Question- False Negatives and Positives

Clearblue
Clearblue Member Posts: 186
edited March 2014 in Head and Neck Cancer #1
Hi there

My wifes PET CT (4 months after a second partial larengectomy and 5 months after lung lumbectomy) came back clean and a mass of a previouse PETCT shrunk almost completely to 0.3 inches. but with no pathology lighting up there. So this is considered a reaon to be happy.

1.However there is a nodule about 0.2 inch on lung, below the resolution for pathology of the PET CT. Possibly remnant of a previouse infection. The Oncologist said its a good result, but we need to monitor it. I hate the phrase "monitor it".

2.Im not searching for trouble but how does one know if we have a false negative?
Is there another test that can be done or does it mean just wait Wait another 3 months till next PET CT?

3.This is after 2 months of erbitux.
What questions should we ask the Oncologist besides the above when we see him next week?

Happy July 4
Any comments
Clear

Comments

  • Scambuster
    Scambuster Member Posts: 973
    #2
    No answers ?
    Hi CB,

    I am happy to hear the Scans said all was good. I don't really see how you can detect a false positive unless you do another scan. Not a pleasant wait I'm sure but I can't see they have anyway to tell unless they do a biopsy or maybe bronchoscopy, and that last one would assume if there was anything, it would have to be actually in the bronchial passages to be obvious. I gather MRI's are generally less accurate than PET /CT's.

    How is she doing otherwise ?? Eating well, on the PEG still ?

    As for questions to your Docs, maybe see if they can do either of the two diagnostic test I mentioned above. Apart from that, how long before they should do another PET /CT and if perhaps an MRI is worthwhile.

    I hope it goes well.

    Scam
  • Clearblue
    Clearblue Member Posts: 186
    #3
    Scambuster said:

    No answers ?
    Hi CB,

    I am happy to hear the Scans said all was good. I don't really see how you can detect a false positive unless you do another scan. Not a pleasant wait I'm sure but I can't see they have anyway to tell unless they do a biopsy or maybe bronchoscopy, and that last one would assume if there was anything, it would have to be actually in the bronchial passages to be obvious. I gather MRI's are generally less accurate than PET /CT's.

    How is she doing otherwise ?? Eating well, on the PEG still ?

    As for questions to your Docs, maybe see if they can do either of the two diagnostic test I mentioned above. Apart from that, how long before they should do another PET /CT and if perhaps an MRI is worthwhile.

    I hope it goes well.

    Scam

    erbitux blues scam

    WIthout PEG for two months now, and doing well considering etc etc

    She had recurrence wihtin 2 months and three surgeries ( lumbectomy (for primary scc), and x2 larengects for scc, and now 9 weeks of Erbitux , no visible pathalogy PET CT sign of tumor, nor microscopic.

    The Oncologist claims the Erbitux must be working, but between u and me, he hasnt got the foggiest clue as to how long she should be on it; for life if possible.

    The "problem" is, that there is no let up re rash and radical face- burning sensations.
    Achne form etc etc. She's dried up as all hell and starting to crack up on heels, toes etc etc. she wants off it. He's pushing for her to go another 7 months, and they finally "compromised" for another month.
    For her , she says living to see the calender move on, but without much quality is not called living.

    It seems that there are no answers to our questions:
    - how long can a person stop the erbitux adn then restart, if at all?
    - how we deal with such fierce reaction?

    We have a closet of creams unused or ineffective She has challeg me to sleep covered in oil so that ill wake up tomorrow and finally shut up about what she should be trying.

    She's carrying 2 years of 4 surgeries and is dealing with the discomforts of repair, yet alone the erbitux. AND, because Fanconi Anemia are prone to cancer tumors, irrespective of recurrent ones, the three month pet ct waiting bears a greater weight.

    HAving said this, she got rid of her peg early and took it upon herself eat no matter what, and shes retainedher weight for the past 4 months now.

    I just havent been able to find someone that has done the long haul with erbitux, nor someone who recieved erbitux only. (this because she cannot have chemo & radiation will be a catastrophe, given what shes gone through to date)

    Wish i could sound more optimistic.
    Clear.

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