Practice Guidelines

    I struggled with this as well and finally my ENT took out the guidelines (by type and staging)

    Here is hopefully a link, if it doesn't work, I am sure someone will step in and fix it.

    I am sure there is some individualization that needs to be added to the process by your doctor.

    The site is free to register acess. But I cannot link to it here.

     

    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#head-and-neck

     

     

    http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf

    Link from Stacey

    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#head-and-neck

  • cureitall66
    cureitall66 Member Posts: 913
    #11
    jcortney said:

    Early Bird

    Well I guess I'm the Eary Bird.  My Onc is doing a CT head/neck/chest at 6 wks post treatment and a PET at three months.  The CT will be done tomorrow, think I'll get much sleep tonight?

     

    Joe

    Blessings for tomorrow....

    Joe,

    Blessings sent for you for tomorrow. That's interesting they are doing a CT this early. Especially when the rads/chemo are still doing their job. We had the PET at our 12wks (3 month) and got our NED.....now just wondering how the scan schedule will be Smile

     

    I'm sure everything will be good for you tomorrow. Smile

  • jcortney
    jcortney Member Posts: 503
    #12
    cureitall66 said:

    Blessings for tomorrow....

    Joe,

    Blessings sent for you for tomorrow. That's interesting they are doing a CT this early. Especially when the rads/chemo are still doing their job. We had the PET at our 12wks (3 month) and got our NED.....now just wondering how the scan schedule will be Smile

     

    I'm sure everything will be good for you tomorrow. Smile

    My Onc told me the reason

    My Onc told me the reason that he likes to do them at six weeks when there are mets to the lymph nodes (I had them on both sides) because if they find anything surgery can be done quickly while everything is probably well contained.  He also told me the odds of finding anything is very remote.  Doesn't change the pucker factor.

    Thanks for the good wishes.

    Joe

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #13
    at their mercy

    Cris,

     

    Every 3 months for the first 2 years, every 6 months 2 – 5 years.  Nothing after 5 years.

     

    ENT every appt. (scope, look see & palpitate)

     

    Rad  & chemo onc at 3, 6 & 9 months (no more)

     

    PET/CT at 3 & 9 months.  Unless problem seen during exam or problem occurs, no more (I guess)

     

    Insurance and cancer screening guidelines take over once you are post treatment.  I would like to see a little more PET/CT action (proactive), but don’t think it is in the cards.

     

    I did not feel the cancer the first time around (I felt a lump).  I hope there is no second time around. 

     

    If I get worried, I’ll simply ask for a scan and proceed from there.  The H&N forum makes me want to think outside the box.

     

    Matt

  • staceya
    staceya Member Posts: 720
    #14
    cureitall66 said:

    Link from Stacey

    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#head-and-neck

    Thanks for posting the link!

    Smile

  • cureitall66
    cureitall66 Member Posts: 913
    #15
    CivilMatt said:

    at their mercy

    Cris,

     

    Every 3 months for the first 2 years, every 6 months 2 – 5 years.  Nothing after 5 years.

     

    ENT every appt. (scope, look see & palpitate)

     

    Rad  & chemo onc at 3, 6 & 9 months (no more)

     

    PET/CT at 3 & 9 months.  Unless problem seen during exam or problem occurs, no more (I guess)

     

    Insurance and cancer screening guidelines take over once you are post treatment.  I would like to see a little more PET/CT action (proactive), but don’t think it is in the cards.

     

    I did not feel the cancer the first time around (I felt a lump).  I hope there is no second time around. 

     

    If I get worried, I’ll simply ask for a scan and proceed from there.  The H&N forum makes me want to think outside the box.

     

    Matt

    Matt....

    Did you already have your 9 month scan? Then that's it for scans over the 5 yr?

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    YOOOO Sista...

    You have mine already I believe...

    Similar to Matt...

    First year - every 6 - 8 weeks ENT scopes, I think overall I had two CT,s and two PET's the first year... Regualr schedled was about three months post Tx.

    Blood work with Onc, every four months... Rads follow-up at six months and one year, then cut lose from him.

    Year two - scopes moved to 12 - 16 weeks

    Scans moved to every six months, a CT, then a PET..., same with blood work and onc follow-ups..

    Year three, scopes at six months with ENT, scans at six months along with blood work....

    As far as I know that schedule will continue, as I'm into year four now...

    As mentioned above, my ENT isn't big on the added scans, they are coming from my Onc...

    JG

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #17
    Life in the scan lane

    Cris,

    Yes to 9 month scan complete (NED).  Future scans?

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #18
    scared

    this thread scares me b/c u guys all get scoped but i never do.  sounds like i should start requesting it.

    God bless,

    debbiejeanne

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #19
    debbiejeanne said:

    scared

    this thread scares me b/c u guys all get scoped but i never do.  sounds like i should start requesting it.

    God bless,

    debbiejeanne

    Scopin...

    My ENT has scoped me every year since treatment... First year evey 3 months, next year every 4, third and now fourth, every 6 months...

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #20
    Skiffin16 said:

    Scopin...

    My ENT has scoped me every year since treatment... First year evey 3 months, next year every 4, third and now fourth, every 6 months...

    thanks 4 the info!
    God

    thanks 4 the info!

    God bless,

    debbiejeanne

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