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  • New guy here

    Hello all,
    I just joined the forum group today after finding the site a few days ago. I wanted to start with a quick intro, I am a 38 years old, married and a father of two boys. On October 8, 2019 I found a marble size hard mass on my left testicle. I saw my primary on 10-10-2019 and also had an ultrasound that day. The ultrasound results revealed a mass on the left testicle along with masses within the testicle. The words “concerning for cancer” showed up in the report. My initial blood markers were within normal limits After some frustration with my local providers I decided to seek consult at Froedtert in Milwaukee, WI.
    At Froedtert I had a consult with a Urology PA and was sent for a CT. The initial CT was clear and I was referred to the cancer center and met with a Urologic oncologist. He confirmed all the results and scheduled me for a left side I/O the next day. Surgery went well and the preliminary biopsy of the hard mass was seminoma. I am currently 6 days from surgery and feeling good. I have my post surgery follow up this afternoon and will receive the final results of the biopsy of the hard mass and the secondary masses within the teste.

    I am glad I found this group and have learned so much already. Thank you all for sharing so much already. I will update with the official diagnosis after my appointment.

    Cory

    Sorry that was not so quick.

  • #2
    Welcome aboard Cory!
    Good luck with your appointment today & let us know if we can help you sort anything out. It can be a confusing time with lots of information and decisions to be made.
    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.

    Comment


    • #3
      Hi Cory,

      I'm new here as well. My name is Joe, 35yo. Just joined yesterday. I had my operation Sept 30th. Results were:

      Stage 1S Non-Seminoma
      30% Embryonal carcinoma
      40% Yolk sac tumor, postpubertal type
      30% Teratoma
      Lymphovascular invasion present

      I just met with the ocologist this week. He gave me the option of surveillance or 1 round of BEP chemo. I was told chances of reoccurrence with my risk factors is 20% w/o chemo and 5% with chemo. I prefer not to intentionally put poison in my body, but curious as to what other people think and experience.

      Best,
      Joe

      Comment


      • #4
        Originally posted by JoeG23 View Post
        Hi Cory,

        I'm new here as well. My name is Joe, 35yo. Just joined yesterday. I had my operation Sept 30th. Results were:

        Stage 1S Non-Seminoma
        30% Embryonal carcinoma
        40% Yolk sac tumor, postpubertal type
        30% Teratoma
        Lymphovascular invasion present

        I just met with the ocologist this week. He gave me the option of surveillance or 1 round of BEP chemo. I was told chances of reoccurrence with my risk factors is 20% w/o chemo and 5% with chemo. I prefer not to intentionally put poison in my body, but curious as to what other people think and experience.

        Best,
        Joe

        Hey Joe,

        Stage 1S was a typo and you meant 1B, right? Because with 1S (markers not falling into normal range), 3xBEP is the only option.
        I'm also not so sure about your chances of reocurrence. The numbers I read in numerous articles were about 50% without chemo and about 3% after 1xBEP.

        Comment


        • #5
          Hi Joe!
          Sorry to welcome you aboard, but welcome aboard!

          My short answer is that they are both good options, and with either option, the forecast for a long life ahead with no major problems is excellent.

          Having said that, there's no harm in asking for a second opinion. Your first oncologist will appreciate the fact that you are taking charge in your care, and the second will give you reassurance about what options lie ahead of you and an additional perspective about what to expect.
          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.

          Comment


          • #6
            Hi Joe,

            Sorry to welcome you aboard, but welcome aboard!

            My short answer is that you have two good options in front of you, both very very likely to result in a long life without further complications. I know both of us would rather not have cancer in the first place, but now that we're in that boat, both surveillance and chemo are excellent options, with low risks of side effects, and an absolutely excellent prognosis.

            I myself went with chemo (2x carbo), because I was more scared of the risk of recurrence than I was of the risk of a second malignancy due to chemo, but it's a very individualized decision to make. If I knew then what I know now, I probably would have gone with surveillance. But I don't regret the decision for a second, and it's worked out well for me.

            Having said that, it's always a good idea to seek a second opinion about cancer management. Your first oncologist will appreciate your effort to understand more about your condition and become a more informed patient (and if they don't, well, that's a problem!) And the second will give you reassurance about what your options are, and an additional perspective on them.

            You have time. Make a decision you're confident about.

            And again, welcome aboard!
            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.

            Comment


            • #7
              no typo, It is 1S. My AFP tumor marker pre-op was 221. Just had another blood work about a month after surgery and levels reduced to 13.9 ng/ml. I'll have another blood work in 2 weeks to see if it lowers to normal range of 0.0-9.0 ng/ml

              The oncologist is using the NCCN guidelines. He printed out a page for me (Test-7) There is:
              Stage 1 w/o risk factors
              Stage 1 with risk factors
              Stage 1S - Persistent marker elevation - See primary treatment (Test - 11)

              Do you think he used the wrong table to recommend treatment? Should he have used the table on Test - 11?

              He referred to the Stage 1 with risk factors on page Test - 7 to recommend treatment. My risk factor is the presence of lymphovascular invasion. He said I had 3 options:
              1. Surveillance
              2. 1xBEP
              3. RPLND.

              He urged not to do RPLND, but said I couldn't go wrong with either the other two options. He leaned going with 1xBEP as it would reduce the chances of reoccurance from 20% to 5%.


              Why do you say 3xBEP is my only option? What do you think is the best path forward? I really don't like the option of chemo, especially if there is a chance that it won't be necessary.

              Thanks for your input

              Comment


              • #8
                Thank you Bill!! I'll reach out for a second opinion

                Comment


                • #9
                  Originally posted by JoeG23 View Post
                  no typo, It is 1S. My AFP tumor marker pre-op was 221. Just had another blood work about a month after surgery and levels reduced to 13.9 ng/ml. I'll have another blood work in 2 weeks to see if it lowers to normal range of 0.0-9.0 ng/ml
                  AFP should halve every 5 days. By the book, 221 to 13.9 should take about 20 days. I doubt that these additional ~10 days are enough to confirm 1S. It's good that there is another blood work scheduled. If AFP drops to normal range, you will be 1B, if it's stable, another blood work will be taken. If it' rising without visible metastasis on CT/MRI, then you'll be 1S.

                  The oncologist is using the NCCN guidelines.
                  That's good!

                  He referred to the Stage 1 with risk factors on page Test - 7 to recommend treatment. My risk factor is the presence of lymphovascular invasion. He said I had 3 options:
                  1. Surveillance
                  2. 1xBEP
                  3. RPLND.
                  That's correct when your stage is 1B.

                  He urged not to do RPLND, but said I couldn't go wrong with either the other two options. He leaned going with 1xBEP as it would reduce the chances of reoccurance from 20% to 5%.
                  Did he tell you where he's got his numbers from? I've read quite a lot studies and articles about 1B a year ago and the numbers were 50% and about 3% with 1xBEP in Stage 1B.

                  Why do you say 3xBEP is my only option? What do you think is the best path forward? I really don't like the option of chemo, especially if there is a chance that it won't be necessary.
                  I don't know so much about Stage 1S, but I'm pretty sure that Surveillance will get you nothing but 3xBEP in the end, because persistently rising markers mean tumor growth.

                  Anyway, your chances are very good! I'd get a second opinion from a TC expert and read one or two articles.

                  Disclaimer: I'm not a doctor, just had my 1B-diagnosis with 1xBEP 2,5 years ago. I've read pretty much everything about that on pubmed.

                  Comment


                  • #10
                    Derjayger, thank you very much for your response. This helps me feel more comfortable about making a decision. I'll get a second opinion and hopefully my AFP levels will continue to go down

                    Comment

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