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  • Testicular Prosthetic Survey

    Hello All,

    Dr. Phillip Pierorazio; Director, Division of Testicular Cancer at the Brady Urological Institute and Department of Urology, Johns Hopkins Hospital; Baltimore, Maryland is looking for participants for a survey that contains questions regarding your history of testicular cancer. Currently, there is a lack of information about patient satisfaction with their treatment, particularly regarding decisions about whether to receive a testicular prosthesis. The goals are to learn more from you and to help us better take care of men in the future.

    Participate in the Testicular Prosthetic Survey

    The survey is open to those that have and have not received a prosthetic and we hope that you can participate and help pave the road for future survivors.

    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.

  • #2
    The Pedi Urologist never even mentioned a prosthetic to Grant. He did fill out the survey already.
    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


    • #3
      I filled it out.
      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


      • #4
        Filled it out best I could, some questions none of the answers were actually accurate.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

        Comment


        • #5
          “Being able to wear pants that are more fitted “ - this question is a very bad taste imho and does not belong on any medical survey. To me it reads like a bad joke.

          Comment


          • #6
            Originally posted by vpirh View Post
            “Being able to wear pants that are more fitted “ - this question is a very bad taste imho and does not belong on any medical survey. To me it reads like a bad joke.
            I'm not going to pretend to speak to everyone's experience and I'm sure they had some preliminary reason to think it might be a benefit that some experience and prefer. They're probably just trying to get our guinea pig input on it. If it doesn't belong they'll certainty see it in the responses
            *** Serum Markers Never High***
            July 14, 2017: Lump on right testicle
            July 20: US show 3 lesions "highly suspicious for testicular cancer"
            July 26: Pelvic CT shows 1 lymph node @ 2cm, 1 @ 1.4cm
            July 30: Right Radical Orchiectomy
            Aug 2: Pathology report "100% Embryonal Carcinoma"
            Aug 20: Oncologist stages 2A, wants RPLND primary treatment, 2nd CT
            Sept 13: 2nd CT shows nodes now 2.4cm and 1.8cm
            Sept 15: Now Stage 2B, New treatment 3x BEP
            Oct. 2: Begin 3x BEP
            Nov. 28: Finish 3x BEP 2018
            Jan. 04: First all clear CT. Scattered Ground Glass Opacity in lungs common to drug toxicity
            Mar.06: Blood tests negative. STILL ALL CLEAR

            Comment


            • #7
              Thanks to everyone that has completed it so far. Typically, these types of surveys start with a focus group with a few patients to try to grasp their issues and then apply them to larger groups to see if they are really issues or not. Thus, some questions may not apply to all or seem a bit weird but it is just part of the process in figuring out what can be done to make things better for the next guy.

              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
                I'll try to get my son to fill it out. He went with the prosthetic

                Comment


                • #9
                  I probably would have got the prosthetic if it was offered at the time of the orchiectomy, but they didn't have one lying around at the time, and there's no way I was going to undergo a whole other surgery just to put a rubber ball in my sack.
                  11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
                  12/8/16 Diagnosed with TC in left testicle.
                  12/9/16 Left I/O.
                  1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
                  1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
                  2/2/17 Pathology results: pN0. They say I still have a 10% relapse chance.
                  5/9/17 One and a half year all clear.

                  Comment


                  • #10
                    No offense to those who did, but if I was going to have some prosthetic put in my body, I'd have to think for a while which to get. Why get a ball? I already have one of those, y'know? Why not get a boob, for instance? On the side missing a ball. Then I could grow half my hair out, and, and.... okay, probably this line of reasoning ends in divorce. I'm just saying that there are other options, if you're willing to do a whole other surgery.
                    11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
                    12/8/16 Diagnosed with TC in left testicle.
                    12/9/16 Left I/O.
                    1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
                    1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
                    2/2/17 Pathology results: pN0. They say I still have a 10% relapse chance.
                    5/9/17 One and a half year all clear.

                    Comment


                    • #11
                      Originally posted by unotesticulo View Post
                      No offense to those who did, but if I was going to have some prosthetic put in my body, I'd have to think for a while which to get. Why get a ball? I already have one of those, y'know? Why not get a boob, for instance? On the side missing a ball. Then I could grow half my hair out, and, and.... okay, probably this line of reasoning ends in divorce. I'm just saying that there are other options, if you're willing to do a whole other surgery.
                      No offense, but what are you drinking? I think I may want some ;o)
                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP

                      Comment


                      • #12
                        That's what I was thinking Davepet, except I'd skip that kind of drink.

                        Comment

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