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Living With Testicular Cancer

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  • Living With Testicular Cancer

    Does anybody else feel that testicular cancer is somewhat disregarded to that of other cancers? I don't know about all of you but hanging out with some friends after my diagnoses and surgery I got one nut jokes etc. It kind of pissed me off deep down but brushed it off. I mean I don't mind joking but I feel like there isn't much empathy towards testicular cancer. I've heard "you just got your nut removed you'll be good". I don't mind it much now but I was kind of pissed off in the beginning when I was under immense stress and uncertainty. Even now I feel I have an uncertain future with cancer that could pop up at any given time and it's always on my mind. Sorry for my rant. I have definitely had some annoying encounters during this journey. Have any of you guys had similar experiences?
    April 2017 - Scheduled physical with DR for testicular pain / ultrasound scheduled
    May 2017 - US shows 3 solid masses 1.2 x 0.7 x 0.7 cm/0.8 x 0.5 x 0.8 cm/ 0.4 x 0.3 x 0.4 cm
    June 2017 - Left orchiectomy & diagnosed with Seminoma
    As of October 2017 - All clear!

  • #2
    I have dealt with it too and I went through chemo. I know our disease is very curable but the fear is always there. It’s something we all deal with that others wouldn’t understand.
    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! 9/12/18 All clears up to here!

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    • #3
      I’m not sure of your age but at my age my experience was that it was my peer groups first encounter with a deadly disease like cancer in their close group. For some people they don’t want to think about it, others joke, others really empathize. I feel like each person is trying to figure out how to deal with it themselves.
      Age 31 - Portland, OR
      01NOV16- Pain in right testicle, palpable mass
      13NOV16- R I/O. Markers normal
      27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
      06DEC16 - CT scan clear
      09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
      03JAN17- Ended 1xBEP; start surveillance
      18MAR17-2nd pathology report shows 90% EC , 10% seminoma

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      • #4
        I completely understand. People like to make fun of it. I do it sometimes too. People need to know the right time to do so. I have my good days and bad days. My biggest enemy was myself in the beginning. It's hard to forget you have/had cancer. And I agree, TC isn't talked about or discussed much at all. All you see is breast camcer awareness, which is awesome, but what about the rest?

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        • #5
          Unfortunately, some people look only at the physicality of cancer too. While each physical battle is different the mental and emotional impacts that occurs after hearing, "you have cancer" and felt across the spectrum of cancers and stages regardless of what physical burdens are needed for treatments.

          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.

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          • #6
            YES! Even by medical professionals. I don't think people joke about having a mastectomy the way they joke about an orchiectomy. I found out I had skin cancer during my son's treatment, the dermatologist's nurse made it seem like Grant had not been through anything. Sorry, losing a testicle, than 3 rounds of BEP plus post chemo RPLND is not a walk in the park for a 17 year old or anyone!
            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.

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            • #7
              Wow. This seems more common than not. Thank you all for chiming in. Trekga, that is unreal! I would have been peeved if I heard a nurse saying that. Your son has been through a lot and to minimize that is something beyond my scope of understanding especially from somebody in the medical field! I hope you were able to detect the skin cancer early and heal.

              April 2017 - Scheduled physical with DR for testicular pain / ultrasound scheduled
              May 2017 - US shows 3 solid masses 1.2 x 0.7 x 0.7 cm/0.8 x 0.5 x 0.8 cm/ 0.4 x 0.3 x 0.4 cm
              June 2017 - Left orchiectomy & diagnosed with Seminoma
              As of October 2017 - All clear!

              Comment


              • #8
                It's been hard on me too. Certain people in my life lost interest - high cure rate blah blah. But that's either because they don't know how to show they care or, in other cases, they actually don't care much about me. At what survival rate percentage do you start to give a crap?
                July 2016 - Left I/O
                December 2016 - BEPx3
                All clear for 1 year!

                My Testicular Cancer Support Kit
                First Oncologist Visit Checklist
                Simplify Cancer Podcast

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                • #9
                  I've never been particularly motivated to even mention my TC to most folks. I understand the bit about spreading cancer awareness & all, but I had an experience back in the late 70's where someone made a very inappropriate comment & I decided then that it wasn't anybody's business but mine. Only very close friends & family are aware these days.(& of course, everyone on this forum ;o) )

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

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                  • #10
                    Yes its not given the same response or emotional care as other cancers. Particularly breast cancer. I think it also hits hard at men's self esteem - lots of jokes about "having balls" as courage or manliness. Also I have seen jokes in movies about TC that they would NEVER do about breast cancer. I think men are expected to simply not let things bother them - and even among us survivors we dont express our sorrow or loss as much. My wife was supportive to an extent but she did not get the emotional side of the loss for me - since I was "lucky" to not have had chemo or come close to dying. I dont talk to people in person about being a TC survivor. Maybe 8 people in my life have ever known about my TC - and that includes family who had to know. There have also been sad side effects that I had to deal with afterwards that were so damn difficult.
                    Last edited by roybatty; 10-27-17, 07:40 AM.
                    "More human than human is our motto...."

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                    • #11
                      You guys are all so right. After diagnoses you kind of figure out who your true friends are. Chapter 2 of life looks a lot different after diagnoses. Maybe someday perception will change for testicular cancer!
                      April 2017 - Scheduled physical with DR for testicular pain / ultrasound scheduled
                      May 2017 - US shows 3 solid masses 1.2 x 0.7 x 0.7 cm/0.8 x 0.5 x 0.8 cm/ 0.4 x 0.3 x 0.4 cm
                      June 2017 - Left orchiectomy & diagnosed with Seminoma
                      As of October 2017 - All clear!

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