False positive PET scan?

kgasmart
kgasmart Member Posts: 64 Member
in Head and Neck Cancer #1

Anyone havee sai experience with a false positive PET scan?

 

Had surgery for BOT cancer right side in December, followed up with 30 rad treatments ending in March. Went for a follow-up PET scan last week and rad onc called to say something ("at the low end of what we consider worrisome") basicallh in the exact same spot as the original cancer.

 

He says he finds it "unlikely" that it's a recurrence so soon in the same spot, and thinks whatever's showing up could be caused by the radiation/treatment. But, now my surgeon will take a look at the scan and decide if he wants to do a biopsy.

 

I'm confused by that, because both the surgeon and rad onc have done nasal endoscopies within the past month and have seen no new tumors - so what would they even biopsy?

 

Ugh. Had hoped that this journey was over, at least for a while. It just never seems to really end!

Comments

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #2
    hello

    Hello, it is most likely effects of radiation. After my mom's radiation there was a spot that kept showing up on the PET scan for few months, they did the biopsy in couple of places and it turned out to be nothing, then the spot just dissapeared.

     

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    #3
    Yeah, a PET that soon seems

    Yeah, a PET that soon seems more likely to detect radiation than cancer.  With 30 rounds your tumor is much more likely to still be cooking and shrinking than recurring and growing, if it survived at all.  I think we pushed mine to outside of six months.

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #4
    Yep

    False positives are very common at the 3 month mark. Mine cleared at the 6 month PET.

  • OKCnative
    OKCnative Member Posts: 326 Member
    #5
    Wanna hear one hellofva false

    Wanna hear one hellofva false PET Scan scare? Below is the recording i made when my first post treatment PET Scan was conducted and the oncologist told me I was bascially terminal!

    Turns out it was just infection!

    (you'll have to highlight, copy and paste)

    https://www.youtube.com/watch?v=zVtAGkZz1gs

  • skidog
    skidog Member Posts: 74 Member
    edited August 2018 #6
    I'm concerned too

    Based on my research (and even the rad oncologist at UW Health stated he waits 6 months for PET scans)...there seems to be ALOT of false reads from PET scans at 12 weeks post treatment. I just had my 6 week post rads check up (yesterday) for tonsil and right node cancer(HPV16+). All looks great and healing well based on the scope and exam from my Mayo Oncologist. However, when I broght up my concerns about getting a PET scan in 6 more weeks....he just said its standard procedure to get a PET at 12 weeks. He even admitted that they cant really tell the difference between infection, scarring, dead cells or cancer at 12 weeks. I think I'm going to advise against my doctors directives and tell him I will wait until the 6 month mark. any thoughts/advice from you all?

  • skidog
    skidog Member Posts: 74 Member
    #7
    OKCnative said:

    Wanna hear one hellofva false

    Wanna hear one hellofva false PET Scan scare? Below is the recording i made when my first post treatment PET Scan was conducted and the oncologist told me I was bascially terminal!

    Turns out it was just infection!

    (you'll have to highlight, copy and paste)

    https://www.youtube.com/watch?v=zVtAGkZz1gs

    holy crap

    ....you had to wait 10 days after hearing that aweful news? yikes...glad it was a false read.

     

  • OKCnative
    OKCnative Member Posts: 326 Member
    #8
    skidog said:

    I'm concerned too

    Based on my research (and even the rad oncologist at UW Health stated he waits 6 months for PET scans)...there seems to be ALOT of false reads from PET scans at 12 weeks post treatment. I just had my 6 week post rads check up (yesterday) for tonsil and right node cancer(HPV16+). All looks great and healing well based on the scope and exam from my Mayo Oncologist. However, when I broght up my concerns about getting a PET scan in 6 more weeks....he just said its standard procedure to get a PET at 12 weeks. He even admitted that they cant really tell the difference between infection, scarring, dead cells or cancer at 12 weeks. I think I'm going to advise against my doctors directives and tell him I will wait until the 6 month mark. any thoughts/advice from you all?

    I canceled my future PET

    I canceled my future PET scans and opted for CT with contrast and ultrasounds.

  • tbret
    tbret Member Posts: 76 Member
    #9
    Fun with PETs!

    Just to add another story that might make someone else sleep a little better some night.

    Just before I went in for my 18 month PET scan I somehow or other hurt my neck.  It was sore and painful and awful and... glowed on the PET scan.  

    Fortunately the radiologist noted "...consistent with muscular uptake" so I only had to half-panic.  It was either a sore muscile or the entire right side of my neck was now eaten-up.  It was a muscle.

    I get to go do it again in a few weeks!  Hooray!

    That means I've made it this long.  I enjoy something about every day.

  • momall25ofu
    momall25ofu Member Posts: 81 Member
    #10
    tbret said:

    Fun with PETs!

    Just to add another story that might make someone else sleep a little better some night.

    Just before I went in for my 18 month PET scan I somehow or other hurt my neck.  It was sore and painful and awful and... glowed on the PET scan.  

    Fortunately the radiologist noted "...consistent with muscular uptake" so I only had to half-panic.  It was either a sore muscile or the entire right side of my neck was now eaten-up.  It was a muscle.

    I get to go do it again in a few weeks!  Hooray!

    That means I've made it this long.  I enjoy something about every day.

    Hoping for a good scan next

    Hoping for a good scan next time!!

Discussion Boards