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Husband w/ recurrent TC after 16 years

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  • Husband w/ recurrent TC after 16 years

    My husband was diagnosed with non-seminoma mixed germ cell TC 16 years ago....1-2 enlarged lymph nodes and elevated AFP. He was treated with right I/O and 3-4 rounds BEP chemotherapy. In complete remission for the past 16 years with normal check ups and no issues. We had been going through some infertility appointments when the doctor there noted an abnormality on his remaining testicle. He was quickly diagnosed with "recurrent" testicular cancer...confirmed w/ ultrasound. He had a slightly elevated HCG of 1.4 before surgery and a "normal" CT scan of abdomen and pelvis. Left I/O completed last month. He had 2 prosthetics placed at that time. He has recovered well from surgery and adjusted fairly well to testosterone gel (which he was really nervous about). Pathology of this TC came back as pure seminoma. He is one of the UNLUCKY few to get a totally new cancer in the remaining testicle. Ugh, this is NOT FAIR and it makes me SO MAD!!!!

    He had his first follow up appt recently and they repeated blood work. His T level came back around 420 (which is where he was before surgery). His HCG came back slightly higher at 3.3. Totally unexpected, as we were all pretty convinced with the initial minimal elevation of HCG that surgery would hopefully be the only necessary treatment. We are currently in a few weeks of watching and waiting......as my husband's LH (luteinizing hormone) was also elevated at like 22......apparently LH can sometimes cross-react with the HCG test and cause a potential false positive result. They want to increase his testosterone dose and repeat blood work in 2 weeks. Basically they are hoping that his T will increase which will cause the LH to decrease. If this happens, the HCG should also decrease if it is falsely elevated....if not, then it is definitely cancer related and he will require chemotherapy. Has anyone else heard of this or run into this problem?

    We are obviously DESPERATELY hoping that these adjustments will show that this is a false elevation and that chemotherapy will not be needed. He is absolutely terrified about the possibility of having to go through chemotherapy again....and to be honest, I aam too. I feel like he still has long lasting mild cognitive and neuropathy issues from the first time around. Also worried about Bleomycin.....not even sure that they would allow him to receive this again because it is so tough on your body and lungs? We haven't met with an actual medical oncologist yet, so we don't know what the actual recommendations would be. They are waiting to see the next set of labs before making any further moves. This waiting is also killing me....the longer we wait, the longer this cancer has to spread!

  • #2
    Welcome and I am sorry that this has happened! It is rare you're right but there are a few active members on here that have had both testicles out and I hope they can give more advise. I'm not sure if it's described as a recurrent or not, I always thought that was if it's the same cancer as previous, however this is an entirely new cancer by the sounds of it.

    I mean that HCG doesn't sound that high really, so i'm hoping that it isn't a problem and he doesn't require chemo, and I hope that's what the outcome is for your husband. Keep us posted!
    24 year old diagnosed 6/11/16
    Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
    Pre/o CT Clear
    Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
    Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
    Post-op CT with one enlarged lymph node - 1.5x1cm
    Borderline stage 2B/3B
    BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
    CT and markers clear - in remission - 28/2/16

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    • #3
      Hi TCw,
      Really sorry to read this, but there are a few of us on here that are testicle-"free". I've been on gels for the last seven years and really pleased with how they work for me - I am sure your other-half will do well on them. Sorry I can't help with the markers, not something I have experience of (neither of my TCs presented any). But someone will come in with some additional info (there are a lot of clever, and experienced, folks on this forum).

      If you/your man want any additional info about life-without-nuts then feel free to post a message, or PM me, if that is more comfortable.

      Take care, DZ.

      Jan 2009: RHS (Seminoma) & RT
      Mar 2010: LHS (Embryonal Carcinoma)
      Sep 2010: Relapse & 3 x BEP
      Mar 2015: Five years "nut free"
      http://doublezeroami.blogspot.com

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      • #4
        Nish, Yes we keep referring to it as 'recurrent' because it is testicular cancer again, but realize it's a different type so it's not technically considered recurrent....


        DZ, Yes he seems to be doing well on the gel. It was almost like the idea of being dependent on the gels was worse than the actual reality of it. Hoping that same thought plays out in many other circumstances related to this (i.e. chemo!).

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        • #5
          First things first: even if it was the same tumor type as # 1, it is not "recurrent" TC does not spread from one testicle to the other. Every guy who had one TC is, however, somewhat more likely to get a second one. They seem to just recently be uncovering a strong genetic component to susceptibility to getting TC.

          Second, here is what the Testicular Cancer Resource Center dictionary ( http://tcrc.acor.org/dictionary.html#GlossH ) says about hcg:

          Human Chorionic Gonadotropin (hCG), beta subunit - In adults, significant elevation of levels of beta HCG occurs only during pregnancy and in patients with trophoblastic neoplasms or nonseminomatous germ cell tumors. As a result, it is used as a tumor marker. Essentially, 100 per cent of patients with trophoblastic tumors and 40-60 per cent of patients with nonseminomatous germ cell tumors, including all patients with choriocarcinoma, 80% of patients with embryonal carcinoma, and 10-25% of patients with pure seminoma are diagnosed with elevated levels of beta HCG. The serum half life of beta hCG is 24 to 36 hours, which implies that elevated concentrations should return to normal within 5 to 7.5 days after surgery if all tumor is removed. Please note that the normal HCG level is usually less than 5 miu/ml. Also note that the HCG level can become elevated (falsely positive) due to abnormally low levels of testosterone or because of marijuana use.
          So his hcg is definitely NOT high enough to consider further treatment at this time. Surely, it needs watching to see if a upward trend is developing, but I don't believe any of the experts would recommend further treatment unless it goes quite a bit higher.

          Third: Try not to worry about minor delays, they will not affect the outcome of treatment (if needed) & some delay may show no further treatment is needed. While waiting is often difficult, it is also sometimes the best course of "action". You don't want him getting treatment that is not needed, after all.

          Dave
          Last edited by Davepet; 03-28-17, 03:28 AM.
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

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