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  • Post Orchiectomy and Follow up

    It has been a whirlwind of a month for me. About two weeks ago I had an ultrasound. I got a call from my doctor that same day telling me they suspected a germ cell tumor on my testicle. I went to the urologist and they immediately schedule my surgery for the following Monday. It has been almost two weeks now and I have my follow appointment with my urologist. All of my blood work results came back and everything looked good, but I had my CT scan just this week and will find out more at my follow up tomorrow. I have been an absolute nervous wreck all week and have been having some lower back issues now that are making me extremely paranoid.

    Any advice/words of encouragement would be appreciated. I am 29 years old and like I said, its been quite a lot to deal with over the last few weeks. Everything has moved so quick and Ive been super anxious. Havent had time to process much of anything!

  • #2
    Hello KG! Sorry to welcome you to the club...
    I know how stressful it can be, it was quite a shock for me as well to learn I had cancer. The good news is that testicular cancer is essentially curable, and it sounds like you're getting all the right things done.

    I also had a lot of worry in the first stages, and I did some things that made it worse, not better, so I'm hoping to help you take a different path! I isolated myself and spent a lot of time in bed - a lot - so much that I lost a decent amount of muscle strength. Not a good idea! And the other thing is that I had a lot of trouble figuring out that I was having anxiety, and none of the doctors seemed to understand it either - not the surgeon, or the oncologist, or my primary care provider - all lovely caring people, but completely blind to the presence and consequences of anxiety. And then when I went to a shrink, she thought it was "chemo brain" and gave me stimulants which made my anxiety much worse. Eventually we figured it out and got me on an antidepressant with antianxiety benefits, and things are back to normal now. So, the point of all this is that I took some wrong turns along the way, and I'm hoping to help you find an easier path - because testicular cancer really isn't terrible news for the great majority of men, and your blood work sounds like you're in that great majority.

    It can be really helpful to talk to people IRL, not just doctors, but family and friends, even coworkers. We're eager to see you through this here on-line, but there's nothing like talking stuff through face to face. Nut cancer is nothing to be ashamed of, and you'll find that most people are sympathetic and eager to hear you out (and the few that aren't - good to learn that and move on).

    Another thing that helps a lot with the anxiety is exercise. There are some great studies showing that men who have had testicular cancer and anxiety about it do much better with exercise. I myself use the rowing machine because it's what I'm used to, but it can be any kind of exercise - running, swimming, even weight lifting.

    The back pain - could be a lot of things - probably not cancer. :-)

    Eager to hear how your CT and stuff comes out, please let us know how things are going for you!
    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.

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    • #3
      Hello KG, you should update your status with full blood, pathology and CT results, then we can give you some decent prospective on the basis of our experience. TC is nasty thing, but you still have 99% of chance to live up to 120 years, it's is mostly upon you how will you live it.
      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
      Waiting...

      Comment


      • #4
        Originally posted by billandtuna View Post
        Hello KG! Sorry to welcome you to the club...
        I know how stressful it can be, it was quite a shock for me as well to learn I had cancer. The good news is that testicular cancer is essentially curable, and it sounds like you're getting all the right things done.

        I also had a lot of worry in the first stages, and I did some things that made it worse, not better, so I'm hoping to help you take a different path! I isolated myself and spent a lot of time in bed - a lot - so much that I lost a decent amount of muscle strength. Not a good idea! And the other thing is that I had a lot of trouble figuring out that I was having anxiety, and none of the doctors seemed to understand it either - not the surgeon, or the oncologist, or my primary care provider - all lovely caring people, but completely blind to the presence and consequences of anxiety. And then when I went to a shrink, she thought it was "chemo brain" and gave me stimulants which made my anxiety much worse. Eventually we figured it out and got me on an antidepressant with antianxiety benefits, and things are back to normal now. So, the point of all this is that I took some wrong turns along the way, and I'm hoping to help you find an easier path - because testicular cancer really isn't terrible news for the great majority of men, and your blood work sounds like you're in that great majority.

        It can be really helpful to talk to people IRL, not just doctors, but family and friends, even coworkers. We're eager to see you through this here on-line, but there's nothing like talking stuff through face to face. Nut cancer is nothing to be ashamed of, and you'll find that most people are sympathetic and eager to hear you out (and the few that aren't - good to learn that and move on).

        Another thing that helps a lot with the anxiety is exercise. There are some great studies showing that men who have had testicular cancer and anxiety about it do much better with exercise. I myself use the rowing machine because it's what I'm used to, but it can be any kind of exercise - running, swimming, even weight lifting.

        The back pain - could be a lot of things - probably not cancer. :-)

        Eager to hear how your CT and stuff comes out, please let us know how things are going for you!
        Appreciate all the support. Really helps hearing this type of stuff from those who have gone through it before. I've actually handled the news about as well as I think I could. I've tried to stay positive and pretty much continue my daily routine (other than playing sports for the time being as I recover). My biggest issue is I just have those random moments where I let my head get away from me. I've gone to a therapist for other things in the past and really do think your suggestion of possibly going again would be extremely helpful. It's nice to just have someone to vent to that isn't directly impacted by the situation.

        Comment


        • #5
          Hi all -
          An update!

          Had my follow up visit yesterday. Bloodwork came back good (I’ll post results when I’m at my computer) and the CT scan results came back positive as well. All looks good! Tests on the tumor itself did show that it was a seminoma and doctor said it looks to be Stage 1B. I have an additional appointment sometime in January to decide next steps with my doctor and a team of other physicians (oncology), but it seems that the most preferred route in my situation is surveillance. Any thoughts on this?

          Comment


          • #6
            So far so good, minus the cancer part of course, but it sounds like you caught the seminoma early and surveillance is certainly an option as long as you will be compliant with all of the check ups. It can be a difficult decision to make with the options for stage I disease but there is no real "bad" decision, minus maybe receiving radiation therapy as the least advisable. Besides active surveillance, there is the options for a dose or two of carboplatin and depending where you are located the option of RPLND via a clinical trial https://clinicaltrials.gov/ct2/show/NCT02537548 The decision is in many senses what is the best thing for you on a personal/personality level and your life situations (i.e. if you are trying to start a family at the moment, then perhaps carboplatin isn't the best up front)

            Do keep in mind that things can be much tougher mentally than physically with TC and if you have had any difficulties with anxiety, for example, in the past, then they can exacerbate with the diagnosis, so I would have a low threshold in talking professionally to someone if needed.

            Mike
            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
            Surveillance...
            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 mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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