Update on Abnormal PET/CT

PJ47
PJ47 Member Posts: 376
in Head and Neck Cancer #1

Met with R/O today and now have written report from radiologist.  

Anyone ever have this result?  "Abnormal hypermetabolic activity along the course of the sternocleidomastoid."  Could be related to radiation therapy and/or surgery.  Not possible to exclude tumor infltration.  SUV values exten up to 5.  

This was the side of my neck where I had the dissection and lymph nodes removed and higher dose of rads.  

On a positive note, my R/O believes it is inflamation along the muscle where I had surgery and rads.  Still awaiting 2nd opinion from Vandy.

 

What say ye?

Lots of uncertainty, where's NED when you need him?  

 

PJ

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Hey

    with an SUV of only five, Cancer is not likely.  If this were malignant, SUV's of 10 or 20 would be expected.  I wouldn't get too worked up over this. 

     

    best

     

    Pat

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    I'm so glad that Pat's here

    to translate the medicalese.....I was thinking about when you were trying to decide exactly when to get your after treatment PET scan....sooner or later, or inbetween.  Avoiding false positives was the reason....wasn't it.

    I'm thinking that your next scan is going to show zip....nada....nothing.....that the radiation hitting the surgery area is probably what they're seeing.....that's my gut talking....Laralyn went through a lit up area for over a year.....and now it's NED all the way.....you're going to meet Mr. NED....

    p

  • ratface
    ratface Member Posts: 1,337 Member
    #4
    phrannie51 said:

    I'm so glad that Pat's here

    to translate the medicalese.....I was thinking about when you were trying to decide exactly when to get your after treatment PET scan....sooner or later, or inbetween.  Avoiding false positives was the reason....wasn't it.

    I'm thinking that your next scan is going to show zip....nada....nothing.....that the radiation hitting the surgery area is probably what they're seeing.....that's my gut talking....Laralyn went through a lit up area for over a year.....and now it's NED all the way.....you're going to meet Mr. NED....

    p

    I second that emotion

    I'm glad he is here also! Wish doctors would elaborate a bit more sometimes.

  • katenorwood
    katenorwood Member Posts: 1,912
    #5
    Hello PJ !

    Yes right around a yr. out I had the same thing. (maybe a bit higher count)  I went through a biopsy and it came back negative.  I agree it's probably related to tx's on that area.  (mine was)

    Please keep us updated on what they decide.  Wishing you only the best outcome !  Katie 

  • KB56
    KB56 Member Posts: 318 Member
    #6
    ratface said:

    I second that emotion

    I'm glad he is here also! Wish doctors would elaborate a bit more sometimes.

    Pat

    I had no idea what she was talking about or what it meant.   Pat is awesome and really helpful.   He gave me the suggestion to get on a preventative dose of dyflucan for Thrush and I'm still doing it today and it keeps it at bay.  

    Keith

  • PJ47
    PJ47 Member Posts: 376
    #7
    longtermsurvivor said:

    Hey

    with an SUV of only five, Cancer is not likely.  If this were malignant, SUV's of 10 or 20 would be expected.  I wouldn't get too worked up over this. 

     

    best

     

    Pat

    Hello Pat

    Hope your feeding tube is not too bad now, been thinking about you today.  

    Thanks for the encouragement.  I looked at my PET/CT scan for my work up in August before biopsy, and the BOT SCC tumor had SUV of 8. so I dunno.  I am not too worked up, just concerned at this point.  

    Where were you hiking in yur photo, I can't seem to read the sign?

    Happy Trails,

    PJ

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    PJ47 said:

    Hello Pat

    Hope your feeding tube is not too bad now, been thinking about you today.  

    Thanks for the encouragement.  I looked at my PET/CT scan for my work up in August before biopsy, and the BOT SCC tumor had SUV of 8. so I dunno.  I am not too worked up, just concerned at this point.  

    Where were you hiking in yur photo, I can't seem to read the sign?

    Happy Trails,

    PJ

     

    PJ,  praying for a second

    PJ,  praying for a second opinion with good news.  please let us know.

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    #9
    Well ...

    It might not have been NED, but it not the other, just not excluded yet. Remember it's not C untill the say it is, and they did not say anything like that. The SUV is still low and just keep good thoughts you will be fine.

    wmc

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #10
    PJ47 said:

    Hello Pat

    Hope your feeding tube is not too bad now, been thinking about you today.  

    Thanks for the encouragement.  I looked at my PET/CT scan for my work up in August before biopsy, and the BOT SCC tumor had SUV of 8. so I dunno.  I am not too worked up, just concerned at this point.  

    Where were you hiking in yur photo, I can't seem to read the sign?

    Happy Trails,

    PJ

     

    we all need distractions

    I was all prepared to go on this hike in 2010.  Gear strew all over the living room floor, food ready, in great shape.....  Then i got cancer.  So a year later, in 2011 I was all prepared to go on this hike.  Gear strewn all over the living room floor, food ready, back in great shape.....  Then I got cancer.  So a year later I finally went on the hike.  It was a wonderful experience.  This is the Ozark Highlands Tail, about 200 miles worth from Lake Ft Smith Arkansas to Highway 65.  Good thing I went then, can't do it now.  But what  a bunch of memories.

     

    Pat

  • PJ47
    PJ47 Member Posts: 376
    #11
    longtermsurvivor said:

    we all need distractions

    I was all prepared to go on this hike in 2010.  Gear strew all over the living room floor, food ready, in great shape.....  Then i got cancer.  So a year later, in 2011 I was all prepared to go on this hike.  Gear strewn all over the living room floor, food ready, back in great shape.....  Then I got cancer.  So a year later I finally went on the hike.  It was a wonderful experience.  This is the Ozark Highlands Tail, about 200 miles worth from Lake Ft Smith Arkansas to Highway 65.  Good thing I went then, can't do it now.  But what  a bunch of memories.

     

    Pat

    It looks beautiful there

    Glad you made it there!  Planning a trip to Tetons and Yellowstone soon.  In March when in Nashville to see surgeon,  I went on 4 hikes around the Mt Juliett area and one kayak trip and spent the entire day looking for fosils (crinoids mainly) at Douglas Lake.  I am easily distracted which is a blessing.  Never been to the Ozarks but would love to go.  So many places to hike...

    PJ

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    #12
    rads?

    Hi PJ,

    I read your profile and did not see any radiation therapy for you? Did I miss the rads or did you only do surgery? If the RO says inflammation that is what to believe. Second opinion will give you more certainly. Wait is always a pain but you have plenty of experience. Good luck, Don

     

    Ditto on the great posts from Pat. He is invaluable to translate some of the jargon for us. Thanks Pat!!

  • PJ47
    PJ47 Member Posts: 376
    #13
    donfoo said:

    rads?

    Hi PJ,

    I read your profile and did not see any radiation therapy for you? Did I miss the rads or did you only do surgery? If the RO says inflammation that is what to believe. Second opinion will give you more certainly. Wait is always a pain but you have plenty of experience. Good luck, Don

     

    Ditto on the great posts from Pat. He is invaluable to translate some of the jargon for us. Thanks Pat!!

    Guess I did not update my profile

    I did have 30 radiation treatments to BOT and both sides of my neck.  The left side of the neck which was where I had the one involved lymph node and the dissection  received a greater dose.  I suppose both the surgery and the radiation contributed to the response to the FDG.  Anyway still waiting for the second opinion, but RO is caring, smart, honest and anal and that is all good. 

    In wait and see mode,

     

    Thank you for good wishes,

    PJ

  • Guzzle
    Guzzle Member Posts: 710
    #14
    PJ47 said:

    Guess I did not update my profile

    I did have 30 radiation treatments to BOT and both sides of my neck.  The left side of the neck which was where I had the one involved lymph node and the dissection  received a greater dose.  I suppose both the surgery and the radiation contributed to the response to the FDG.  Anyway still waiting for the second opinion, but RO is caring, smart, honest and anal and that is all good. 

    In wait and see mode,

     

    Thank you for good wishes,

    PJ

    Hikes

    PJ/Pat, reading about your hikes which sound fantastic. IM very close to North Wales and the English lake district. I love hill ng in the countryside. America is so huge and diverse. G.

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