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Sertoli cell tumor ~ looking for resources/experiences

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  • Sertoli cell tumor ~ looking for resources/experiences

    All,

    I had a right IO on Tuesday and the lab results came back to the doc today. (I don't have a copy of the report yet, but should within a week.) He told me that the tumor was a sertoli cell tumor. I was also told that, although it's benign in about 90% of cases, there's no way to know for sure. If it doesn't spread, it's benign; if it spreads, it's not.

    The tumor was very small (5mm) and he said it came out cleanly and that there was no interaction with the surrounding tissue. Also, there were no pre cancerous cells found in the removed tissue. For these reasons, he's pretty optimistic, but I've got some blood work, a CAT scan, and a chest x-ray sched for next week.

    Given his description and the statistics, I'm not overly worried that anything has spread. On the other hand, I want to educate myself, since I'm told that this sort of cancer does not carry a good prognosis at all. I'm finding very little information online about sertoli cells tumors in men, , about numbers, studies, possible treatments, or any related info. I can't even find the a statistic for how many of these tumors are identified. Treatment recommendations seem to indicate surveillance, but don't say what happens next.

    Can anyone point me to any good information? Is there anyone out there who has had a similar diagnosis that can talk about their experiences? Thanks all!
    Cheers,

    Matt

  • #2
    The little I know is that it is extremely rare and the vast majority of times benign. In my 5+ years here I have only seen one or two cases.
    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
    11.22.06 -Dx the day before Thanksgiving
    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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    • #3
      I'm sort of amazed at how rare they are. I found a few stats last night. According to one 2008 urology text, there's been 54 cases of malignancy in 'the available literature.' True, that was in 2008, but if you take that malignancies make up about 10% of these, that means at the time there were less that 500 benign ones documented. I'm starting to feel like I should get a prize or something...

      Anyhow, thank you for the response and the reassurance. If you know of any posts relating to these, feel free to point them out.
      Cheers,

      Matt

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      • #4
        I had a Leydig cell tumor, a close cousin to Sertoli tumors. Sertoli tumors are about 1% of all testicular masses.

        It's great news that your tumor was very small, I would not worry that it has spread.

        Signs of malignancy are: a large tumor size (above 5 cm), irregular margin of tumor, invasion to adjacent tissue, lymphatic or vascular invasion, and high mitotic figure.
        Source:
        http://synapse.koreamed.org/Synapse/...kju-50-300.pdf

        If your pathology reports no signs of malignancy and your scans are clear (which I suspect they will be), I would accept this as an all-clear. It's vastly unlikely to come back. Treatment for a malignant Sertoli tumor is similar to malignant Leydig tumors, ie. RPLND.

        My urologist says further surveillance is unnecessary for me. The CT scan radiation is likely to cause more harm than the tumor returning. I've done lots of reading about my tumor and despite the irrational uncertainty, I'm convinced that it won't come back. My doctors says to stop reading and return to normal life

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        • #5
          Post-op follow up

          I just thought I'd follow up a little with my experiences so far. I had staging tests and a follow up appointment with my urologist on Friday. I'm very happy to say that the lab report was consistent with the surgeons initial report in that there were no malignant features identified. The test results were supposed to be ready in time for the follow up, but weren't so I don't have those results yet. However, the doc was able to view the images from the scan & x-ray and both seemed 'unremarkable'. Funny how much of a relief it is to be unremarkable for once. I'm on a light surveillance with blood work and scans every six months then spaced out after that.

          I've been at the Institute for Prostate and Urologic Cancers at the University of Minnesota through most of this. I was referred there soon after the initial ultrasound located the tumor. I have to say that my experience there has been fantastic. I'm constantly being asked if I have questions, I've been able to do my own research and actually contribute to the decisions being made up to and after my surgery, and my surgeon's staff have pulled off the impossible when trying to coordinate tests and appointments for me. Not to mention the fact that the surgery went extremely well. If anyone here is considering the U of M for any of this, feel free to contact me if I can answer any questions.

          Also, I've noticed that there is not a ton of information out there about sertoli cell tumors, especially information aimed at patients rather than the medical community. I managed to find a few case studies and found that Google Book search was useful for identifying text books, many of which provided bibliographies. This material was still very daunting, especially if you haven't had time to wrap your mind around what it is you're dealing with. That said, if anyone would like to know more about my experience, feel free to contact me. If I don't know the answer, perhaps, at least, I can understand how it feels to have those same questions.

          Cheers,

          Matt
          Cheers,

          Matt

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          • #6
            Hey matt i have a question about your LC experience.

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