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  • #16
    Originally posted by usnw0911 View Post
    I don't know what his post marker are because they were at the ER and I haven't been able to get the records. But I do know his post markers all went down according to the urologist. I do have some lab work which is from a week and half after surgery, but I know without the before its not full information.
    AFP was 2.3
    LDH was 158
    HCG was <1.0

    I do have the biopsy report. I don't under really much of anything. At the first it happened so fast, and I wasn't at the ER with him because we have a 3 year old I had to watch caused they don't do well sitting in as ER all day. And I know I should have been better but we really were in shock until after the surgery happened. I can try and call the urologist and see if they can tell me the before lab, other than that it would be my husband would have to get the results. But here is what was on the biopsy results, if it helps any.

    Malignant mixed germ cell tumor 3.3cm consisting of embryonal carcinoma %80 and teratoma %20. The tumor is organ confined. Spermatic cord margin is negative for tumor. No lymphovascular invasion identified. Background germ cell, cell neoplasia in situ identified. See note
    Note - Submitted immunohistochemical stains demostrate the following results. The embryonal component is positive for PLAP and CD30, and LMWCK(focal). The teratoma is positive for EMA and LMWCK, and the germ cell neoplasia in situ is positive for PLAP, and CD117. Inhibin. HCG and GFAP stains are non-contributory

    Without lymphovascular invasion, he is stage 1A, not stage 1B. With predominant embryonal, he has a relapse rate of approx 30%. This is even more reason not to do 2 x BEP. Most doctors would recommend surveillance for this case.
    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

    7/1/2015: felt tiny lump on side of R testicle
    7/30/2015: Ultrasound shows 2 intra-testicular masses.
    7/31/2015: tumor markers normal, CXR clear
    8/5/2015: R orchiectomy
    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
    8/14/2015: CT abdomen/pelvis clear, Stage 1b
    8/24/2015: started 1 x BEP

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    • #17
      I understand what you're going through. Its so overwhelming and scary, and you just want to be able to trust the doctors and move on. But this being a rare cancer, there not a lot of oncologists that have experience with and It is so important to get the right treatment.

      Everyone on here is telling you the exact right thing! These are very kind, intelligent, knowledgeable, and experienced people that really know their stuff, so I would strongly encourage you to take their advice and get a second option and/or email Dr. Einhorn. He will respond and confirm what everyone on her has said so far- surveillance or 1XBEP.

      You do NOT want him over exposed to chemo. It is toxic and nasty and will cause more problems then it solves if it is not used right.

      Lastly, keep in mind that he has a nearly 100% chance of cure at this stage and this will all be over soon!
      2/7/18- Husband diagnosed
      2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
      3/12/18-4/1/18 Adjuvant BEPx1

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      • #18
        Thank you all for your responses. I have looked at all the information you have given me and I understand that if anything the BEPx1 would be the better choice if anything. I know my husband wants to do anything he can to lower his relapse percent. We were told it was at %50, but even if it is only the %30 I know he wants to make it as low as he can at this moment. I have talked to him about all I have found out and unfortunately he trust the doctor completely and wants to do what has already been recommended. I don't want to try and push him because its his body and his choice. I do plan on asking the doctor at our next appointment why he wants to do x2. That appointment isn't until the 8th of August so I might try to gather up more information and talk to my husband some more. Maybe ask if he could just ask for a second opinion just to see. I don't know.
        It is such a thing I wish we could just take a treatment and move on. I understand that it is curable and treatable, I'm not worried of that, I just want him to have to best treatment and recovery. It doesn't help that half our family acts like we told them he is stage 4 with just months to live and the other half is giving us wonderful medical advice like eat more avocado and asparagus, or its such a shame he is military and can't get medical weed
        But thank you all for trying so hard to help
        Marion

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