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  • Australia

    Hey Fellas,
    How are you going?
    Just sending a message to see what you think this group could do and suggest some ideas. I have been disappointed in some ways about the level of help with cancer survivorship specifically to TC. Instead of expecting the help to come to me I have gone out to find it and there is basically no cancer groups that relate specifically to TC and the general cancer survivorship groups are few and far between. TC is also a cancer that relates almost specifically to younger people, that is rare in the world of cancer and gives some of it's own challenges to overcome.
    Obviously everyone with TC is a bloke and I think blokes would rather just meet up in pub somewhere for the most part as well as email/phone support. This does not help with getting people to join this group though. I think this forum is the best site on the internet to attract people from Australia but there is also Cancer Councils, notice boards at hospitals, other cancer groups that will also spread the word. Another internet site may also be an idea but there is already this one and a wealth of knowledge and experience to go with it.
    Everything has to start from somewhere, any other ideas?

    cheers

    Trent
    Diagnosed 1/03/08
    Left I/O January 2/11/08
    Pathology - Extensive necrosis. Predominantly Embryonal Carcinoma, small amount of Yolk Sac Tumor.
    Largest Paraortic lymph node 1.0cmx1.3cm
    1/03/08 node increased to 2.5cm
    Finished chemotherapy mid April 08

  • #2
    Hi Trent

    Like you I am in QLD and with TC#1 7 years ago I did look for some support but there was nothing specific for TC guys. I always was going to approach the QLD Cancer to see if I could help and after being so slack approached them earlier after TC#2 this year and asked about the way I could help. They have one person on their list for TC support and while they would like help they will note take you into their program until after 18 months out of treatment, they said they would be in touch with me next year.

    This local web site popped up a few months ago linked to the Broncos/Titans but does not appear to have been updated. http://www.hangontoyourmates.com.au/

    I guess its opening up guys to talk about it that is the biggest problem and I find it frustrating that the Cancer Council does not promote an awareness program.

    Cheers

    Kiwi
    >>>>>>>>>
    TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
    TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

    Comment


    • #3
      Unless anybody has an objection, I'd like to add myself as an honorary member having spent some time touring and learning. We have offices in Sydney and Melbourne. And I shall return!
      "Statistics are human beings with the tears wiped off" - Paul Brodeur
      Diagnosis: 05Sept07 Right I/O: 13Sept07; Pure Seminoma; Surveillance only per NCCN: All Clear August2013 (CT scan, Markers)

      Comment


      • #4
        Thanks for pointing this out KiWi.

        I am a 31yo guy in Sydney had cysts since I was a kid, which was diagnosed as possible TC with high hCG markers. I/O done (recovering) and following up with oncolgists. Stage 1b with vascular intrusion. Initial operations done at St Vincents but going to RPH in Camperdown for followup with the Sydney Cancer Centre.

        *wave*
        Initial diagnoses: Elevated hCG, Left I/O 17-June-2010. Prosthetic implant.
        Pathology: Stage 1b, Seminoma/Teratoma
        Treatment: Surveillance. hCG normalised 07/10
        Relapse: Elevated hCG. 3xBEP finished 24/01/2011

        Comment


        • #5
          Hi guys
          Im in qld here, to get help i have found is near impossible, as im 4.5 hrs west of brisbane, so if you woud like to chat about anything, n everything feel free to contact me. Im 30 here n only have me orchidectomy 4 weeks ago so its all new to me, and depressing, me msn is pete_mundell@live.com.au
          Talk soon guys

          Comment


          • #6
            Gidday fellas, I'm in northern NSW, just finished my 1st cycle of BEP , so far so good, no major side eefects, starting to lose a little bit of hair.
            Getting my treatment at Lismore base hospital in the new Chemotherapy unit, which is great, people are good and friendly and always willing to help.
            Flash recliner chairs, disgital TV, free tea coffee biscuits sangas etc,.
            I was diagnosed when I went for a 45 yr old health check, I had a vasectomy about 18 years ago and recently remarried, so had a reversal 08' , so when I went for a check up my doc referred me to a urologist who was the doc who did the reversal and he had a look at his handy work ( I now have an 18month old boy!!) he detected a lump in my left testicle, had scans , CT , ultrasound etc, saw doc on a thursday arvo and was in hospital having an Orchidectomy the next day.

            Op went well up and about the very next day, hardly any pain at all.

            will update when I start my 2nd cycle next week.

            Cheers guys hope you are all doing well.
            Scrotal ultrasound 13th Sept 2010
            CT Scan chest, abdomen, pelvis 18th October 2010
            Diagnosed October 29th 2010,
            Laft I/O October 30th 2010.
            Mixed germ cell non seminoma, stage 2b, metastasis in lymph nodes on Aorta, kidney and oesophagus, largest being 37mm X 20mm.
            3 X BEP started 8th November 2010.
            Finished 5thJanuary 2011.
            2nd Februray 2011 all clear
            2nd February 2012 all clear

            Comment


            • #7
              Hey Andy

              Welcome - the groups here are hard to keep up with as you do not appear to be able to subscribe to updates, anyway there are a few guys here.

              Cheers
              >>>>>>>>>
              TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
              TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

              Comment


              • #8
                Hi guys! Not long found this site, and being new and not quite with the lingo yet, having trouble, so glad to meet some local lads and ladies.

                My hubby was diagnosed four months ago with stage 3c tc. Abdo involvement, lungs were chockers, and a 3cm brain tumor were also detected. First day of BEP and he heamohraged and was flown to the Austin in Melbourne. We're in bendigo. One month in ICU on the ventilator, a stroke, and a dose of shingles nearly got the better of him, but he's a tough bloke and got through it.
                They started the chemo again 4x etopiside and cisplat. At diagnosis his beta HCG level was 2.3million, a the end of the four rounds, it was 11. This week he started the first of four rounds of VeIP treatment. Some scary stuff. We are collecting stem cells next week if things go well.
                That is our story in a nutshell. Anyone in a similar situation? Desperate here to hear some positive news of a comparable case.
                Regards, Lauren
                Husband diagnosed march '11 -Beta HCG Levels 2.3 million
                - Stage 3c chirocarcinoma -Abdo, lungs and brain mets
                - Brain hemmorage, stroke -4x EP chemo ending with BHCG11
                - July '11 start 4x VeIP rounds chemo
                - Stem cell harvesting failed July '11, (no stem cells to collect)
                - September end of chemo, BHCG less than 3
                - Follow up PET, CT, MRI clear. BHCG less than 3
                - Lung surgery in Dec11. 20 tumors removed from right lung
                - April12, no change, BHCG still at less than 3. Looking goodsigpic

                Comment


                • #9
                  Hi Guys,
                  G'day from Bendigo Victoria. Been cancer free for 5 months now. Another mate and I have set up a campaign/foundation called BlueBall Foundation ( http://blueballfoundation.com.au ) to raise awareness of TC and Men's health. We made it to the front page of the local paper and alot of opportunities opened up for us to get our story out there.

                  Cheers,
                  Mike Elliott
                  Shameless Plug:
                  BlueBall Foundation - Ready, Set, Check.. mate!
                  http://BlueBallFoundation.com.au

                  Facebook: http://facebook.com/BlueBallFoundation
                  BlueBall Tweets: @BlueBallOnline
                  Mike Tweets: @MickTheAussie

                  Comment


                  • #10
                    D . LOOKING FOR SOME FRIENDLY ADVICE ]

                    Hey Everybody ,
                    My name is Gary , Irish bloke living in Darwin the last 4 years , diagnosed with TC 2 years ago , had a relapse in September , just finished 3XBEP . Like alot of you guys , really struggling to get some proper advice , I’m starting to question my oncologist and his experience with TC . Not sure if anyone has being in similar position . I’ve just put together a brief history of the past two years & where I’m at right now .
                    Basiclly I just finished chemo , it’s had no effect on my AFP markers or the enlarged lymph nodes , not sure what to think now .

                    Feeling slightly confused but more frustrated . I could really do with some advice , I'm starting to lose faith in my Doctors decisions regarding my treatment .
                    Today was supposed to be the day when the good news started , the results from my post chemo (3xBEP) CT Scan & Bloods .

                    AFP 13.7

                    CT LYMPH NODES : There is a chain of abdominal lymph node in the left para-ortic region just inferior to the left renal artery. they measure up to 11mm in short axis which is stable .

                    My AFP has always being slightly above average since i had my left I/O(7/9/2015) , its always fluctuated between 12-15 , its never being below the magic marker 10 .

                    Its being 4 months since i had my initial CT followed by PET scan , there has being no change in Lymph node size since then. My AFP is slightly elevated which has always being the case since 2015 .

                    I just get the feeling from my Doctor today , that he might of rushed me into Chemo , maybe we should have watched the AFP , then had another scan in 2-3 months . Which is exactly what he wants to do now , hes asked to come back in 6 weeks with new bloods and then decide on our next step Biopsy/RPLND.

                    Thats why I'm feeling confused about the whole situation , did i just complete 3x BEP for no reason , should we not have went ahead with the Biopsy before Chemo rather than after chemo ?

                    SEPT 2015 Left I/O . No Invasion .
                    Tumour Size 17x15x12mm
                    confined to the testis
                    Embryonal Carcinoma

                    Followed survelliance protocol till 7/8/2017 two enlarged lymph nodes found on CT Scan sent for PET Scan
                    Lymph Nodes had increased from 7x7mm to 9x9mm


                    PET SCAN RESULTS 25/8/2017 CONCLUSION:
                    The known enlarged retroperitoneal para-aortic lymph nodes are F D G avid consistent with metastases . No scan evidence of F D G avid malignacy elsewhere .

                    9/10/17 Started 3xBEP
                    9/12/17 Finished 3xBEP

                    Today 15/12/17) Post BEP CT &Blood , no change in lymph nodes , slight change in AFP

                    AFP RESULTS JUNE -DECEMBER 2017
                    07/8 14.7
                    16/8 14.7
                    06/9 14.1
                    20/10 11.9 ( Finished 1x BEP)
                    27/10 11.3
                    17/11 12.9
                    11/12 13.7 (3xBEP Completed )
                    Back in 6 weeks to check AFP , and to decide the next step in my treatment . feeling very nervous now .

                    Sorry guys i tried to explain everything as best i can , any advice would be really helpful . My Doctor is starting to make me feel nervous about everything .
                    Feeling confused & frustrated . Looking for some advice .

                    Comment

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