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What should I actually be worried about for reoccurrence?

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  • What should I actually be worried about for reoccurrence?

    Hi again,

    I like many I'm sure, get worried about every little thing when you get close to an appointment, a little tinge in the survivor, some pressure below the belt, some lower back pain, anything really.

    So my question is to guys that have had reoccurrence, what did you feel? is there anything to look out for while waiting?

    I did my survivor check and found nothing out or the ordinary.
    I am on surveillance 9mo from stage 1 seminoma, small tumor rt invasion.
    Last edited by TheBlankPlank; 11-14-18, 09:20 AM. Reason: Spelling

  • #2
    I think we all can say that we know where you are coming from as far as wondering if every ache and pain is somehow related to our cancer.

    Something to keep in mind is that for the guys on active surveillance for stage I seminoma that relapse, the overwhelming majority of the relapses are caught by the CT imaging. Now, that doesn't mean ignore symptoms when you think something is wrong but rather to more assure you that aches and pains are normal and that they rarely (but obviously can be) a sign of the relapse.

    In a series of 753 patients at Princess Margaret Hospital, 99.1% of the relapses were caught radiologically.

    In another large series of 2483 stage I seminoma patients, 87% of the relapses were caught by CT imaging, 3% by elevated b-hCG and none were detected by the chest x-ray or physical examination.

    Again, please don't totally ignore any symptoms and I encourage guys to get to their doctor if they think something is wrong but perhaps rest a bit more assured that most likely it is not cancer related and your follow up appointments are just to confirm that all is still well. Also, it reinforces why the follow up CT scans are so important to keep up with.

    Oct. 2005 felt lump but waited over 7 months.
    06.15.06 "You have Cancer"
    06.26.06 Left I/O
    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
    06.30.06 It's Official - Stage I Seminoma
    Founded the Testicular Cancer Society
    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

    For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.


    • #3
      Thanks Mike! I really appreciate you taking the time to answer my question, I'm sure the little aches and pains now an again are unrelated but this year really shook up my anxiety.
      If anything persists I will definitely bring it up to my doctor, just to make sure.
      This site has truly helped me along this year. Thank you.


      • #4
        In the UK there seems to be very little education or advice on what signs to look out for in the case of a relapse. I'm still not sure myself. However, all those in surveillance and/or remission will have regular checks for 5 years anyway, of which should advise of any possible relapse.

        Although this concerns me as my initial cancer had spread so rapidly within weeks. I'm also just under a year later with a recent flu, back pain and hair loss. But all of these could have nothing to do with any TC related relapse. Getting to the doctor isn't always straightforward, and so I'm relying on the regular scheduled tests and meetings to keep me in check.
        Sep 2017 - Mass in left testicle (GP check, ultrasound, CT)
        Oct 2017 - Left I/O orchiectomy and prosthesis added
        Oct 2017 - Confirmed embryonal carcinoma with vascular invasion
        Oct 2017 - Increasing HCG levels
        Oct 2017 - Spread to lymph nodes in lungs
        Nov 2017 - BEPx3 begins
        Dec 2018 - HCG levels normalised
        Jan 2018 - Chemo done
        Feb 2018 - CT clear
        Jan 2019 - Still clear!


        • #5
          Unfortunately, there is very little TO look out for, which is why regular scans & blood work are so needed.Obviously, regular self checks are the best way to find a second primary, but a recurrence can really only be found by blood markers or scans. There are no RELIABLE symptoms to look for that would indicate a recurrence.
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP