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  • Malignant leydig, need guidance

    Hi folks. My first post. Any guidance on my malignant leydig situation is much appreciated since there are not many of us out there.

    2017/02/21: Left testicle orchiectomy 1 day after first doctor visit.
    2017/03/24: RPLND by Dr Sheinfeld at Sloan Kettering. All lymph nodes removed were “clean”.
    2017/07/06: 1st CT scan after RPLND shows a new 8 mm mass in the lungs.

    I had been told during RPLND time that there is a chance it may skip lymph nodes and go straight to lungs. That is why I am trying to act fast.

    There is no guidance yet on what to do about that mass. I will start trying some oncologists this week where I live (Arizona) so I can have a local person to kind of coordinate through. If you happen to know a relevant doctor in Arizona, please comment or message.

    The only doctor who saw that last scan so far said it may be the malignant leydig, it may be fungus, it may be anything. He also said biopsy is not possible due to where it is in the lung and due to risk of puncturing. He suggested “cutting it out” or waiting 2 months and if it grows even a little bit “definitely cutting it out”.

    A urologist/oncologist in our family overseas (who didn’t see the scans yet) told me on the phone that he agreed that it may be anything but also not to wait for anything. And he asked me why the doctor in the US did not consider a PET scan (which apparently should define what the mass is a little more clearly?). Another friend of mine in the US speculated that PET scans are expensive, possibly not covered by most insurances, therefore not being on most doctors’ radar screens in the US as an option? Do you have any experience with PET scans?

    Or if there is anybody out there who had a lung situation, any alternate next step suggestion may be useful. Or any guidance on malignant leydig really.

    Thanks.

  • #2
    When they discovered this new 8 mm nodule was it on a dedicated chest CT or are they seeing it at the base of the lungs from an abdominal CT? Either way, did you have a previous chest CT?

    The other question would be have you reached out to MSK to get their advice?

    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

    Comment


    • #3
      OC-TC~ Oh no!!! Hoping someone can chime in with experience. As Mike asks, what do the doctors at Sloan-Kettering think?
      17 year old Grant dx 12/21/16
      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
      pre/o CT Scan 12/22/16 normal
      r/o 12/22/16
      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
      BEP x 3 1/27/17
      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
      Post Chemo RPLND 5/8/17: pathlogy Teratoma , 3 large masses removed

      Comment


      • #4
        Hi Mike. It is a dedicated chest CT. It was done in Cancer Treatment Centers of America in Illinois. No particular reason to have it done there. I happened to be there. It says "Lungs: A new 8 mm nodule has developed in the right lower lobe abutting the major fissure. Previously described 2 mm subpleural thickening right upper lobe is stable".

        There was a previous dedicated chest CT also from 112 days earlier (Done at Sloan Kettering). That one says "A few punctate subpleural pleuralnodules are nonspecific for example 0.3 cm right middle lobe, probably benign however attention on follow-up imaging".

        The doctor who commented on the last scan said "There are a few 2-3 mm ones that are the same on the previous and last scan" and he was not concerned about those. The only difference was apparently this new 8 mm one.

        I did overnight last Wednesday the last CT scan CD to Sloan Kettering but them having to move it up and down the chain, I thought a week saved is a week saved to wrap my head around it. I will definitely take whatever they say seriously though. Thanks.





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        • #5
          I should probably add at this point that I had zero chemo or radiation done to date because many people probably won't know those 2 methods are said to be not very effective for this type.

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          • #6
            Well, the dedicated chest CT is good to have had vs. just incidental findings on an abdominal CT. Perhaps you could call up to MSK and se if they could expedite looking at the CT scan for advice. Just to make sure "things aren't lost."

            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

            Comment

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