Dads first pet scan 8 weeks after treatment with hot spots....

AJG
AJG Member Posts: 29
edited February 2014 in Head and Neck Cancer #1

My dad had his first pet scan this week 8 weeks post treatment... We met with oncologist at mayo and he said still a spot in the side of the last tumor, a new small one on the other side of the tongue and a new one in the left lung...... What?! How can this be? He just went through horrible brutal treatment and now there is more and it spread!? How can this be? He doesn't think the lungs is cancer he thinks its an infection or inflammation of aspired saliva , so wants to do a lung biopsy?! He did an oral test with touch and camara and everything  felt really soft not hard like cancer... Now he want to order more biopsies, however, looks like that is done! He doesn't want anymore poking, cutting or poison in his body.. the good news is the oncologist thinks could be a false positive.... Has anyone else experienced this....? My mind and emotions are in a whirlwind! Dad doesn't want to go through with any biopsies. 

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    False positive

     

    If he is just 8 weeks out of radiation it is very possible they are seeing a false positive reading. I did a lot of PET Scans and a lot of them came back with false positive reading, but thanks to my doctors at MDA he knew a lot more then the first doctor who read the scan. Something you might also want to do is to get a second opinion from MD Anderson or someone like them, it can’t hurt anything. If you don’t mind I will keep your dad in my prayers.

     

    Hondo

  • hwt
    hwt Member Posts: 2,328 Member
    #3
    Hondo said:

    False positive

     

    If he is just 8 weeks out of radiation it is very possible they are seeing a false positive reading. I did a lot of PET Scans and a lot of them came back with false positive reading, but thanks to my doctors at MDA he knew a lot more then the first doctor who read the scan. Something you might also want to do is to get a second opinion from MD Anderson or someone like them, it can’t hurt anything. If you don’t mind I will keep your dad in my prayers.

     

    Hondo

    Biopsy

    A biopsy can give piece of mind if it is a false positive. In my brother's case, he was diagnosed in STL with stage 3 kidney cancer that moved to his lung. He went to Mayo and they insisted on a biosy of lung which determined he had 2 primary cancers, both state 1.  He was treated for such and has been clean 3 years. I had a recurrence and went to Mayo where they asked for the biospsy, when I said there wasn't one, they did one. It determined that we were dealing with the original cancer and that there was not a new or hidden primary. I think a biospy could bring relief.

    Prayers coming your Dad's way.

  • AJG
    AJG Member Posts: 29
    #4
    hwt said:

    Biopsy

    A biopsy can give piece of mind if it is a false positive. In my brother's case, he was diagnosed in STL with stage 3 kidney cancer that moved to his lung. He went to Mayo and they insisted on a biosy of lung which determined he had 2 primary cancers, both state 1.  He was treated for such and has been clean 3 years. I had a recurrence and went to Mayo where they asked for the biospsy, when I said there wasn't one, they did one. It determined that we were dealing with the original cancer and that there was not a new or hidden primary. I think a biospy could bring relief.

    Prayers coming your Dad's way.

    Unfortunately if his tongue

    Unfortunately if his tongue cancer moved to his lung it is not curable:( 

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    I agree with Hondo....

    Since he is only 8 weeks out of treatment, all these hot spots could be false positives....12 weeks out is the regular time span from the end of treatment, just because of the false positives (especially in the area of the radiation).  If a Dr. at Mayo wanted to biopsy my lung, I'd go for it....I don't think a lung biopsy is that big of a deal, and it could very well bring a huge relief to him and to you.

    p

  • Crazymom
    Crazymom Member Posts: 339 Member
    #6
    pet scan

    my doctor would not even do a pet scan at 8 weeks because of the risk of false positive.  they did ct scan for the first 12 weeks and all was well.  it was after that that they did the pet scan....don't panic....Ann

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    AJG said:

    Unfortunately if his tongue

    Unfortunately if his tongue cancer moved to his lung it is not curable:( 

     

    ajg, i agree with the others,

    ajg, i agree with the others, there's a good chance its false positives and the biopsy could yay or nay that so you'd at least know.  did the docs say it was incurable if it was in the lung?  it seems kind of early to be saying that but i'm not a doctor.  i understand your mind being in a whirlwind, my mind does that anytime i have a new ache or pain that can't be explained right away.  we have a saying here tho, "it's not cancer until they say it is", so please try to think positive.  we will all be praying for your dad and that the scan is showing false positives.  please keep us posted.

    God bless you and your family,

    dj

  • cid817
    cid817 Member Posts: 58
    #8
    False Positives

    My hubby had PET scan 12 weeks out and his thyroid lit up like a neon light!!  An ultra sound and biopsy showed no disease.  I hope and pray your dad's turns out the same. 

    Cindy

  • AJG
    AJG Member Posts: 29
    #9
    Thank you all!!! He met with

    Thank you all!!! He met with the oncologist today and he told dad not to do the lung biopsy, it's close to arteries and could be risky. He wants to wait another month and do another scan. I pray that all spots are false positives. Thanks again for all the prayers, as hard as this road has been I couldn't imagin walking it without our faith! 

     

  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #10
    AJG said:

    Thank you all!!! He met with

    Thank you all!!! He met with the oncologist today and he told dad not to do the lung biopsy, it's close to arteries and could be risky. He wants to wait another month and do another scan. I pray that all spots are false positives. Thanks again for all the prayers, as hard as this road has been I couldn't imagin walking it without our faith! 

     

    False Positives

    I had a PET/CT scan 3 months after radiation/chemo treatment for BOT SCC. It showed hotspots in the area. MD's recommended surgery. I had heard about the very real possibility of false positives through the great folks at this site. I went off for 2nd and 3rd opinions. An MRI was recommended which they said would verify if the hotspots were cancerous or false positives. The MRI was negative, thank goodness. A follow up PET/CT in another 3 months still showed the hot spots, although they were diminished in size from the previous scan. Good news since if it was cancer it would only get bigger, not smaller. I didn't see a clean PET/CT until 1 year out from treatment.

    I would recommend inquiring about having an MRI. Also it doesn't hurt to get a 2nd opinion. Hopefully your Dad is only seeing false positives. Cheers.

  • donfoo
    donfoo Member Posts: 1,773 Member
    #11
    Jimbo55 said:

    False Positives

    I had a PET/CT scan 3 months after radiation/chemo treatment for BOT SCC. It showed hotspots in the area. MD's recommended surgery. I had heard about the very real possibility of false positives through the great folks at this site. I went off for 2nd and 3rd opinions. An MRI was recommended which they said would verify if the hotspots were cancerous or false positives. The MRI was negative, thank goodness. A follow up PET/CT in another 3 months still showed the hot spots, although they were diminished in size from the previous scan. Good news since if it was cancer it would only get bigger, not smaller. I didn't see a clean PET/CT until 1 year out from treatment.

    I would recommend inquiring about having an MRI. Also it doesn't hurt to get a 2nd opinion. Hopefully your Dad is only seeing false positives. Cheers.

    MRI vs PET

    What I was told my my current ENT is, as we know, quite prone to false positives. MRI works better for certain locations; I believe he said it was better for soft tissue areas. Something like that. So, his approach is to rely more on MRI and frequent scopes instead of PET. I am on the fence about no PETs as they can detect distant mets. His point which I agree to somewhat is if you got distant mets you are in a different situation (i.e. pallative vs curative course of treatment).

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