What type of follow up after treatments have ended?

depressed63
depressed63 Member Posts: 61 Member
in Head and Neck Cancer #1
Hello,

Husband PET is clear and the healing has begun. He had stage 4a throat cancer. Primary site on his tonsils and formed a tumor on his neck. He never got his tonsils out and he went through the chemo and radiation. I'm curious as to the kind of test your doctors have done after your first clean PET scan. The oncologist is only following up every 4 months and with no test unless he has any symptoms of concern. The radiologist is having his throat scoped every 3 months. He didn't' say for the first year, 2nd year and on. Please let me know what type of test should be done in the next five years. I'm very concerned since I've seen many who did get their tonsils out before their treatments started with the same type and my husband did not.

Thanks,

Donna in Ohio....P.S...thanks to everyone for all of the hope, prayers, and knowledge you have giving me through this long journey.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    There appears to be no industry standard
    so all we can do is tell you what's been done with us. I have had CT at 3 months and 9 months, PET at 6 and 12 months. While I don't think that's the gold standard, I'd be concerned about going with clinical follow-up only. My cancers have never been easy to spot early on physical exam. Also, what kind of "early symptoms" do these cancers actually produce? The answer is, not very many.

    If he's had a negative PET already from a stage 4, that's wonderful. Personally I'd be proactive and request another PET on down the road, maybe six or eight months from now. I'd do PET rather than CT also.

    Best regards.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Similarly
    ENT (my main md dude)....
    1st year: scopes every 6 - 8 weeks
    2nd year: scopes every 3 - 4 months
    3rd year: scopes every 4 - 6 months
    During all of those years, he periodically does a blood test (or tags on to someone elses), checking and monitoring TSH and Free T4 levels (thyroid).

    Chemo MD ....
    1st year: PET at 3 months, CT six months later and PET annually
    Blood work every 3 months monitoring GFR and CBC along with TSH and Free T4
    2nd year: CT at 6 months PET at next 6 months
    Blood work every 6 months monitoring GFR and CBC along with TSH and Free T4
    3rd year: same as above

    Rads MD ....
    Scope and follow-up at 6 months and one year, then cut lose....

    JG
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    Skiffin16 said:

    Similarly
    ENT (my main md dude)....
    1st year: scopes every 6 - 8 weeks
    2nd year: scopes every 3 - 4 months
    3rd year: scopes every 4 - 6 months
    During all of those years, he periodically does a blood test (or tags on to someone elses), checking and monitoring TSH and Free T4 levels (thyroid).

    Chemo MD ....
    1st year: PET at 3 months, CT six months later and PET annually
    Blood work every 3 months monitoring GFR and CBC along with TSH and Free T4
    2nd year: CT at 6 months PET at next 6 months
    Blood work every 6 months monitoring GFR and CBC along with TSH and Free T4
    3rd year: same as above

    Rads MD ....
    Scope and follow-up at 6 months and one year, then cut lose....

    JG

    This is the closest I have found
    This is what my insurance company uses. You have to register but all they want is an email and a password. Pretty simple. They actually publish recommended standards. Click on the guidelines link. Do not click on on the patient's guidelines as it is somewhat useless with pretty pictures. Then choose your type of cancer, "Head and Neck"
    The imaging guidelines are near the bottom of the table of contents. This is a really cool site with flowcharts to pick your next treatment goal depending on your diagnosis, kind of like fixing the wiring in your car, if it lights up here then proceed to there kind of stuff.


    National Comprehensive Cancer Network

    Once registered, click on NCCN Guidelines, middle of home page, then click on NCCN Guidelines for treatment of cancer by site (1st link choice-do not click on patient link), scroll down to "Head and neck", a wonderful 175 page PDF with every thing related to this cancer appears, Followup recommendations are on page 75, under the heading, "follow up recommendations"
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    ratface said:

    This is the closest I have found
    This is what my insurance company uses. You have to register but all they want is an email and a password. Pretty simple. They actually publish recommended standards. Click on the guidelines link. Do not click on on the patient's guidelines as it is somewhat useless with pretty pictures. Then choose your type of cancer, "Head and Neck"
    The imaging guidelines are near the bottom of the table of contents. This is a really cool site with flowcharts to pick your next treatment goal depending on your diagnosis, kind of like fixing the wiring in your car, if it lights up here then proceed to there kind of stuff.


    National Comprehensive Cancer Network

    Once registered, click on NCCN Guidelines, middle of home page, then click on NCCN Guidelines for treatment of cancer by site (1st link choice-do not click on patient link), scroll down to "Head and neck", a wonderful 175 page PDF with every thing related to this cancer appears, Followup recommendations are on page 75, under the heading, "follow up recommendations"

    Oh, man.....
    Now I gotta download a 175 page document on my verizon snail-mail pace mifi card. Thanks buddy:)

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