"Essentially Negative" PET scan result!!

daisy366
daisy366 Member Posts: 1,458 Member
edited March 2014 in Uterine/Endometrial Cancer #1
Hi all,

I couldn't resist posting this. After a very long wait, I got the follow-up PET scan - 7 months after the first showed me lit up from pillar to post!! In retrospect I believe this was a false positive which someone mentioned on this board is common with PET scans particularly soon after surgery. I wish my doc would have told me this - though maybe he did not know how freaked out I was about this.

Anyway fast forward to present: Results are negative in all the previous lit up areas with some activity in my jugular lymph node which apparently has "brown fat" - so they will watch this.

I guess with all my talk, I am still dancing with NED!!! and I'm choosing to be very happy :)

Stay strong ladies!!

Mary Ann aka Daisy

Comments

  • nursey420
    nursey420 Member Posts: 52 Member
    #2
    Great news Mary Ann
    Great news Mary Ann Congrats
    Lisa
  • deanna14
    deanna14 Member Posts: 732
    #3
    Yeah Mary Ann!
    Congratulations on good scan results. Keep on dancing with NED! I plan on joining you soon. I will get a pet scan 3 weeks after I get my final chemo treatment. This will be my first pet scan as they have only done ct scans so far. I am a little nervous when I think about it... I pray that I will be dancing with NED too!

    Celebrate!
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #4
    Congratulations Mary Ann
    That is great news about the PET scan. I too would choose to be happy. Dancing with NED sounds wonderful. I am hoping I can say that by the end of the summer, too. I am so happy for you. HUGS to you.
  • shortmarge
    shortmarge Member Posts: 291
    #5
    Ro10 said:

    Congratulations Mary Ann
    That is great news about the PET scan. I too would choose to be happy. Dancing with NED sounds wonderful. I am hoping I can say that by the end of the summer, too. I am so happy for you. HUGS to you.

    Great News
    Dancing with you!!!!

    MIND, BODY AND SOUL!

    Hugs
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #6
    Ro10 said:

    Congratulations Mary Ann
    That is great news about the PET scan. I too would choose to be happy. Dancing with NED sounds wonderful. I am hoping I can say that by the end of the summer, too. I am so happy for you. HUGS to you.

    Woo Woo! Dance on!!
    Dancing with NED!! WONDERFUL!

    I've never been offered a PET scan. I think I will push for one after I finish my initial protocol July 1. How soon after radiation can you get a reliable PET scan? I thought I'd read that there can be false-positives as long as 3 months after radiation. The last thing I need is something FAKE to worry about, but I'd sure like to see if that tiny spot on my lung lights up onb a PET.

    Anyway, CONGRATULATIONS on the great results! So glad you can set that worry to rest!!
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #7
    lindaprocopio said:

    Woo Woo! Dance on!!
    Dancing with NED!! WONDERFUL!

    I've never been offered a PET scan. I think I will push for one after I finish my initial protocol July 1. How soon after radiation can you get a reliable PET scan? I thought I'd read that there can be false-positives as long as 3 months after radiation. The last thing I need is something FAKE to worry about, but I'd sure like to see if that tiny spot on my lung lights up onb a PET.

    Anyway, CONGRATULATIONS on the great results! So glad you can set that worry to rest!!

    Hi Linda,
    I can't answer your question about time to wait after radiation. I didn't have any radiation. Best wishes on your treatment - you'll be dancing with NED soon too!!!!

    Mary Ann
  • Reddie
    Reddie Member Posts: 72
    #8
    lindaprocopio said:

    Woo Woo! Dance on!!
    Dancing with NED!! WONDERFUL!

    I've never been offered a PET scan. I think I will push for one after I finish my initial protocol July 1. How soon after radiation can you get a reliable PET scan? I thought I'd read that there can be false-positives as long as 3 months after radiation. The last thing I need is something FAKE to worry about, but I'd sure like to see if that tiny spot on my lung lights up onb a PET.

    Anyway, CONGRATULATIONS on the great results! So glad you can set that worry to rest!!

    PET SCAN
    I'm so happy for you and I'm sure that you're in cloud nine! I was offer to have Pet scan to check if I have any tumor marker on my lymph nodes but the insurance has turn down so the doctor has picked the cat scan instead. I read that cat scan gives more details than Pet scan?? Just curious what's the difference between pet scan and cat scan.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #9
    lindaprocopio said:

    Woo Woo! Dance on!!
    Dancing with NED!! WONDERFUL!

    I've never been offered a PET scan. I think I will push for one after I finish my initial protocol July 1. How soon after radiation can you get a reliable PET scan? I thought I'd read that there can be false-positives as long as 3 months after radiation. The last thing I need is something FAKE to worry about, but I'd sure like to see if that tiny spot on my lung lights up onb a PET.

    Anyway, CONGRATULATIONS on the great results! So glad you can set that worry to rest!!

    Linda my new doctor told me you can get false positive
    PET scan results up to 3 months after radiation. That is why she will do a CT scan on me first and then if it shows something she will do a PET scan. We certainly don't want any false positive results. I guess today was your last external radiation. Congratulations on finishing another step of the treatment. Hope the internal radiation goes well for you. I still am having nausea mostly in the morning from my radiation treatments. Not any diarrhea though, and can eat most fresh fruits and vegetables which I love. Hope you can go back to eating the fresh fruits and vegetables soon, too. Enjoy your time when you do not have to go for a treatment everyday. It is is strange after you have been going every day for weeks.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #10
    Ro10 said:

    Linda my new doctor told me you can get false positive
    PET scan results up to 3 months after radiation. That is why she will do a CT scan on me first and then if it shows something she will do a PET scan. We certainly don't want any false positive results. I guess today was your last external radiation. Congratulations on finishing another step of the treatment. Hope the internal radiation goes well for you. I still am having nausea mostly in the morning from my radiation treatments. Not any diarrhea though, and can eat most fresh fruits and vegetables which I love. Hope you can go back to eating the fresh fruits and vegetables soon, too. Enjoy your time when you do not have to go for a treatment everyday. It is is strange after you have been going every day for weeks.

    Thanks everyone
    Hi all,

    Thanks for the good wishes from everyone. It's nice to not be in active treatment.

    After the big battle for the PET, my regime will be like yours Ro - first the CT and then the PET if there's a question. That's the only way my insurance will foot the bill.

    Re: what's the difference? My understanding is the PET shows rapid cell growth - which usually means cancer and it can detect it in small amounts. I guess doctor's have their preferences and of course, Insurance companies play a big part too.

    Mary Ann
  • thank you
    thank you Member Posts: 77
    #11
    daisy366 said:

    Thanks everyone
    Hi all,

    Thanks for the good wishes from everyone. It's nice to not be in active treatment.

    After the big battle for the PET, my regime will be like yours Ro - first the CT and then the PET if there's a question. That's the only way my insurance will foot the bill.

    Re: what's the difference? My understanding is the PET shows rapid cell growth - which usually means cancer and it can detect it in small amounts. I guess doctor's have their preferences and of course, Insurance companies play a big part too.

    Mary Ann

    Difference between CT and PET
    With the CT radiologists are able to see pictures of the body organs and detect abnormal tissues. But some times, esp after surgery and radiation treatment they can not say whether it is scar tissue, adhesions (two body parts attached to each other - happens frequently after surgery) or cancer. If they have any suspicion they order PET scan.

    With the PET scan, they give you glucose which is attached to a radio-active substance. This will be absorbed in your body, and it will "light up" in the picture if it is absorbed too much in a particular area.
    BUT it is not only cancer cells that absorb too much of this radioactive glucose. Any metabolically active cell will light up. Example: inflammation, infection, reaction to radiation treatment. So, with the PET scan they can not say 100% that this is a cancer, that is why the insurance companies do not always approve this expensive imaging. They can rule out that an abnormality seen in CT is not a cancer if it doesn't light up. But they can not rule in. They recommend not to do a PET within 3 months of radiation treatment because you have false positive results. My mom had increased uptake 6 months after treatment, and had a second surgery to biopsy this finding, and it was only scar tissue. It is a useful tool for the doctors but not a perfect tool. Hope this helps. Chrysoula
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #12
    thank you said:

    Difference between CT and PET
    With the CT radiologists are able to see pictures of the body organs and detect abnormal tissues. But some times, esp after surgery and radiation treatment they can not say whether it is scar tissue, adhesions (two body parts attached to each other - happens frequently after surgery) or cancer. If they have any suspicion they order PET scan.

    With the PET scan, they give you glucose which is attached to a radio-active substance. This will be absorbed in your body, and it will "light up" in the picture if it is absorbed too much in a particular area.
    BUT it is not only cancer cells that absorb too much of this radioactive glucose. Any metabolically active cell will light up. Example: inflammation, infection, reaction to radiation treatment. So, with the PET scan they can not say 100% that this is a cancer, that is why the insurance companies do not always approve this expensive imaging. They can rule out that an abnormality seen in CT is not a cancer if it doesn't light up. But they can not rule in. They recommend not to do a PET within 3 months of radiation treatment because you have false positive results. My mom had increased uptake 6 months after treatment, and had a second surgery to biopsy this finding, and it was only scar tissue. It is a useful tool for the doctors but not a perfect tool. Hope this helps. Chrysoula

    Thank YOU, 'thank you'! (love posting that. HA!)
    That really helps me, as I am anxious to have updated diagnostic imaging after my radiation ends July 1. That tiny 2.7 mm nodule on my lung that was noted on my April CT-scan will continue to worry me until I get confirmation that it is really the 'nothing' my oncologists believes it will turn out to be. I could see myself getting surgery like your mother did, just to get a definitive answer! That's probably not the wisest course, in retrospect, so I'll try to keep your cautions in mind. Thanks again.
  • A1pena
    A1pena Member Posts: 92
    #13
    congratulations!
    thank you for sharing this great news! I hope you dance with ned forever!

    kind regards,

    Amanda
  • shortmarge
    shortmarge Member Posts: 291
    #14
    A1pena said:

    congratulations!
    thank you for sharing this great news! I hope you dance with ned forever!

    kind regards,

    Amanda

    Mary Ann
    Whew... Breathing has become easier now, right! CONGRATULATIONS and may we dance with NED for many, many years!!!!

    MIND, BODY AND SOUL!

    Hugs,

    Marge
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #15
    shortmarge said:

    Mary Ann
    Whew... Breathing has become easier now, right! CONGRATULATIONS and may we dance with NED for many, many years!!!!

    MIND, BODY AND SOUL!

    Hugs,

    Marge

    someone with name hibi posting re: shoes multiple times here.


    dear all,

    someone named hibi has gone back to 2009 and posted something re: a kind of shoe, sounds like an advertisement. it's been done multiple times and is confusing because if we don't look at the date the person before hibi posted, we think it's a recent one, when in fact most are over a year old! so, i reported these postings as offensive, and they've been flagged.

    maggie
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #16
    Daisy doing the dance!!
    So happy to hear the news!!!!!!!!!!!!!!!!!!

    Go celebrate this weekend girlfriend!

    Laurie
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #17
    TiggersDoBounce said:

    Daisy doing the dance!!
    So happy to hear the news!!!!!!!!!!!!!!!!!!

    Go celebrate this weekend girlfriend!

    Laurie

    daisy's (mary ann') post dated one year ago!!
    sisters,


    at the risk of being redundant, i want to point out that several people here have responded in the last couple of days to a post mary ann wrote over a year ago, and is not a current one. the confusion in dates is because someone named "hibi" posted recently supposedly in response to a number of people's posts written in june 2009, so they all look as if they've just been written and are up to date, which they are not.

    i hope this is helpful. won't post about this again in any case.

    sisterhood,
    maggie
  • Songflower
    Songflower Member Posts: 608
    #18
    Your Great Pet!
    Wow! I love to be blown over with news like this. Thank goodness! I am happy too.

    Diane

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