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  • Seminoma Survey

    Dr. Nicholas Cost is a testicular cancer specialist and he also serves on our Medical Advisory Board. He has been instrumental and incredibly generous in helping us answer difficult questions for those needing help.

    Now he could use our help having testicular cancer survivors complete his super short survey. Specifically, he is looking for guys that have had seminoma for his seminoma survey. See his letter below.

    I took the survey and it lasted about 2 minutes.

    Mike


    Dear Testicular Cancer Society Members,

    First of all, thank you for your time! Testicular cancer represents one of the true “success stories” for modern cancer treatment with almost all newly diagnosed patients being cured. With such successful outcomes, the focus has now turned to a reduction in the treatment’s side-effects. We are interested in investigating the use of a different method of treating a particular type of testicular cancer, called testicular seminoma, in an attempt to help decrease the side-effects from treatment while preserving the excellent chance for cure.

    You are being asked to participate in this survey because you are a member of the Testicular Cancer Society. Participation is voluntary and there is no immediate benefit to you. This survey is designed to help us understand the potential interest in this issue and help in future study design. If you participate in the survey, your consent to participate in this study is conferred by clicking on the link to the survey. To insure your privacy and confidentiality, your responses to this survey will be de-identified and kept anonymous. The survey data will be used both for developing future clinical trials and potential future publication. If you agree to participate in our survey this in no way implies that you would be a patient in such a clinical trial in the future. We are only asking for your response to help us understand what percentage of patients would be interested in such a study.

    This study has been granted exempt-status by the University of Colorado Multiple Institutional Review Board. If you have questions about your rights as someone in this study, you are welcome to call the Colorado Multiple Institutional Review Board at (303)724-1055.

    Thank you again for your time, and hopefully your participation! Please feel free to contact us using the email address below if there are any questions or concerns.

    The link to the survey is as follows: https://www.surveymonkey.com/r/98WCFGQ

    Sincerely,
    Nicholas Cost, MD
    University of Colorado Cancer Center

    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

  • #2
    I had to exit the survey, since I do not know what type my first was (most likely seminoma, but no way to know) and my second was a mixed (including seminoma) but there is no option to report that.

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

    Comment


    • #3
      Originally posted by Davepet View Post
      I had to exit the survey, since I do not know what type my first was (most likely seminoma, but no way to know) and my second was a mixed (including seminoma) but there is no option to report that.

      Dave

      Yes, Dr. Cost is looking specifically at the options for RPLND for seminoma patients.

      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


      • #4
        I just took the survey. Do you know if the purpose of this survey is specifically RPLND for Stage 2A Seminoma? I am currently getting 3xBEP for Stage 2B Classical Seminoma and I was told by the first oncologist that I met with that RPLND as well as radiotherapy is now typically not used for stage IIB seminoma as first line of defense because there is a good chance that in either case you will likely need chemotherapy anyway, whereas getting chemo first you're likely to be in the clear afterwards.

        This all kind of brings me to a question I've been pondering about radiotherapy for seminoma. I know that now they only use it if the lymphatic invasion is very small so they can use a focused, low dose to prevent it from coming back. My oncologist at Dana Farber says the biggest problem with radiation is that it doesn't actually kill the cancer, it just shrinks it way down and makes it unlikely to come back. I've read that back in the old days when they would just zap everywhere with radiation, people were coming back with cancers of the bladder, colon, pancreas, whereas the chemo is more associated to potential cancers of the kidney and thyroid (which I believe are more treatable as well as preventable, and the incidence is much lower). With this info on the table, it really makes me wonder why they even bother with radiation if there's any lymph invasion.

        Comment

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