PET scan...again!

fishingirl
fishingirl Member Posts: 188
edited March 2014 in Head and Neck Cancer #1
Hi everyone!! I know I could probably search back some, but...could anyone help me out with this question? I just got my first PET scan results back. My ENT told me that it was "neither here, nor there". Meaning, he couldn't tell if it showed scarring, or still symptoms of the radiation I had, or cancer cells. He wants me to have a biopsy to be sure. But he told me that this ify result is quite common. Is this common? Meanwhile, I am feeling great! Lots of energy and gaining the weight back that I had lost.

Thanks:)
Cindy

Comments

  • Landranger25
    Landranger25 Member Posts: 210 Member
    #2
    Hi Cindy. I had a PET at 3
    Hi Cindy. I had a PET at 3 months which showed uptake at old cancer site as well as in right tonsil. Made me nervous because surgeon who did biopsy before treatment was supposed to take my tonsils but when I woke up they were still there. Then PET shows trouble there. Onco was not alarmed by result. Surgeon however said he could neither see nor feel anything there but was not so cavalier with PET. Watched me like a hawk until 6 month PET couple weeks ago. All clear that time. I know it is not easy but listen to the Docs. (More than one if possible) I had a cancer team. I wouldn't go more than 30 days without being scoped, palpated and whatever other tortures Doc see's fit to monitor until your next PET. My hands on guy is the surgeon/ENT. Even with a clear 6 month PET he wants to see me every 30 days. OK by me. Hope you can get some add'l input from your other doc's. good luck.

    Mike
  • fishingirl
    fishingirl Member Posts: 188
    #3
    Landranger25 said:

    Hi Cindy. I had a PET at 3
    Hi Cindy. I had a PET at 3 months which showed uptake at old cancer site as well as in right tonsil. Made me nervous because surgeon who did biopsy before treatment was supposed to take my tonsils but when I woke up they were still there. Then PET shows trouble there. Onco was not alarmed by result. Surgeon however said he could neither see nor feel anything there but was not so cavalier with PET. Watched me like a hawk until 6 month PET couple weeks ago. All clear that time. I know it is not easy but listen to the Docs. (More than one if possible) I had a cancer team. I wouldn't go more than 30 days without being scoped, palpated and whatever other tortures Doc see's fit to monitor until your next PET. My hands on guy is the surgeon/ENT. Even with a clear 6 month PET he wants to see me every 30 days. OK by me. Hope you can get some add'l input from your other doc's. good luck.

    Mike

    Thank you Mike:)
    This was my
    Thank you Mike:)

    This was my first PET scan. My last radiation treatment (I did not have chemo) was Oct.28 of last yr. So I had the PET scan approx. 6 months after treatment. I too, have been seeing someone every couple of months. Between surgeon, and Oncologist. I'm sure we'll know more after the biopsy:) One thing I do know...I can't worry about it! lol!!

    Cindy
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Cindy


    Don’t let it worry you, I am 5 years passed my last treatment and all my PET scans still show hot spots, even the biopsy showed positive, but it is not cancer but left over scar tissue that at one time was cancer according to the doctors at MD Anderson. Keep do and keep feeling good
  • fishingirl
    fishingirl Member Posts: 188
    #5
    Hondo said:

    Hi Cindy


    Don’t let it worry you, I am 5 years passed my last treatment and all my PET scans still show hot spots, even the biopsy showed positive, but it is not cancer but left over scar tissue that at one time was cancer according to the doctors at MD Anderson. Keep do and keep feeling good

    Thanks Hondo!! I just love
    Thanks Hondo!! I just love you!!! lol!! In a human/mankind way! Your comment eased my mind, even more.:D
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    fishingirl said:

    Thanks Hondo!! I just love
    Thanks Hondo!! I just love you!!! lol!! In a human/mankind way! Your comment eased my mind, even more.:D

    Cindy
    "something may have shown below your tongue," is what I was told by my ENT after my first PS, just 3-months post-treatment. My ENT blew it off as typical- telling me that area is prone to false-positives. They didn't schedule my next PS until 8-months later (!), and it came back entirely clean. I got the impression from my ENT that 3-months is way too early for anything that's really C to show-up. Might depend on how advanced your C was, though, and exactly what treatment you were given. You might want to ask your Onco a bottom-line: how in the world could it come back so soon after all you did to me in treatment? Not too sure your Drs. won't be made very uneasy by a question like that. I am of the opinion that a 3-month, after treatment, is a waste of time- the first should be a minimum of 6-months. FYI, and

    Believe

    kcass
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    Cindy, my 1st and 2nd pet
    Cindy, my 1st and 2nd pet showed activity. The docs didn't even tell me that on the first one. They only told me when the 2nd one (4 mos) showed activity. The ent did another biopsy and it was clear!!! so, the scans do show positives when they are really negative. VERY scary tho, to say the least...lol. I pray all is as well for you as it was for me!
    God Bless,
    Debbie
  • fishingirl
    fishingirl Member Posts: 188
    #8
    debbiejeanne said:

    Cindy, my 1st and 2nd pet
    Cindy, my 1st and 2nd pet showed activity. The docs didn't even tell me that on the first one. They only told me when the 2nd one (4 mos) showed activity. The ent did another biopsy and it was clear!!! so, the scans do show positives when they are really negative. VERY scary tho, to say the least...lol. I pray all is as well for you as it was for me!
    God Bless,
    Debbie

    Thanks sooo much guys!! And
    Thanks sooo much guys!! And girls! lol!! It is very scary. I am now waiting to have a biopsy done. Hopefully I don't have to wait to long. This waiting game! Thanks for the thoughts and prayers:)

    Cindy
  • backachedp
    backachedp Member Posts: 132
    #9
    fishingirl said:

    Thanks sooo much guys!! And
    Thanks sooo much guys!! And girls! lol!! It is very scary. I am now waiting to have a biopsy done. Hopefully I don't have to wait to long. This waiting game! Thanks for the thoughts and prayers:)

    Cindy

    PET Scan
    My Husband just got the all clear after having Surgery Monday..PET showed activoty in Tognue, and 2 near his Lungs that had gotten larger since the first PET...they cut those masses out cut a part of his tognue out and the Pathology came back CLEAN yesterday! Keep the Faith!! It is a very scarry hard time, but look at all the folks here that have had false postives on thier PET Scans and then get the ALL Clear!~it is amazing how far they have come...
  • fishingirl
    fishingirl Member Posts: 188
    #10
    backachedp said:

    PET Scan
    My Husband just got the all clear after having Surgery Monday..PET showed activoty in Tognue, and 2 near his Lungs that had gotten larger since the first PET...they cut those masses out cut a part of his tognue out and the Pathology came back CLEAN yesterday! Keep the Faith!! It is a very scarry hard time, but look at all the folks here that have had false postives on thier PET Scans and then get the ALL Clear!~it is amazing how far they have come...

    So true backachedp:) Good
    So true backachedp:) Good for your husband!!

    Cindy

Discussion Boards