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  • Surveillance protocols...

    Please read this article and post here your opinions
    Last edited by AdrianB1971; 03-08-06, 09:26 AM.
    2005-03
    Stage III EC 85% + Sem 15%
    AFP=2.6; HCG=10, 20,28 and rising
    FULL CAT scan:
    -abdominal lymph clear
    -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
    4 x BEP changed to 3 x BEP at my request
    from 2005-05....Surveillance

  • #2
    My opinion

    Hello,

    Well, I trust CT scans more tha anything else.

    This article was interesting, but still... it was just yet another article, which probably contraddicted other articles in the same field.

    What I found scary, though, is the number of relapses. I am in surveillance, and I do worry about cancer coming back. This number in this article are telling me that the median relapse percentace is 11.4%, which is a painful number to watch. I could be in that 11.4 percent. In fact, my chances are higher because I didn't have chemo.

    I guess it's a good reminder that we should enjoy life.

    Merc.
    Diagnosed TC 3rd Sep 2005
    Right I/O 6th Sep 2005
    10% carcinoma, 5% seminoma, 50% mature teratoma, 35% Yolk-sac tumor
    AFP: 20 Oct 05: 3; 9 Dec 05: 4; 12 Jan 06: 6
    CT scan: nodes adjacent left renal hilum, 6/7 mm (Sept 05)
    Surveillance

    Comment


    • #3
      Hi

      merc, you are right. every checkpoint in TC surveillance protocol is like a new, powerful, start of life. Any problems disappeared and are too small than the TC relapse threat. Especialy for me, because the TC relapse is equivalent with DEATH.[I dont see any sense of life living mutilated by the treatment (RPLND and second line of chemo)]. The life is wonderful...but can also be a hell. The quality of life is essential for us, at ours age.
      By the way, I'm also very very concerned about the relapse rate !!! Even on this forum I observed there are a high relapse rate.
      ...yes...I'm afraid....
      2005-03
      Stage III EC 85% + Sem 15%
      AFP=2.6; HCG=10, 20,28 and rising
      FULL CAT scan:
      -abdominal lymph clear
      -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
      4 x BEP changed to 3 x BEP at my request
      from 2005-05....Surveillance

      Comment


      • #4
        me again

        I forgot to mention : In case of relapse, I'm decided to try an alternative treatment. Maybe Breuss diet. Who knows....maybe it works If not, I'll go to make a short travel to haven (or hell) and I'll came back in another body, more performant and without programming bugs like now
        2005-03
        Stage III EC 85% + Sem 15%
        AFP=2.6; HCG=10, 20,28 and rising
        FULL CAT scan:
        -abdominal lymph clear
        -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
        4 x BEP changed to 3 x BEP at my request
        from 2005-05....Surveillance

        Comment


        • #5
          Adrian,
          I understand your fear about relapse also because tomorrow I have my check date.
          But I don't agree with you about relapse=death thinking. We all must be aware that sometimes problems with TC are not solved with one chemo and can be very painfull. I can see a lot of stories of heroic persons which went troug many surgeries, chemos, radiations..., but finally they won.

          I believe we should all fight till the end.
          Seminoma I. stage ,May 2004,Si Deus pro nobis quis contra nos

          Comment


          • #6
            Not sure...

            Hi Adrian,

            I am heavily freaked out myself. My life has never been the same... and at the same time, it has been.
            I decided that I would never, ever do something I hate doing. And guess what I am doing right now as a job? Something I hate! (Fortunately, only temporary. But still...).

            However... I read all of your posts (I am an editor, which more or less means "I remember everything I read, and am also cursed by it"). I must say that I am worried about you - even though I don't even know you.

            I have to tell you a secret: you are going to die.
            So am I.
            So is Anna, my partner whom I dearly love.
            So is everybody.

            This is very sad. At the same time, it's also... part of life. It's our slice of existence.

            Here is another secret: you are likely to suffer a lot in the process of dying. If it's cancer, it will be pain. If it's a car accident, it will be the impact. If it's old age, a number of things will be inflicted upon you. So, a part from a few lucky people, you are most likely going to suffer considerably before dying.
            So am I.
            So is Anna, my partner, whom I dearly love.
            So is everybody (well, nearly everybody).

            I am a Buddhist. A lot of people in this forum are Christians. We all believe in something (even if it's the absence of God). In the end, we all live our lives.

            I feel (I may well be wrong) that you are living your life in constant, immense fear of treatment again. How long do you spend, every day, worrying about it? How intense are those thoughts?

            I can't tell you how you live your life. However, if it's true that you are gonna relapse and get sick again (who knows?), that's *later*.
            Now, it's a different story. Now, it's life.

            Don't let hypothetical futures destroy your life (I'm using your own words here). Don't let the past affect you.
            You are here, now. Do what you want to do.

            Right now, you are not dead. Right now, you are not in the middle of immense suffering. Right now, you are not about to die.

            Celebrate that.


            Merc.

            Originally posted by AdrianB1971
            merc, you are right. every checkpoint in TC surveillance protocol is like a new, powerful, start of life. Any problems disappeared and are too small than the TC relapse threat. Especialy for me, because the TC relapse is equivalent with DEATH.[I dont see any sense of life living mutilated by the treatment (RPLND and second line of chemo)]. The life is wonderful...but can also be a hell. The quality of life is essential for us, at ours age.
            By the way, I'm also very very concerned about the relapse rate !!! Even on this forum I observed there are a high relapse rate.
            ...yes...I'm afraid....
            Diagnosed TC 3rd Sep 2005
            Right I/O 6th Sep 2005
            10% carcinoma, 5% seminoma, 50% mature teratoma, 35% Yolk-sac tumor
            AFP: 20 Oct 05: 3; 9 Dec 05: 4; 12 Jan 06: 6
            CT scan: nodes adjacent left renal hilum, 6/7 mm (Sept 05)
            Surveillance

            Comment


            • #7
              thx merc

              Very nice words merc. I'm trying to enjoy the present and sometimes I succeed. But the remember of TC, the terible trauma I had, becoming from a handsome young man, with very great future plans and a lot of girlfriends ....a CANCER survivor, at 34 years, half mutilated(eunuc) and with continously perspective of going thru the hell again and again....as I said...this memory is permanent in my mind, even when I laugh...even when I sleep. Maybe I'm weak, maybe this trauma is the begining of a depresive episod...who knows....Maybe I'm not prepared to live at ANY cost. What is alarming indeed, is the fact that I'm haunted by death thoughts. I steel have moments when I'm waiting to break this nightmare and return to reality where all is like before. Remember : I never had depresive simptoms. IT'S NOT DEPRESION, because if somebody tells me : 'Ok Adrian, you are completly cured and no surveillance is nedeed..so go home and live your life as you want', then all the problems, all the dark thoughts would be ended. I think I'm also ok with testosterone level because I have near normal libido, near normal sex drive and normal hair growing. What is the worst think is the posibility of cancer relapse...whole the life. The continuous threatening of cancer relapse is enough for me to going mad. Simply I feel I dont have enough strenght to fight TC again. I hope and I'm praying to GOD that TC will never return.

              And now, according to your advice : 1-2-3+ ...beers and some multiplayer games with my friends . And totmorow.....let to be what the God wants.

              All the best
              Last edited by AdrianB1971; 03-13-06, 08:06 AM.
              2005-03
              Stage III EC 85% + Sem 15%
              AFP=2.6; HCG=10, 20,28 and rising
              FULL CAT scan:
              -abdominal lymph clear
              -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
              4 x BEP changed to 3 x BEP at my request
              from 2005-05....Surveillance

              Comment


              • #8
                Adrian, I am upset with you. You are focusing on the negative not on the positive. Are you saying if you found a woman you loved and she had only one ovary you would have a problem and dump her? This "half-enuc" stuff is [email protected]#!&. I read the article on the link and it was alarming. However, numbers are numbers, you can make them be anything you want. With a different cohort you could have different numbers. There is no reason that you can't have the same future you had before TC. You are holding yourself back. It takes more than balls to make a man just like it takes more than breasts to make a woman. And you are one lucky guy because you sure as heck haven't lost your looks!! I pray that you do not have a reoccurrence, and if you do I pray that you will not give up. You will know when it is time to give up, like Andrew, so until that day comes, enjoy your life to its fullest. Mom/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

                Comment


                • #9
                  Hey Adrian,

                  living with the possibility of recurrance is really difficult, we each must find our own way.

                  If it helps and I'm not sure it will, today I am am told that (1 year on from RPLND) the doctors are pretty sure I am 90% cured. I don't know about you but I reckon thats a pretty good position to be in. A 1 in 10 chance it will come back.

                  Next time you are in a place with a few healthy girls you should feel really sorry for them. It's my understanding 1 in 7 are a breast cancer case waiting to happen.I think they are in a much worse position than you and me.

                  I really hope you can try to forget about it,never completely maybe, and move on.

                  One thing you must learn is never to worry about things you have no control over, they will or will not happen wether you worry or not.

                  Best Wishes.

                  Mark

                  Comment


                  • #10
                    .

                    'Mom'...thank you very much for the answer. Someone told me : the TC is sometimes 80% a 'mental disease' ! Indeed, if I could completly ignore the TC trauma.....
                    Maybe a memory reset However, I HAVE to do something because I see all in dark and I'm hopeless. The first steps could be: to accept I'm a TC survival, to accept I'm a CANCER PATIENT [.....CANCER!!!!!] and trying to live as normaly as I can. Nothing can be like before and sometimes I remember the happy days before TC. But...it's our destiny !
                    At the end : thank you very much and I'll post you the Friday checkpoint results.


                    Adrian
                    Last edited by AdrianB1971; 03-13-06, 12:12 PM.
                    2005-03
                    Stage III EC 85% + Sem 15%
                    AFP=2.6; HCG=10, 20,28 and rising
                    FULL CAT scan:
                    -abdominal lymph clear
                    -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
                    4 x BEP changed to 3 x BEP at my request
                    from 2005-05....Surveillance

                    Comment


                    • #11
                      Adrian,
                      You say that if you were told you were cured all the problems and dark thoughts would end. I bet they would not end but that you would shift to worry about other potential lurking cancers and illnesses. I've been there, done that. You should seriously consider speaking to a Dr about your feelings...which sure sound like depression to me. That IS something you can take control over and improve your enjoyment of life. I didn't realize how depressed I was was until I finally realized seeking help wasn't a sign of weakness and went to a shrink. When my husband was diagnosed wit TC, I was able to be strong and aggressive with his treatment, look for the positive and be hopeful going forward. Six months ago I would have had a breakdown. Please. please, please don't permit this to take joy out of your life.
                      Last edited by Karen; 03-22-06, 12:12 AM.
                      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

                      Comment


                      • #12
                        Adrian,
                        I noticed in previous Avatar that you're a Musician. I've been playing guitar since High School and like to Muse a bit. I wrote this after my diagnosis and then about a year later after the death of a friend from colon cancer. Don't you just hate that word! Anyway, I've had a fair amount of demons keeping me awake at night since all of this as well. I'm taking things more day to day now, and as the title states "All Right Now". I'm really going out on a limb sharing what lurks in my brain, so I truley hope in some way it connects and helps. Best of Life to you,
                        TCLEFT
                        Here goes:

                        All Right Now

                        Ain’t Life a Funny Ride?
                        It can slide you side to side
                        Can make your bones shake and rattle
                        So please be careful on the saddle
                        Cause the life you once knew
                        May be departed from you

                        Still the key here is to adjust
                        But only as much as you must
                        It ain’t the cough that carries you off
                        It’s the coffin they carry you off in
                        So please don’t be afraid to laugh
                        It’s wisdom’s truest path

                        And I can still look around me
                        I’ve never been a trend setter
                        It’s bad, but I think it’ll get better
                        And I can still smell the roses
                        All the flowers still look pretty
                        Even when the orchids get sh*tty


                        And for those who’ve gone before us
                        A tear goodbye in mournful chorus
                        With just a moments reflection
                        To genuflect life’s inspection
                        So please don’t be afraid to cry
                        Just don’t waste you time asking why

                        And I’m still looking around me
                        Don’t recall ever being first
                        But it can’t get no worse (can it?)
                        And I can still place the roses
                        And though the thorns hurt my fingers
                        These memories still linger


                        Ain’t Life a Funny Ride?
                        It can slam you side to side
                        But don’t let your demons confine you
                        While there are those who’ll remind you
                        Cause the life you once knew
                        May be departed from you
                        I Love My Pack!

                        sigpic

                        Comment


                        • #13
                          The thought of reoccurence bothers us all!!!! I,m dealing with this also!!! The images of me sitting in a hospital bed , in intensive care ,with heart monitors,TPN,Chemo,Cathader, 4 seperate IV lines,Unable to get out of bed, Weighing 131 lbs(down from 210lbs)being told that my kidney is shutting down and I,m turning septic -Having tubes installed into my kidneys so they could drain-while getting Salvage chemo,blood transfusions and plattlets and being shot-up with 8 mg of morphine per hour, being told buy several surgeons that nothing more could be done for you so where going to start you on anti depressants and more pain meds to make you comfortable(while your dying- Those words weren't spoken but I could read between the lines)-- All of this happened in 1 day while my wife, Daughter(7 at the time) and son 5(at the time) were all in the room with me--My kids kept asking me if I was coming home tomorrow... At the time I didn't think I would ever be going home...the fear of never seeing my wife and kids again truly marked me for life... I think of this daily, several times a day, It scares the hell out of me!!! I can't stand the fact that I might have or get cancer again!!!!!! I also beleive that all of these events gave me the strength to pull through an illness that was beyond the piont of being cured according to the experts!!! I can't do hardly any of the thing I used to do with my kids, I can't be nearly as active as I used to, I was a diver in the US Navy(long before TC)- I can never dive again.. This disease has taken many thing away from me-- I consider myself half the man ,physically, that I used to be, But 10 times the man mentally!!!!! You have to reinvent yourself!!! Live for the things that YOU enjoy and the things that make YOU happy!!! If you have a reoccurence..You'll beat it!!! You already know how to do that!!! And you'll do it again..Not because you want to..Because you have to...Deal with reoccurence when the doctor say " I'm sorry Adrian but you have cancer again". Until you hear the words and this fact is confirmed ,you need to move on from what this disease has done to you... you have already beat cancer , yet you continue to let it ruin your thinking and your life.... It's O.K. to worry--It's human-- I worry because I would have to do High-dose with Bone Marrow because I've already had Salvage and the RPLND.. You have many more options than I have to beat cancer ,IF you need to, in the future.... You need to control your life , Not cancer.... Your right , life will never be the same again--Life is only going to be as good as you make it!!! Best of luck to you!!!! I hope you get good results on Friday!!! If you do that means it's time to move on!!!!! 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--

                          Comment


                          • #14
                            you got that right Don. you have to make it happen. you are in control. each person's story motivates me, and I could envision every bit of what you just illustrated while you were in the hospital. we'll pull through. it's the mental part that is the challenge.
                            Age 33, Right I/O Mar '05, 90% embryonal, 10% teratocarcinoma, Surv until 4 mo CT (+), 3 x BEP Aug/Sep '05, CT 10/05 ok, CT 2/06 ok, CT 3/06 ok, CT 6/06 ok, X-Ray, Blood 8/06 ok, Sperm Count 09/06: Low but active, CT 10/06 ok, X-ray 12/06 ok, CT 02/07 ok, X-ray/blood 4/07 ok, CT 6/07 ok, X-ray/blood 09/07, CT 10/07 ok, CT 4/08 ok, CT 10/08 ok

                            LAST NIGHT I DREAMT 1000 LIES
                            I CAN SEE THE DAWN
                            THROUGH A DIFFERENT SET OF EYES

                            Comment


                            • #15
                              a little better

                              Don, indeed your are a hero. Really !! I simply cannot imagine how you felt going thru this experience.
                              The big good news for me is that the persistent severe low back pain has almost disappeared !!! And the anxiety too

                              Back in time, yes I was musician [proffesional hobby my job is software engineer but I really love electronic music]. I still have a home studio and the old friends are pushing me to restart to compose songs. Maybe I will, but for moment I dont have enough strength and my mind is not prepared for that. Still the TC experiance is alive in my thoughts and when I'm beginning to forget...I have to undergo thru another surveillance checkpoint and so on.
                              I'll try to steal a little courage from you guys.

                              Now, about antidepressive medication, maybe I'll consider it but I'm convinced that is no need it. I bealive the one should avoid this medication until it's absolutely necessary. Oh, no, I forgot !!! A glass of wine, maybe two, is the best antidepressive medication as I know. And it works

                              Finaly, about life and death...
                              3 days ago on 9 March, a beatiful pop-rock singer girl has died in a horrible auto accident together with her future husbend and 3 months unborn child . It was a true tragedy. She was only 38 and her future husband 36. She was waiting many years a baby and when she finally succeded her life was brutaly ended.
                              Now she's in haven together with her lover and their child.

                              Just for photos....


                              So, maybe I should be very happy because I'm alive and still have a near normal life.

                              Thank you guys for your thoughts... I'm already feeling better and ready for blood test on Friday.

                              I wish you all the best
                              2005-03
                              Stage III EC 85% + Sem 15%
                              AFP=2.6; HCG=10, 20,28 and rising
                              FULL CAT scan:
                              -abdominal lymph clear
                              -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
                              4 x BEP changed to 3 x BEP at my request
                              from 2005-05....Surveillance

                              Comment

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