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TC Survivors Needed: Research Survey

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  • TC Survivors Needed: Research Survey

    The Testicular Cancer Society has been working in concert with researchers at the University of Central Florida. We would love your help in getting as many testicular cancer survivors as possible to participate in this short survey that we created. Please feel free to copy and past this post via email to others survivors that you may know.

    The survey may also be reached at: http://bit.ly/TCSS2018

    Please see announcement below:
    -------
    Researchers at the University of Central Florida (UCF) are conducting a study to learn more about the effects of testicular self-examination, and other potential screening practice experiences, on early detection of testicular cancer. To participate, you must be between at least 18 years of age, must identify as male, must have been treated for testicular cancer in the past, and must be able to complete one 20-25 minute online survey. You will need access to a reliable and consistent internet source to complete the survey. The study will include approximately 500 males.

    Participation is voluntary, and you may withdraw from the study at any time without penalty. Your survey responses and other study information will remain confidential and will never be linked to your name nor will be shared with any individual or organization besides the researchers listed above. There is no compensation or other payment to you for taking part in this study, but your participation is very much appreciated as the information will be used to help create a healthier society. Further, there are no reasonably foreseeable risks or discomforts involved in taking part in this study. We cannot promise any benefits to you or others from your taking part in this research, but again, your responses are valuable to the successful completion of this project.

    The individual conducting this research is Dr. Michael J. Rovito of the University of Central Florida’s Department of Health Professions. Should you have a question or you would like more information about the study, please do not hesitate to contact him via email at bhrg@ucf.edu or telephone at 407-823-3888. His campus mailing address is 12805 Pegasus Drive HPA1 Room 269 Orlando, FL 32816.

    Should you want to continue to the survey, please click on the hyperlink included at the end of this email.

    Thank you for your consideration!

    SURVEY HYPERLINK:
    http://ucf.qualtrics.com/jfe/form/SV_0VZ8WuQkF76gQzH

    Best,
    Michael J. Rovito, PhD, CHES, FMHI
    -----
    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

    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

  • #2
    I completed it!
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15 - 9/18/15: 4xEP
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    3/29/2018 all clears up to this date!

    Comment


    • #3
      Completed it. Is this the same survey that was mentioned before? I remember that an older one mentioned was over the phone, is that one still ongoing?
      3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop! 3/19/18 All clear!

      Comment


      • #4
        Hi Mike done.

        Comment


        • #5
          Originally posted by dcalandrelli View Post
          Completed it. Is this the same survey that was mentioned before? I remember that an older one mentioned was over the phone, is that one still ongoing?
          We have listed several different survey opportunities lately but this one is brand new. The hypothesis of the survey was developed by myself and I have worked in concert with researchers at the University of Central Florida to develop the survey. We have put a lot of work into it and certainly appreciate everyone that takes part so thank you in advance.

          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

          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

          Comment


          • #6
            What's the premise of the survey?

            Comment


            • #7
              Originally posted by shabby View Post
              What's the premise of the survey?
              Please see the original post but as it mentions:

              Researchers at the University of Central Florida (UCF) are conducting a study to learn more about the effects of testicular self-examination, and other potential screening practice experiences, on early detection of testicular cancer.

              Thanks,
              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

              For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

              Comment


              • #8
                Thank you for such a great response as we have had so many survivors completing the survey but we would love to have more.

                If you haven't done so already, please consider participating in the survey we have developed in concert with researchers at the University of Central Florida.

                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

                For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                Comment


                • #9
                  Grant completed it.
                  Son Grant
                  dx 12/21/16 at age 17

                  BEP x3
                  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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                  Comment

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