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  • Dealing with relapse anxiety

    Hello all you handsome misfits!
    I'm glad to have found this site, a lot of very well informed people with compassion.

    I need help figuring out how to keep my anxiety about relapse risk in check.

    The basics: I'm a seminoma 1A. I had my R testis removed in June (4.5cm, rete testis involved, hCG3.5 before surgery, below detection limit after), 2x7AUC carboplatin in July and August, and my first follow-up stretching over a period from mid-December to mid-February.

    I've been through a bit of a rough patch, because I wasn't communicating well with my first oncologist. We really locked horns over using MRI's for routine surveillance - she absolutely refused to consider it, and kept coming up with the strangest explanations for why. So, we decided to treat with adjunctive chemo (which was very unpleasant, but kept my mind fully occupied). Once I'd recovered from the chemo (at least, recovered enough to make a follow-up appointment), I was shocked to find out that her plan for follow-up surveillance was to do absolutely nothing for the first year, not even serum tumor markers. Fortunately, I also had a follow-up appointment with the surgeon, who, as a matter of routine, drew serum tumor markers, at least.
    On Dec 27th (2017), I found out that my hCG came back at 6.0 (it was 3.5 before surgery, below the detection limit on two occasions after). Of course I couldn't get hold of anyone (surgeon or oncologist) for 10 days after that, and apparently, there was nobody to cover for them to explain what it meant. As you can imagine, I got pretty worried waiting and waiting to find out.

    The oncologist drew a second hCG test, which was negative, and with no explanation whatever, told me not to worry about it. She was right "on the facts", I should have been at ease after the second test, but with no explanation or opportunity to discuss it, I felt abandoned, and my worst fears kept creeping in, despite my best efforts to be rational and cool about it. It really bugged me why the earlier one was positive - maybe I'd developed hypogonadism? (that can result in a false positive), or some other explanation? From what I've read, the list of things that can result in a false positive hCG is pretty slim, and none of them seemed to fit.

    Anyway, frustrated beyond the breaking point with the oncologist, I decided to seek a second opinion in Boston, and the guy I met up there couldn't have been more reassuring and clear about what was going on. Finally, everything made sense, he was able to explain things to me, not throw up some defensive smoke screen like my first oncologist. He drew a third hCG, which was also negative, and we scheduled an MRI for two weeks later, which was negative (I found out the results yesterday).

    I know rationally, I should be entirely relieved now, but I think I'm so amped up from all the uncertainty and BS I faced between learning about the errant hCG result on December 27th, and finally having the matter put to rest TWO MONTHS later, that it's going to take me some time to wind down.

    So one thing I've learned for the next round is to schedule the tests around any vacations or conferences the doctor may be going to!

    I've also learned to plan something nice for myself every day, whether it's a walk outside, or reading a book for pleasure, or calling a friend I haven't talked to in a while.

    But here's what I want to know from you all. I know rationally I should be cool. But I'm not. And it's really f'ing with my life. Some days it's all I can do to carry a load of laundry to the basement and back. It feels a lot like PTSD, I think (not that I've been diagnosed with that, but growing up gay in the 80's, there's some traumas there, and I'm basically familiar with how that works).

    How do you deal with anxiety about relapse? I know "it gets better" as you go through more surveillance cycles, but really, give me your stories, and tips about how to make it better...

    Painless lump 5/18/2017
    Orchidectomy June 2017 (4.5cm, rete testis involvement)
    Chemo Summer 2017 (2x7AUC carboplatin)
    No evidence of relapse since, but plenty of anxiety about it.

    I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

  • #2
    Hey glad you found us! I wouldnít stress the blood test. I too had a weird uptick post chemo. I contacted Dr. Einhorn and he said blood tests can be tricky. Sometimes they do weird things which is why we look not at a single test but trends. Yours is trending down and normal so a small increase isnít of huge concern Iíd imagine. I too though feel the anxiety. Every slight pain and stuff causes concern for me and Iíve found just keeping busy helps. Find something to do to keep your mind focused.
    3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!


    • #3
      Anxiety is terrible. It got so bad for me I went and did another ultrasound. If surviving testicle even itches wrong that is enough to bring back bad memories.
      It does not help that doctors do not know what causes (TC or arteries in my case) it and how to prevent it.

      One thing I learned is that youíve got to stop checking the ball, it will only irritate it, and make it ache. Which will only add to tour worry.


      • #4
        Thank you guys!
        Itís good to hear some solidarity there about the anxiety feelings.
        Had another tough day today, but I made myself get up and go on a long walk to meet a friend for lunch, so that helped.

        I do check the surviving nut now and again, but fortunately itís never occurred to me to check it more than once a week or so.

        So thanks for planting that idea in my head LOL!

        Iím looking forward to these feelings diminishing as I get further out from all that waiting and worry about the test results.

        Thanks again for your notes!
        Painless lump 5/18/2017
        Orchidectomy June 2017 (4.5cm, rete testis involvement)
        Chemo Summer 2017 (2x7AUC carboplatin)
        No evidence of relapse since, but plenty of anxiety about it.

        I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.


        • #5
          Dr. Einhorn actually had an editorial piece about tumor markers that is mainly about AFP but lumps beta-hCG into as well at:

          On thing that you may want to look into is a program developed in Australia (so most of the help resources are Australian in nature) but it is available to any TC guys world-wide is:

          The anxiety and even probable PTSD are real and not unusual so I wouldn't be hesitant in talking with someone if they are not self-manageable.

          In Boston, did you happen to find Dr. Sweeney at Dana-Farber?

          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 if you would like to chat privately so as to avoid any delays.


          • #6
            First, you should check your survivor MONTHLY not any more often than that. Checking more often just fuels anxiety.

            I personally have never doubted I was cured, I know I seem to be in a minority about that, but it's probably because I tend to be science based in my thinking so I believe the numbers that say I am very likely cured, & if not there werefurther treatments that would cure me.Never doubt that.There *IS* power in positive thought.

            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP


            • #7
              Thanks Mike & Dave,
              Yeah, I was already in therapy before this all began, and I'm so glad for it, I don't know how I would have made it through without my therapist's help!
              I've heard great things about Dr. Sweeney, but I'm actually going to someone at another Boston institution, someone who helped my grandfather through prostate cancer in the 70's and 80's.
              My seminoma is a lot less complicated than I am, if you know what I mean o_O, so a high priority for me was finding an oncologist in whom I had faith, and who is interested in reading the literature, not just the guidelines. I'm sure Dr. Sweeney would have been an excellent choice, but I went with familiarity.

              Don't worry Dave, I'm not checking the other boy very often, and after 2x7AUC carbo, a contralateral relapse is so implausible I really don't worry about it. I'm also a science guy, but coming from an epidemiologic training perspective, we tend think a 2-5% risk of something is pretty high (which makes sense from a public health perspective), but isn't really putting my mind at lease about retroperitoneal relapse. I know rationally that as a personal risk, 2-5% is essentially ignorable, but my training keeps be from interpreting it rationally! That, and from time to time, by d20 has come up '1'.
              It's interesting, reminds me of the latest 538 podcast, where they talk at length about how even statisticians and experts of various stripes who should know better have a really tough time putting percentages into real life context...
              I don't think you're unusual at all in "believing the numbers" - from what I've read, the great majority of TC survivors have a pretty reasonable interpretation of their relapse risk as low - I suspect that there's some selection bias in who comes asking questions on a forum though LOL! Glad you're here to keep things real.
              Painless lump 5/18/2017
              Orchidectomy June 2017 (4.5cm, rete testis involvement)
              Chemo Summer 2017 (2x7AUC carboplatin)
              No evidence of relapse since, but plenty of anxiety about it.

              I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.