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Another Dancer in the Ballroom...

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  • Another Dancer in the Ballroom...

    Hi!

    Well, the first thing I have to say is 37 days - 37 days from first feeling something wrong to walking into the theatre to have both my testicles removed. So thankful for the NHS that are treating me but, boy, my head is spinning...!

    I've put my details in the profile but the longer story is that I was born with undescended testes - or at least I had to have an operation to correct this when I was 12 years old. Fast forward 25 years or so and I was advised to have a series of ultrasounds to check me out. They found some microlithiaisis/calcifications but they were stable so after a few years I was discharged to keep an eye out for myself - the bigger issue was that my previous problems had left me aspermic.

    A couple of days prior to Christmas I woke up and had a scratch as you do but something was wrong - my right testicle felt hard like a rubber ball rather than soft as they usually did . I checked again throughout the day and when nothing had changed the next morning I decided I wasn't going to let this drift over Christmas - I contacted my GP and after a telephone consultation was in the surgery that afternoon being checked and referred for an ultrasound scan.

    The scan took a couple of weeks to arrange but in the meanwhile received a reassuring call from the Urologist to say it was unlikely at my age (52) to be serious although given my history it was important to see it through.

    The scan was on a Thursday so when I didn't hear anything on the Friday I thought I was out of the woods.On the Sunday though I received the call I was least expecting from the Urologist; yes they had found something - on both sides! And the recommended process was removal.In the meanwhile I had to have a blood test and a CT scan.

    I was, of course, terrified, but much calmer once I was told that the blood tests and CT scans indicate that nothing had yet spread. The onward path was set, though, and my main concern was now that this was the last chance saloon for any miracle discovery of the hidden viable sperm. I knew this was unlikely but I still needed to know for sure. Arrangements were made for a sperm test (still negative) and for the testes to be examined upon removal (also, alas, negative)

    It is now 11 days since I had both my testicles removed - I believe the operation went well but stayed in overnight (definitely required - my legs were fine, my arms were fine but there was no way I was able to go home with what lay in between). On the Saturday I had an injection of Sustenon but now have to work out the way forward with the Testosterone Replacement I need. I'm not encouraged that my arm still hurts but I'll take this to another part of the forum. They were only able to fit one prosthesis for the time being (my previous operation when I was 12 meant there was more scarring than usual) and the dilemma for me as the healing continues is that what they did put in feels hard like a rubber ball significantly larger than what was there before. Small stuff though if I have managed to escape with the cancer removed...


  • #2
    Welcome to the site, though I'm sorry you had to come. I also had stellar service from the NHS. Got my fingers crossed for you buddy, hoping they got it all during the surgery!!! Wishing you a speedy recovery

    Peace and love

    deekz

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    • #3
      Thanks for the welcome - further update today

      The tests indicate Stage One Seminoma on both sides (thanks to this site I knew what I was asking for) so quite promising at avoiding spread I understand. Next steps are a second dose of Sustenon next Friday (I want to stabilise before I consider Nebido) and a referral to Oncology at Barts to determine whether to have a precautionary bout of chemo - more reading up...
      Last edited by Edamole UK; 02-11-21, 07:05 PM. Reason: Corrected Nebilo to Nebido

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      • #4
        Sorry to hear that you had the undergo all of this, especially given the rarity of being affected bilaterally. So glad to hear that you caught it early. Once they get your testo sorted, things will level out a bit and hopefully get back to the new normal. A great TC team at Barts so I know you are in great hands.

        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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        • #5
          Thanks Mike! Yes, 'new normal' is a phrase I have been repeating the last few weeks. I suppose it still hasn't hit home yet especially given the feeling that if the tests are correct I have 'gotten off lightly' and the accompanying sense of almost survivor guilt (while telling myself that the tests could still be wrong and not to build my hopes up yet).

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          • #6
            There is no need for survivor's guilt just because you had no spread, I believe the majority of TC cases end that way, plus you lost both at once. I, at least, had 35 years with just one before losing #2. You will get the testosterone sorted out, but it make take a bit of time to get it right. Hang in there.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

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            • #7
              Thanks for your comments Dave - been lurking but adjusting to life

              So, as an update I've now been referred to Barts and had a very productive consultation during the week - given my previous results we are going to monitor by means of Blood Tests and MRI Scans (MRI being safer than the CT scans) Had a Blood Test and it's come back clear!!!

              I've also had a peak/trough testosterone test around my last Sustanon injection - Friday 6nmol/l, Monday >52nmol/l. So I understand the 6 is too low and the >52 also low for just having had the jab (although how much higher it is remains to be seen). Next one due on Friday but having Thursday due to Good Friday.

              Thanks again!.

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              • #8
                OK, so I've had my follow-up blood tests and an MRI Scan after 3 months and I've come back all clear!

                A fantastic relief and I could see the happiness in the consultant's face as he told me - I know I have not got off unscathed and still need to keep an eye on things in the future but I'm happy with what I have for now.

                Thoughts with you all still going through this - wishing you all the good care and fortune I have had...

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                • #9
                  Good to hear the all clear, here's hoping for many more.
                  Jan, 1975: Right I/O, followed by RPLND
                  Dec, 2009: Left I/O, followed by 3xBEP

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