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False Positive PET Scan ? hopefully so.

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  • RWA
    started a topic False Positive PET Scan ? hopefully so.

    False Positive PET Scan ? hopefully so.

    Dear Fellow TC Survivors and Friends - Happy New Year,

    I have gained much knowledge and insight from this forum over the last 1.5 yrs.

    I have yet to Post, however, I now feel compelled to as a result of my recent experience during Surveillance.

    A brief background on my case:

    In July 2011 I was diagnosed with Seminoma Stage IIB (bulky) largest lymph tumor ~8cm (thank you back pain !)

    I concluded BEP regimen without delay: in late Sept. 2012 (locally here in MA at Lahey Clinic)

    1st POST Chemo PET/CT showed complete response ~ mid Oct. 2012

    Recurrence - 2nd POST Chemo PET/CT showed increased SUV at site of largest residual Mass. as well as some SUV at pelvic nodes ~ Early Jan 2013

    PC-RPLND by Dr. Foster at IU on 1/24/13

    I believe 31 nodes were removed (left side) - Seminoma was only found in the PET active Node of residual tumor.

    NOTE: post surgery I battled chylous ascites for ~ 8 weeks finally resolving by diet and octreatide regimen (worst part of my fight by far)

    1st POST RPLND PET/CT: ~ April 10th 2013 - No evidence of disease

    2nd POST RPLND PET/CT: ~July 29th 2013 - No evidence of disease - Feeling pretty good about things NOW !

    But, now the story gets interesting again !

    3rd POST PRLND PET/CT: Nov 5th 2012 - SUV noted in one spot on left side between kidney and Psoas Muscle. A corresponding mass was not noted or identified on CT. Suspicious for Recurring Disease. My local Onc. strongly believes this is recurrence but wants clinical evidence. I contact Dr. E and he stated could be nothing at all or recurrence. He notes that in my situation (PCRPLND) PET scan is not reliable (too many false +) and should not be part of the surveilance. He and my local Dr. did agree that a follow up scan should be repeated in 6 - 8 weeks.


    - Next step was follow-up PET/CT on 12/18 - where PET continued to show activity in same spot and again no corresponding mass on CT. My local Dr. again feels it is recurrent disease. (note: I do not make markers). He was not definitive on the next step - So I went out to see Dr. E on 12/30

    - 12/30 appt. with Dr. E: He is 99% sure this is not recurrent disease and instead just a false positive PET scan. Reasons: rare to recur in field of surgery when perfromed by an expert and no visible mass, and activity in field of surgery could also be from inflammation / scar tissue formation.

    - I will continue with normal surveilance schedule CT Scan only no more PET Scans.

    I tell this story for two reasons:

    1. I found few antecdotes regarding false + PET scans on this forum. PET scans are a ying and yang, greates thing is sensitivity, weakness is also the sesitivity. Dr E. made a memorable quote he said to me...."Do you know the definition of a healthy person.......it's someone who has never had a PET Scan". With surveilance more is not always doing better - My Dr. was comfortable to keep the PET scan as it Identified the prior occurence. However, what good was it, since it could not be relied upon for clinical decision making and only succeeded at puting me in a grey area. If a mass on CT is what was needed to identify recurrence then surveilance from CT alone should have sufficed.

    2. UNCERTAINTY is something we all live with. And faced with my positive PET scan I made a very deliberate choice to assume it was a false positive until proven otherwise. I carried on quite well with limited stress, my wife was more worried than I, I kept telling her to relax this is nothing. Why, because as of yet it was not - and carrying on with low stress helps me to reserve my strength and mental focus for if the "bell should ring" for another round of the fight. With a strong positive outlook I enjoyed the holidays greatly with my four young boys. I also chose not to tell anyone about the finding, (except my wife) this also made it easier for me to deal with.

    Not sure what the future will bring - But for now I am enjoying and living life to the fullest. I am quite certain I am disease free, as certain as I was before the + PET Scan. The future may tell me otherwise and if I do find myself back in the infusion chair - I will certainly be happy that I did not spend the last several months a stressed and nervous wreck because for me waking up each day and living life on MY TERMS - is what winning the war is all about.

    Cheers and Happy New Year !

  • frankrcn
    replied
    My friend,

    I have read with interest your story and I agree with the words that you wrote... About the "false positive" in your Pet scan, yes it's true, sometimes this type of scan produces some results that have to be related with other issues and not to cancer... for example if you get cold, if you have fever, if you hurt yourself and so on... every little thing can show these lighty spots on the scan... I remember my case, my history is similar more or less than yours... I ended the BEP chemo treatment on the last month of September and the first Ct scan post chemo was clear... Then, on the last November, I had a Pet-Ct scan that showed some spots in all my back spine... At that time I suffered from strong pains in all my back side, couldn't move, and I was sure that the Pet scan would have recepted something, and so it was... But the radiologist explained to me that these spots were no tracks of cancer, but there was an inflaming process to my bone marrow because it was damaged from the BEP chemicals and was regrowing... Another thing that make false positives in the Pet scans, as far as I have understood, is when you are sitting on the chair taking the FDG contrast liquid and you accidentally move yourself... in that case the contrast liquid leaves lighty spots inside your body so, when you go under the machine to be scanned, they will appear on the test...

    This said, I admire you for the will power that you have in continuing your life without worrying about the future... and as Steve said, having four sons to grow makes you really busy and it's a motivation to enjoy the life more than usual

    A hug and Happy new year to you !!!!
    Frank

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  • S P
    replied
    Awesome! I love your attitude! It's not easy to not stress, but you've done as I've tried to, probably more successfully than me, and have pressed ahead and enjoyed life as best you can. Of course, having four young boys to enjoy is quite a blessing, and I'm sure they've kept both you and your wife quite busy. Children are such a blessing.

    Best of luck, and praying for a whole lot more nothing!

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