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  • I Am Wondering...

    i dont know why i am about to ask this question, but it just came to mind.
    Brian is continuing to do great with everything! but, i wonder, there are some people on this website who have had advanced stage desease, but i have never seem a post from someone who had had it in their lungs and liver!? that scares me, does that mean that they are not around to discuss their story? i feel like i am the only one who discussed liver surgery and lung surgery after treatment of testicular cancer. i am afraid that there has not been many patients who recovered from metasteses that bad? and there are some people that make posts for their loved ones, and they too had mets that bad, but their signature states that their loved one passed away. am i making sense?

    Dawn
    Fiance Brian, dx:stage IIIC non-sem 4/18/07
    mets to lungs,liver,abdomin,large tumor near kidney
    hcg was 176,000!
    completed 1 rnd of TIP(had bad reaction to taxol)
    BEPx3 until 7/13/07
    7/26/07 post chemo ct-scan shwd shrinkage & fewer lung tumors
    10/17/07 @ MSKCC Liver FREE of cancer! necrotic & small focus of teratoma.
    AFP & HCG normal
    12/7/07 RPLND,right orchiectomy @ MSKCC
    12/18/07, rcvd pathology,all clear! no cancer!
    2/11/08 -Lung surgery dne @ MSKCC
    ALL CLEAR

  • #2
    Originally posted by DAWN82
    i dont know why i am about to ask this question, but it just came to mind.
    Brian is continuing to do great with everything! but, i wonder, there are some people on this website who have had advanced stage desease, but i have never seem a post from someone who had had it in their lungs and liver!? that scares me, does that mean that they are not around to discuss their story? i feel like i am the only one who discussed liver surgery and lung surgery after treatment of testicular cancer. i am afraid that there has not been many patients who recovered from metasteses that bad? and there are some people that make posts for their loved ones, and they too had mets that bad, but their signature states that their loved one passed away. am i making sense?

    Dawn

    Mets Mediastinal Lymph nodes surrounding my trachea/esophagus/aorta. Mets to Liver and pancreas. Still here m'dear. Keep positive!
    I Love My Pack!

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    • #3
      Hi Dawn, Yes you are making sense. Russell had mets into the lungs. In fact, they cannot remove the remaining lesion because of the Bleomycin Toxicity. He cannot have oxygen at the levels they would want to give him with thoracic surgery. His 7 1/2 hour RPLND was done on room air level oxygen!! Kind of worrisome knowing that the ultimate goal is to remove everything. I think that a lot of people end up with lung involvement, it just sort of gets grouped with the whole picture. Although the cancer remains the same, each body system needs to be dealt with and treated differently. They consider the organ, it's treatment and as well what treatment to that specific organ will do to other body systems that it is related to. Hang onto how much of his body "is" working. It is almost mind boggling!!! Take care, Sharon
      PS My personal opinion, it is always best to ask questions...there are no stupid questions...it is not wise not to ask a question...better to know. When you know, the thoughts quit running around in you mind like spilled ping pong balls!!
      Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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      • #4
        Hi Dawn,
        Unrelated story but you will understand when I am finished. My wife and I are trying to have a second child. We have been trying for 12 months already to no avail. Our first child took 18 months to conceive. I think we have had every test in the world and still no reason can be found for our fertility problems. We were at doctors office yesterday discussing our current plan for this month and my wife asked what will we do next month. The doctor smiled and I said try thinking positive, we will worry about next month when and if it comes. The doctor was thinking the same thing.

        I know its hard not to worry but if Brian is doing well enjoy the moment. Remember every case is different and you cannot judge Brian's case on that of others whether the outcome for the others was good or bad.
        If you look for the truth outside yourself, it gets farther and farther away. ~ Tung-Shan
        If you love life, don't waste time, for time is what life is made up of. ~ Bruce Lee
        Please sponsor me for the 2011 LiveSTRONG Challenge Philadelphia.
        My Blog

        Diagonosed 1988. Left I/O - 3 rounds of chemo
        Relasped 1989. RPLND - 3 rounds HDC - Bone Marrow transplant.
        There is Army Strong, There is Live Strong and then there is me. Crazy Strong

        Comment


        • #5
          Originally posted by Jay68442
          Hi Dawn,
          Unrelated story but you will understand when I am finished. My wife and I are trying to have a second child. We have been trying for 12 months already to no avail. Our first child took 18 months to conceive. I think we have had every test in the world and still no reason can be found for our fertility problems. We were at doctors office yesterday discussing our current plan for this month and my wife asked what will we do next month. The doctor smiled and I said try thinking positive, we will worry about next month when and if it comes. The doctor was thinking the same thing.

          I know its hard not to worry but if Brian is doing well enjoy the moment. Remember every case is different and you cannot judge Brian's case on that of others whether the outcome for the others was good or bad.
          Jay, I really like what you wrote. That's exactly what I have to do. Worry only about today right now and worry about tomorrow when it comes. I believe that's how I stayed strong this whole time. I live one day at a time, sometimes even minutes at a time. If I thought ahead any, I would overwhelm myself.

          Comment


          • #6
            Mets to lungs, liver, and BRAIN

            My husband had it all. He is still alive and fine. I just do not read or post here often becasue I am tired of TC and talking about it. We just want to move on and reading this sometimes brings back bad memories. Frankly we are done with TC. As my husband said the other day "I cannot wait for the day when nobody knows I had cancer and it is not talked about."

            Erin
            Erin (caregiver)
            Hubby Stage IIIC Diagnosed 10/27/05,
            HCG 512,000 AFP 636 LDH 1012, I&O 10/28/05
            1 x EP, 2 x VIP, then 2 x BEP (10/31/05-1/06)
            Sterotactic Radiation to two brain tumors 12/05
            Sterotactic Radiation to new brain tumor 4/4/06
            Whole brain radiation 4/15 -5/18/06
            Tandem High dose chemo and stem cell 6/5/06-7/31/06 - markers normalized
            RPLND with 9cm x 24 cm abd mass removal 9/14/06 - Only teratoma and necrotic tissue removed
            Currently on surveillance

            Comment


            • #7
              Originally posted by ebfun7
              Frankly we are done with TC. As my husband said the other day "I cannot wait for the day when nobody knows I had cancer and it is not talked about."
              I can respect that. People deal in different ways. We'll be here if and when you need us.
              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!

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              • #8
                Thanks

                Thanks Scott. Very sweet!
                Erin (caregiver)
                Hubby Stage IIIC Diagnosed 10/27/05,
                HCG 512,000 AFP 636 LDH 1012, I&O 10/28/05
                1 x EP, 2 x VIP, then 2 x BEP (10/31/05-1/06)
                Sterotactic Radiation to two brain tumors 12/05
                Sterotactic Radiation to new brain tumor 4/4/06
                Whole brain radiation 4/15 -5/18/06
                Tandem High dose chemo and stem cell 6/5/06-7/31/06 - markers normalized
                RPLND with 9cm x 24 cm abd mass removal 9/14/06 - Only teratoma and necrotic tissue removed
                Currently on surveillance

                Comment


                • #9
                  Originally posted by Scott
                  I can respect that. People deal in different ways. We'll be here if and when you need us.
                  Wanna hear something odd...I feel like I want EVERYONE to know Boyce has cancer. People think that because he is done with his RPLND and Chemo that he does not have anything to worry about and they are glad the cancer is "all behind us". But I still feel like we have worries with the scans and blood work...I still worry with the DVT and future health worries. I still need to talk about it, but everyone else has moved on. Our family has put it behind them like last years flu.

                  Glad I have the family here.
                  Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                  Current DVT
                  Current testosterone replacement therapy, Testim.

                  "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                  Comment


                  • #10
                    Dawn,
                    my boyfriend had 12 mets in lung, after 4 x BEP he had two spots in lung but now are disappered..I understand your fear, but your boyfriend and you are strong...

                    sorry for my english, i'm italian

                    Love Rosy
                    Right I\O 11/28/06 - 100% EC with vascular invasion - CT shows enlarged abdominal lymph node (30mm) and 12 small lung nodules (the bigger 13mm) - Chemo started 01/02/2007 - 4xBEP - end 03/22/2007 - 03/22/2007 tumor marker normal - 04/23/2007 CT shows two small lung nodules (3mm and 4 mm) and lymph node 12mm - 05/23/2007 tumoral marker normal - 06/06/07 CT is stable - 07/23/07 tumoral marker normal - 08/02/2007 CT-PET shows all clear - On surveillance from 08/04/07

                    Comment


                    • #11
                      Margaret -

                      I feel the same way you do. Saturday night at dinner Rob said he is tired of being looked at as a "science experiment." He said he knows every time he sees someone, the first word that comes to their minds is cancer, and he wonders how long it will take for them to not associate him with that word. I told him, it just happened!! We're not even out of the woods yet, and he wants to put the whole thing behind him. I see it as a totally life changing experience that is still affecting our lives.

                      I wonder if he's in a denial or depression or something. Or if he very truly wants to pretend it never happened.
                      Rob and Stacy
                      DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9

                      Comment


                      • #12
                        Originally posted by Margaret
                        People think that because he is done with his RPLND and Chemo that he does not have anything to worry about and they are glad the cancer is "all behind us".
                        Originally posted by sldl1106

                        I wonder if he's in a denial or depression or something. Or if he very truly wants to pretend it never happened.
                        Margaret and Stacy

                        I am very much right there with you too...on both issues. My husband would like to pretend it never happened. He doesn't want to have learned anything from it or use his experiance to better man kind or start anything. He just wants to forget about it. He has said several times he wishes people would stop caring so much, it actually bothers him.

                        And while our church was absolutly wonderful while he was going through chemo as soon as he told him his PET came back clear after chemo they all declared him cancer free. Now people talk to us with "I am so glad his cancer is gone" and "I am so glad you all are done with all of that". It is far from being "far behind" us. We are still knee deep in it.

                        Now granted because my husband doesn't like to talk about it, only family and a very few closer friends (of mine, not his) know what we are still dealing with and the possibilty of surgury. Sad thing is it will most likely break the hearts of a few people in our church who were so certain we were done and gone with cancer.

                        I am not sure why so few people accept it is a life time thing. Even after 20 years there will still be that linger chance and fear. Not to mention all of the long term effects of chemo and RPLND's.

                        But hey, we are young and we are going to stay strong, right ladies?!


                        Becki

                        Husband Right I/O 09/06
                        -70% Embryonal Carcinoma
                        -20% Teratoma
                        -10% Yolk Sac Tumor
                        11/06- lymph nodes 1.8x1.4 and 1.9x1.4
                        12/06-PET Scan confirms activity in lymph nodes, lymph nodes 2.2x2.2 and 2.4x2.3
                        1/07-Start 3xBEP
                        4/07-PET clear, lymph nodes down to 1.1x0.5 and 1.8x1.0
                        6/07-lymph nodes 1.2x1.0 and 1.9x.9
                        8/07-lymph nodes 1.1x1.0 and 2.0x1.2
                        10/07-lymph nodes 2.0x1.5 and 2.7x1.8
                        11/07- PostChemo LRPLND-found burnt out teratoma
                        11/09-Enlarging lymph node 1.2 cm near renal veins

                        Comment


                        • #13
                          Originally posted by sldl1106
                          Margaret -

                          I feel the same way you do. Saturday night at dinner Rob said he is tired of being looked at as a "science experiment." He said he knows every time he sees someone, the first word that comes to their minds is cancer, and he wonders how long it will take for them to not associate him with that word. I told him, it just happened!! We're not even out of the woods yet, and he wants to put the whole thing behind him. I see it as a totally life changing experience that is still affecting our lives.

                          I wonder if he's in a denial or depression or something. Or if he very truly wants to pretend it never happened.
                          I don't know Stacy, but I do understand where you are coming from. My husband will "have cancer" until we get to that magic year where I can say "my husband used to have cancer". I am not sure what year post treatment that happens. I am not ready for him to help the neighbor move in his new TV or have him out in the heat all day. I am still treating him with the same care I treated him with while he was in treatment.

                          Or maybe I still need to talk about it, I still feel very full of worry and concern. Maybe as caregivers we allow it to build up and while they are in treatment, they process it. After they are done, they start to put it behind them and we start to deal with it?? I guess I have invaded Dawn's post and maybe this is for the 'caregivers' forum.

                          But as far as I am concerned, my husband HAS cancer and I am just not ready to put it behind me.
                          Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                          Current DVT
                          Current testosterone replacement therapy, Testim.

                          "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                          Comment


                          • #14
                            Originally posted by Margaret
                            I don't know Stacy, but I do understand where you are coming from. My husband will "have cancer" until we get to that magic year where I can say "my husband used to have cancer". I am not sure what year post treatment that happens. I am not ready for him to help the neighbor move in his new TV or have him out in the heat all day. I am still treating him with the same care I treated him with while he was in treatment.

                            Or maybe I still need to talk about it, I still feel very full of worry and concern. Maybe as caregivers we allow it to build up and while they are in treatment, they process it. After they are done, they start to put it behind them and we start to deal with it?? I guess I have invaded Dawn's post and maybe this is for the 'caregivers' forum.

                            But as far as I am concerned, my husband HAS cancer and I am just not ready to put it behind me.
                            Ladies,
                            What your guys "Have" is not only the enemy being beaten into just a bad memory, but a Soul-Mate who is always there for them. I've known folks who've barely had a head cold in their life who can't say that. It's not behind us but who wants to worry about losing a diamond when you can admire how the sunlight catches it's brilliance.
                            I Love My Pack!

                            sigpic

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