Surgery....Postponed!!!

Jimbo55
Jimbo55 Member Posts: 590 Member
in Head and Neck Cancer #1
A very brief summary of the past 2 weeks:

7 month post rad/chemo PET/CT scan shows a hot spot at original cancer site on BOT.

Surgery recommended.

I continually inquire about the possibility of 'false positives'.

2nd and 3rd opinions: Scope looks normal, physical exam looks normal, PET/CT looks not good. MRI recommended to confirm PET/CT results.

MRI shows hot spot probably not a tumor and may be a 'false positive'.

I had already come to terms with needing to have the surgery, in fact it was scheduled for next week. With the results of the MRI, the medical team has decided to postpone the surgery. They have scheduled a follow up PET/CT in 2 months. (Each of the 3 Med teams agree on this part) If the 'hot spot' gets bigger, well then surgery is on the horizon.

Needless to say my wife and I are pretty stoked right about now. Cheers

Jimbo

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Jimbo

    The waiting is hell but if the PET shows no new growth then it is the right discussion. Remember I have been lighting up the PET for 6 years now, but nothing is getting bigger it just kind of stays there.

    All the best to you my friend
    Hondo
  • Glenna M
    Glenna M Member Posts: 1,576
    #3
    Wonderful news
    I'm reading this a great news and it's only a false positive. I'm glad my doctors are big on using the PET after treatment and rely more on the CT. I don't think my nerves could handle too many "false positives".

    Take your wife out and celebrate the good news...NO surgery.

    Stay strong,
    Glenna
  • rozaroo
    rozaroo Member Posts: 665
    #4
    Glenna M said:

    Wonderful news
    I'm reading this a great news and it's only a false positive. I'm glad my doctors are big on using the PET after treatment and rely more on the CT. I don't think my nerves could handle too many "false positives".

    Take your wife out and celebrate the good news...NO surgery.

    Stay strong,
    Glenna

    Great New's
    My Dr's are doing the same with me. Just had blood work at 7am this morning then follow up ct scan in two week's. My nerves are shot & I can only do so much shopping's. & eating. I hope my new's is like yours.I am praying pretty hard for us all! All my best.
    Roz
  • luv2cut1
    luv2cut1 Member Posts: 288
    #5
    YES!!!!!!!
    That is wonderful news! Go celebrate!

    Praying that your news will be good as well, Roz.

    Myka
  • Ingrid K
    Ingrid K Member Posts: 813
    #6
    luv2cut1 said:

    YES!!!!!!!
    That is wonderful news! Go celebrate!

    Praying that your news will be good as well, Roz.

    Myka

    good nesws
    Jimbo: No surgery is always good news --and spring is coming so you can enjoy the next few months and put it out of your mind for a while. (try to at least)

    Roz: wish you the same good results -- it's always good for any of us to hear the good news stories.....

    we pray that some day they will outweigh the not so good news stories.
  • donna340
    donna340 Member Posts: 72
    #7
    Congrats!
    Congrats on the good news!
  • Kimba1505
    Kimba1505 Member Posts: 557
    #8
    donna340 said:

    Congrats!
    Congrats on the good news!

    3 out of 3 say the same thing...
    ...must be a huge relief. It's good to have folks like Hondo who remind us that "lighting up" can just be part of the new normal. Jim enjoy the next two months, on the way to the next 6 month, on the way to the next year...We are all on the ride, coast when you can.
    Kim
  • Hal61
    Hal61 Member Posts: 655
    #9
    Way to stay
    Great News Jimbo! I applaud you for keeping at it. You didn't let the docs rush you into a treatment solution. It's a tightrope walk sometimes, and I'm so glad you're not having surgery based on uncertainty.

    best, Hal
  • Greg53
    Greg53 Member Posts: 849
    #10
    Hal61 said:

    Way to stay
    Great News Jimbo! I applaud you for keeping at it. You didn't let the docs rush you into a treatment solution. It's a tightrope walk sometimes, and I'm so glad you're not having surgery based on uncertainty.

    best, Hal

    Jimbo, Roz
    Jimbo,

    Way to keep after the docs and being proactive.

    Nothing but positive thoughts coming your and Roz's way!!

    Greg
  • honeybelle22
    honeybelle22 Member Posts: 70
    #11
    Hondo said:

    Hi Jimbo

    The waiting is hell but if the PET shows no new growth then it is the right discussion. Remember I have been lighting up the PET for 6 years now, but nothing is getting bigger it just kind of stays there.

    All the best to you my friend
    Hondo

    Jimbo
    Glad to hear good news.. these false positives are the worst. Make a person nuts. But glad your on your way to a great summer. Enjoy. Rose
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #12
    Greg53 said:

    Jimbo, Roz
    Jimbo,

    Way to keep after the docs and being proactive.

    Nothing but positive thoughts coming your and Roz's way!!

    Greg

    False positive
    This is why i am sort of glad that I am not having a PET in a way. I really don't think I could take the stress of a false positive. I just worry too much. I would be back on lexapro, I would be an anxious wreck.

    Jimbo, i think that was a good idea to postpone the surgery and have them watch you like a hawk. Once you have the surgery there is no going back.

    I only had a biopsy on my tongue and that was bad enough. Thinking about surgery scares the heck out of me.

    Jimbo, prayers that all is well and that is just a false positive.
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #13
    Congrats Jimbo, Hopefully
    Congrats Jimbo, Hopefully everything goes your way. May your only problem be just trying to get the golf ball to go in the little round hole!!! Best Wishes, Homer & Connie
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
    connieprice1 said:

    Congrats Jimbo, Hopefully
    Congrats Jimbo, Hopefully everything goes your way. May your only problem be just trying to get the golf ball to go in the little round hole!!! Best Wishes, Homer & Connie

    Jimbo
    Good to hear your Drs. hit the brakes on the surgery. Got my next PS/CT coming up on 4/4, and thanks to this family I am very aware of the false-Positive thing with the tests. Wheras my ENT earned some respect by not being concerned with "something may have shown" with my first post-tx test, I recently got a surprise from my regular Dr. I had tried to get a prescription for just one Xanax pill for before this next test, which he refused, and I mentioned some things I'm doing to try and avoid a false-Positive. He makes like he's not even aware that a false-Positive is possible! You, Jimbo, and Hondo are proof-Positive that they are.

    kcass
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #15
    Kent Cass said:

    Jimbo
    Good to hear your Drs. hit the brakes on the surgery. Got my next PS/CT coming up on 4/4, and thanks to this family I am very aware of the false-Positive thing with the tests. Wheras my ENT earned some respect by not being concerned with "something may have shown" with my first post-tx test, I recently got a surprise from my regular Dr. I had tried to get a prescription for just one Xanax pill for before this next test, which he refused, and I mentioned some things I'm doing to try and avoid a false-Positive. He makes like he's not even aware that a false-Positive is possible! You, Jimbo, and Hondo are proof-Positive that they are.

    kcass

    Kent Cass
    kcass, I also would not be aware of such things as false positives on these PET/CT scans if it were not for this great family of folks here.

    When I was getting the 2nd and 3rd opinions I specifically mentioned my concerns about this. For some unknown reason(s), head and neck cancers especially base of tongue are more susceptible to showing false positives post treatment. They recommended getting an MRI to further evaluate the PET/CT hot spot. On researching MRI's, I came across this: "MRI can be particularly useful for showing whether tissue left behind after treatment is tumor or not." Cheers

    Jimbo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #16
    Jimbo55 said:

    Kent Cass
    kcass, I also would not be aware of such things as false positives on these PET/CT scans if it were not for this great family of folks here.

    When I was getting the 2nd and 3rd opinions I specifically mentioned my concerns about this. For some unknown reason(s), head and neck cancers especially base of tongue are more susceptible to showing false positives post treatment. They recommended getting an MRI to further evaluate the PET/CT hot spot. On researching MRI's, I came across this: "MRI can be particularly useful for showing whether tissue left behind after treatment is tumor or not." Cheers

    Jimbo

    Another problem that I have
    Another problem that I have with these tests, I am allergic to the diagnostic dye. I had gotten a kidney IVP done and when they put the dye in I had an asthma attack, couldn't breathe.... Scared me half to death. Ended up in the emergency room.

    My RO was the one who told me about false positives. He said as bad as my mouth was during radiation, that he was pretty sure that if I had a PET I would light it up.
  • Pumakitty
    Pumakitty Member Posts: 652
    #17
    Hi
    My dad had spot light up when he had his 3 month scan. His doctor decided to do the same thing and wait to see if it got bigger. His 9-month scan showed nothing. I hope the same will happen for you.

    Kathy
  • adventurebob
    adventurebob Member Posts: 691
    #18
    Cool
    That sounds like good news Jimbo. I'm gonnna hold that it's a false positive for you.

    Bob
  • Scambuster
    Scambuster Member Posts: 973
    #19
    cool news
    Jimbo,

    This sounds like good news. Just remember the Prep for Scans as you may be on a heavier Scanning protocol for a while. Best to minimize the effects if you can, and also ensure the results are as accurate as possible. I have that filed on my CSN page.

    Cheers
    Scam

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