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How you catched your relapse?

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  • How you catched your relapse?

    First off all I want say thanks for all you guys, it's my first message on this forum but I spent a lot of time here and you all very helped me. My history you can find in my biography under this text. Right now I scary of recurrence and want to now how you catched this. If this was a regular CT scan? Or blood test? Or it was some kind of pain?

    Also I have another question. Do you have some link on best surveillance program in my case? How often need to do CT, blood tests, etc. I don't like my doctor, and I don't really believe him.

    03d/10m/17 - You have cancer.
    04d/10m/17 - Right Orchiectomy. Embrional cancer with yolk sac with LVI. AFP-8, else normal. CT clear.
    10m/17 - Start 4EP
    12m/17 - After three 3EP, AFP - 10
    01m/18 - Finish EP, AFP - 12. CT clear. My Oncologist propose me a next 2 cycles EP. I choose surveillance.
    02m/18 - AFP-6
    03m/18 - AFP-4
    05m/18 - AFP-4. CT clear.
    Last edited by Dgray; 09-05-18, 08:12 AM.

  • #2
    You can go to the nccn website and sign up for an account. Search for tc cancer and it lays it out in s flow chart as to what needs to be done and when.
    As for how did i catch my relapses. It was a combination of things. I followed my surveillance to the letter and it was caught. Another time i woke up and had a huge lump in my groin, still another time i was sick from very weird reasons. I got viral pink as an example in both eyes in the middle of summer, plus i got the flu so all of those things pointed me to seeing the doctor. Scan was ordered and bingo i relapsed. Usually surveillance will protocols catch it, or you start having things happen that just should not happen.
    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan
    Jan 2017 3 years cancer free "Pet/CT scan
    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

    Comment


    • #3
      Hi there

      My relapse occured about 2 yrs after the I/O.
      It was a swollen lymphnode in my opposite groin - i haven’t noticed it myself, it was caught on CT-scan. My markers were never raised.

      Comment


      • #4
        Dgray,

        Regarding Eodtech's reply:

        You want to follow the NCCN guidelines (https://www.nccn.org/). You can sign up on NCCN for free. Once on there look for the 2018 Testicular Cancer Guidelines.

        Anyways, I attached the relevant section from the latest guidelines that pertain to your case.

        Marker is obviously (bHCG, AFP, and LDH).
        H&P is short for History and Physical exam (basically a checkup with the doctor)

        So for example in the second year post treatments you would get a checkup every 3 months, a CT once or twice a year, and a Xray twice a year.

        - Matt
        March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
        March 13th: Left IO 100% Classic Seminoma
        6.3 x 5.1 x 3.8 cm, no invasion of anything
        LDH never fully normalized
        Stage: IS
        Watchful Waiting
        May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
        May 12th: started 3xBEP
        Neupogen during Cycle 2 and 3
        July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
        August 4th: Post Chemo CT/PET scan
        September 4th: Port removed
        July 10th 2018: 4 YEARS ALL CLEAR !

        Comment


        • #5
          Thank you guys for quick response.

          JeskiM69, why chest x-ray if CT more effective? Is it for money save?

          Comment


          • #6
            Regarding the chest x-ray: I honestly don't know. Obviously it would save both money and radiation exposure compared to a CT. I've been watching these guidelines for a few years now and it has changed quite a bit around imaging since I was diagnosed 4.5 years ago. I was getting CTs every 6 months for the first 2 years. Then I got my final one at year 3. I had 2 sets of x-rays totals during my surveillance over the last 4 years.....but that is what the guidelines were like when I started. Now they have gravitated more towards x-rays.

            So if you go in for checkup every 3 months, then that's 4 checkups a year. If you do CT at say the 1st and 3rd checkups and x-rays on the 2nd and 4th checkup then in that way you get an image taken for every checkup of that year

            Remember; those first 2 years are when the relapse rate is highest. That's when you need to be more vigilent about surveillance.

            ......my guess is that is closer to the truth of why they say that....the critical first 2 years and at least an image at every checkup.

            - Matt
            March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
            March 13th: Left IO 100% Classic Seminoma
            6.3 x 5.1 x 3.8 cm, no invasion of anything
            LDH never fully normalized
            Stage: IS
            Watchful Waiting
            May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
            May 12th: started 3xBEP
            Neupogen during Cycle 2 and 3
            July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
            August 4th: Post Chemo CT/PET scan
            September 4th: Port removed
            July 10th 2018: 4 YEARS ALL CLEAR !

            Comment

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