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  • Just joined the club

    Good morning. Sept 19, I was one vacation in Pensacola FL and my right testicle was hard and enlarged. I had no pain or discomfort, it merely caught my attention in the shower because it was heavy. I went to sleep that night, woke up and it was still the same, so I went to the Navy Hospital and was seen by the Urologist there. US confirmed a large mass and he wanted to do an Orchiectomy the next day. I opted to drive home to Atlanta GA and see another Urologist for a second opinion, plus I would rather have this surgery near home. The second urologist said the same exact thing, so on Sep 21, I had an orchiectomy on my right testicle. Pre-orchiectomy all my CT scans were normal. My tumor markers were normal except for the AFP. AFP was 855.5. Pathology revealed that the tumor had Yolk Sac tumor 50%, teratoma 30%, seminoma 15% and embryonal carcinoma 5%. It also revealed that there was no tumor anywhere else outside the testicle. Epedidymis and hilarious soft tissues were negative for tumor, tunica vaginalis was negative for tumor.

    So yesterday I was diagnosed with non-seminoma stage 1s testicle cancer. The urologist said that we need to check the tumor markers of AFP at the end of Oct to ensure it is going down. He explained that AFP has a half life of 5-7 days. So I am guessing he has a certain number he is looking for when I go back and get my blood drawn again. If he likes what he sees, he is suggesting surveillance/observation. If the markers are still high, then I think the obvious outcome will be chemo. Obviously, I am hoping for great news! But I wanted to share what I have going on, since I have used this forum to gain so much knowledge on the subject and wanted to pass along my experience. Thank you for the support!

    Pre-orchiectomy:
    pT1b: tumor mass measured 4.5cm x 3.5cm
    S1: AFP 855.5 (AFP< 1,000)

    Diagnosed: NSGCT stage 1S

    White/Caucasian
    Age: 37(I turn 38 tomorrow)
    Profession: Airline Pilot/Navy Pilot

  • #2
    You are true soldier,no fear in your post.Keep up,I lost both of them but life is going on.
    Good luck.
    .

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    • #3
      I think your diagnosis should be stage 1, not 1s, since you didn’t mention post- orchiectomy the level of tumor markers. Am I right?

      Amy

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      • #4
        Yes that is correct. He said absent of the information he wanted to start out on the side of caution. So if my tumor markers come down, then yes it would be just stage 1... which is obviously what I’m hoping for. I think in my mind planning for worse hoping for the best! I won’t know about tumor markers until the end of the month.

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        • #5
          Thanks for your clarification. I think after orchiectomy very often people take blood test in week later to see the trend, but it isn’t must. I hope your AFP comes to normal, and you won’t suffer more!

          Amy ,Ryan’s mumm

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          • #6
            Best of luck! Did your pathology show lymphovascular invasion?
            Age 31 - Portland, OR
            01NOV16- Pain in right testicle, palpable mass
            13NOV16- R I/O. Markers normal
            27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
            06DEC16 - CT scan clear
            09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
            03JAN17- Ended 1xBEP; start surveillance
            18MAR17-2nd pathology report shows 90% EC , 10% seminoma

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            • #7
              I appreciate that. The report says that Tumor involves the stroma of the rete testis and no definitive lymphovascular invasion is seen.

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              • #8
                I would ask for a marker test now, it's been about two weeks since surgery & AFP should be in a normal range by now (855/2=428, 428/2=216). Most labs, anything under 300 is nothing to worry about. Also, there is absolutely no way I'd do chemo based on AFP alone. It is not a proper tumor marker, it is a marker of on inflammation & can be elevated due to many causes. Only with a scan showing spread would make me take chemo in your position.

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

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                • #9
                  I discussed this with both surgeon and oncologist separately. They both agreed that waiting would be fine. Although the oncologist seemed a little hesitant. Almost like she wanted to pull her own labs. But then just decided to wait. I would have liked to pull them now as well. I may put in a call to see if we can do it earlier.

                  Also, once I get all the data, I plan on sending an email to Dr. Einhorn with my data to see what he thinks.

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                  • #10
                    I can't see any advantage to waiting, why not find out sooner? Blood tests are easy & inexpensive & the results will be as meaningful now as they will be later. JMHO.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

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                    • #11
                      Yea I am going to call and see if I can get them sooner. Appreciate the input!

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