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I Dont Understand!!!

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  • I Dont Understand!!!

    My nephew was just diagnosed with TC and one the questions and concerns my sister, family and I have is....You everywhere (in the news, on TV, movie stars etc.) hear about cancer in women but you never hear anything about TC. My nephew had a lump on one of his testicals and never said anything about it until it burst because he for one didnt think anything was wrong and for another because there just ISNT too much info about this that would have put up a red flag to him to say something to my sister and because he frankly was too embarresed.. This makes me mad as hell and I want to know why , why they dont educate young boys and men about this in school and in the media!!!!
    Last edited by ERICS_AUNT; 02-08-06, 01:10 AM.
    Stephany

  • #2
    I share your frustration with how little information is given when it comes to tc but I don't think it's intended to slight mens issues I think it's because it is just so rare. My wife teaches health and physical education and when our son complained about issues which should have tipped us off we just didn't think much of it. This web site is a great resource for tc information and it seems to be visited more every week. If it wasn't for Lance Armstrong this might still be an illness that would go underserved.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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    • #3
      I know that some schools and doctors do teach about testicular self-exams -- but growing up, mine didn't.
      Scott, [email protected]
      right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


      Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

      Comment


      • #4
        My son was educated by his parents and by his school and by his soccer trainer. He still got it, and it he didn't catch it in time to prevent chemo. I felt like Erics Aunt 25 years ago when my husband was diagnosed but not now. I am more outraged by the fact that DOCTORS lack knowledge and don't diagnose it properly. All you have to do is read through some of these threads to see that many of you went to the doctor only to be misdiagnosed causing treatment to be postponed for weeks and in some cases months and in the interim the cancer spread. Yesterday, I went to the doctors for a problem, she said that she was only "speculating" on a diagnosis and referred me to a specialist. A GP is only speculating on your condition. I think "embarrassment" is the other key to the problem. If Eric had a lump on his chest he probably would have brought it to someone's attention before it burst. The mantra on this forum is to educate yourself on your condition and take the management of your health in your own hands. I feel for Eric and his family, hopefully, once they educate themselves about TC they will learn that it is highly curable even though the road to that cure has some bumps. Good luck. We're here to help. Dianne
        Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
        Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

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        • #5
          Yea its tough no one teaches this stuff. Let me share with you the story of how i found mine as an example.

          When i first started to have the pain in my right testical i just thought i had pulled a groin muscle and that it would go away soon. Well it didnt so then i thought it was my diet, I had read that caffeine can cause some swelling and tenderness in the testicals(dont know if this is true or not) so i just figured i was drinking a few to many redbulls. At this point i was dealing with the pain for just over a month, Funny how you can come up with your own stupid reasons as to what is wrong with you rather then go to the dr.

          Then one night im watching t.v. and there is a movie on, Now im the type of person that when i start to watch a movie that i have to see the end of it no matter how bad it is. Well the name of the movie was called tomcats, It was realy a dumb movie but i had to see the end, Now halfway through the movie one of the guys started to have symptoms, As the movie progressed every time he would complain about something thing i was like "wow thats the same thing i have" the towards the end it turns out that he had TC. At that point i turned ghost white, I called my dr. the next day and a week and half later i was having my surgury. I look back on that day which is just about 4 years ago to the day( i got the call from my dr. that it was cancer on feb 14 2002) and i wonder what would have happend had HBO not had that movie on? What would have happened if i had not watched it? I truly think that better education needs to be done about it. No one should find out that they might have cancer by a b-rate comedy movie.

          So what do we do about it? Well for starters i did not try and hide what i went through. I told friends co-workers and any one who asked, I told them the symptoms and was open and honest about it. Some men might be ashamed that they had to have a testical removed i was not. It happend i dealt with it and having a testical removed was better then dying of cancer. Now i play internet games and i posted to my online friends about what happend to me and what to check for, The response two of them had the samy symptoms with one of them having TC and requiring chemo. Had i not posted or been ashamed who knows what would have happened to him. I think that is the key to awarness, For people who have had it not to be ashamed about it. I think that is the overall issue guys just dont like to talk/think about having one of there little buddies removed.

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          • #6
            I Dont Understand!!!

            So tell me how do we get these kids/men educated about this if it is to embarrassing how do we get the schools to do more education on this and from what I understand it isnt as rare as we think it is as a matter of fact from what i hear from my sister and the doctors if female cancer runs in the family it is likely that males will get TC, SO WHAT TO DO?????
            Stephany

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            • #7
              Stephany,

              coming from a very different cultural background (European), in the ultimate analysis it's a very societal "thing". Are we comfortable accepting sexuality and sexual organs as a matter of life. Is it ok to talk about a hurtful testicle or a spot on the gland of the penis? Is it ok to feel up yourself and even to masturbate (male or female) to become acquainted w/ ones own body.

              Does the previous paragraph make you or any other reader uneasy? If so, we just nailed down the problem.

              /M




              Originally posted by ERICS_AUNT
              So tell me how do we get these kids/men educated about this if it is to embarrassing how do we get the schools to do more education on this and from what I understand it isnt as rare as we think it is as a matter of fact from what i hear from my sister and the doctors if female cancer runs in the family it is likely that males will get TC, SO WHAT TO DO?????

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              • #8
                I guess another question to ask would be WHY IN THE WORLD didn't his doctor catch this problem when your nephew went for his yearly examinations and WHY didn't his doctor explain the need for routine monthly examinations and the risks of TC like 99.9% of pediatricians and family doctors do for young men over the age of 12-13 ??????????????????? Has anyone asked his Dr these questions ?????
                Moffitt Cancer Institute
                CANCER SUCKS
                Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal [email protected] 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

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                • #9
                  and there lies alot of the problem NO yearly check ups what young boy of 21 or 22 thinks they should be doing yearly checks at that point in thier life all they are thing about is right in the moment!!! NO teachings in school that tells them they should have yearlies!!!
                  Stephany

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                  • #10
                    I am Eric's mom. Believe me, at 23 we didn't think there was a need for yearly check ups. He went to the docotor only if he got sick. The other problem is that at that age MANY young people do not have health insurance and just plain can't afford to go to the docotor. I agree with my sis, this needs to be taught in Health Class at school just like we do with Women's issues, i.e., pap smears and breast exams.

                    If this is such a rare disease then why are we now hearing so much about it? Is it because some famous people have gotten it? I am glad it is being talked about more and more but for how many is it too little too late?

                    Debbie, Eric's Mom

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                    • #11
                      I think you hit the nail on the head Debbie... If Lance Armstrong or some other famous personality had never been diagnosed with TC then the information would be as limited today as it was 6-7 years ago!!!! I think that the work Lance Armstrong and others do for raising awareness and fundraising are great but they all seem to target cancer in general. TCRC and TC-cancer.com are 2, in the short list that address TC specifically. Thats why I truly beleive that what we do at this site is so important. Young men or men in general need a place to find answers,ask questions and get insite from survivors that have been through TC. It is the job of each and everyone of us here as survivors or the family/freinds/caregiver of a survivor to raise awareness in any way that we can and hopefully ,one day, enough people will have raised awareness through the years ,were young men will be educated in school,at the dr's office,on TV and by their parents and piers because info regarding TC will be common knowledge... Until that day it is our job to open as many eyes as we can everday!!!!! DON
                      Moffitt Cancer Institute
                      CANCER SUCKS
                      Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal [email protected] 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

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                      • #12
                        It's true: many people know Lance Armstrong's story (and it's a great one!), and some have heard Scott Hamilton's or Tom Green's. Can you imagine how difficult it must have been before the Internet was mainstream to connect with other survivors of a rare disease?
                        Scott, [email protected]
                        right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                        Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                        Comment


                        • #13
                          Because so many tc people check into this site we tend to lose perspective as to how rare it really is. This year 7500 men will be diagnosed with tc and 183,000 women will be diagnosed with breast cancer. But, it's rarity should not stop schools from teaching the boys how to do a simple self exam.
                          Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                          Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                          Comment


                          • #14
                            Hmm, good conversation going on here.

                            It is definitely a frustrating issue. I know in my case, ever since i was younger, and would get my yearly exams,,, my doctor would always remind me to check for abnormalities down there etc. I also vaugely remember learning about it in high school health classes. But its definitely true that before hearing that Lance had it,,,, I dont EVER remember it being talked about in the public eye. And yes, thank god for the internet and sites such as this one.... what a help its been!!

                            But no matter how frustrating it is,, you must remember that TC has one of the highest cure rates of any cancer. Research and learn as much as you can and ask a lot of questions to Eric's doctor.. and dont be afraid to get second opinions etc.

                            Hope all goes well.

                            -Kevin
                            Diagnosed 10/03/03
                            I/O 10/15/03
                            RPLND 1/21/04
                            Completed the Boston Marathon 4/19/05
                            Completed the Boston Marathon 4/17/06
                            Baby Riley born on 3/29/09

                            2012 Livestrong Challenge Web page

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                            • #15
                              Yesterday I sent an email to our local news station requesting that they start a program similar to the programs that they have for breast cancer. Will let you all know what happens, if anything.

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