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  • Only surveillence??

    Hi everyone--

    I got my path report back today and unlike my first battle (4 different types) this time only seminoma was found. I had a tumor 1.2cm with two very small adjacent tumors less than .5cm each. The tumors were in the testicle with no signs of any spreading up the spermatic cord or elsewhere. My urologist said that at this time he only wants to do surveillence. I am concerned b/c after my RPLND I was put on surveillence because of a good path report on the nodes-- four months into surveillence (after a 2 month wait between check-ups) I had tumors in my lungs and had to do a whole lot more chemo than I would have if they would have given me a 2 cycle blast for precautionary reasons. My urologist is presenting my case to the "Tumor Board" at the hospital so I know this will be look at by other doctors including oncologists. I guess I am wondering if anyone has anything suggestions as what I should do besides wait to hear back from the "Tumor Board"?? I don't want another stage III suprise after the wild ride that TC has already given me. Should I write to Dr. Einhorn at IU, I here he is the best and he answers email?

    Thanks everyone--

    Joe
    TC 1
    Right I/O-- 12-5-00 (seminoma, teratoma, embryonal, yolk sak)
    RPLND-- 12-29-00 (All Clear)
    Surveillance
    Recurrence-- 4-22-01 (3 mets in right lung-- biggest 3cm, small met on pancreas, one lymph node enlarged-- 2x normal)
    Chemotherapy-- started 4-30-01, 3xBEP
    Surveillance
    TC 2
    Left I/O-- 7-19-06 (seminoma)
    Hormone replacement therapy-- Androgel
    Surveillance

    Jeremiah 29:11
    Listen to Bob Marley

  • #2
    I would certainly call Einhorn, or have your doctor get in touch with him.
    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


    • #3
      We had our doctor get in touch with Einhorn, who then emailed us directly. His secretary Anne is great too. The number is on the IU Cancer Center website at www.iucc.iu.edu
      Lori and Jon
      Diagnosed 5/22/2006
      I/O 5/26/2006, Stage 3, Good
      Teratoma (Majority), Seminoma (10%), Yolk Sac
      3xEP then determined not working
      HDC w/stem cell transplant 8/16/06 to 9/25/06
      Chest and Neck surgery 10/9/06 - immature teratoma
      RPLND 11/16/06 - immature Teratoma
      2/29/2008 - markers continue to be normal!
      9/16/2008 - released from Dr. Einhorn's care

      Comment


      • #4
        Hi Joe:

        I certainly think it's worth hearing Einhorn's opinion on this. After my second TC, which was a pure seminoma, I also agonized over the decision and in the end opted for surveillance, but at 42, my age was a factor in a lower risk of recurrence, at least according to some studies. My oncologist estimated my personal risk of recurrence at 6% based on my pathology, age, and tumor size. Of course percentages are just a history of other people in similar situations and not necessarily predictive of anyone's individual chances, but unfortunately it's the best we've got.

        I guess the fact that your pathology showed 2 adjacent tumors would give me reason to lean somewhat toward RT if I were in your shoes, but it's never an easy decision.

        Best wishes.
        Fish
        TC1
        Right I/O 4/22/1988
        RPLND 6/20/1988
        TC2
        Left I/O 9/17/2003
        Surveillance

        Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

        Comment


        • #5
          Would the chemo regime differ if you did it now or went on surveillance and did it if needed? I too vote to contact Einhorn..between him and the Tumor Board you should have a good path to follow.
          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

          Comment


          • #6
            Hello All--

            Well, I emailed and got an reply from Dr. Einhorn regarding my case in 14 minutes!! I must have had my timing right. He recommended only surveillance (like my doctor). My doctors will be doing more surveillance than was recommended by Dr. Einhorn, so I feel better about what is going on and can hopefully get some sleep tonight. Dr. Einhorn also said that I have a 90% cure rate with the orchiectomy alone. I will keep updates coming i.e., news from the tumor board.

            Thanks for all of the support and advice it-- has helped me more than I can put in words--

            Joe
            TC 1
            Right I/O-- 12-5-00 (seminoma, teratoma, embryonal, yolk sak)
            RPLND-- 12-29-00 (All Clear)
            Surveillance
            Recurrence-- 4-22-01 (3 mets in right lung-- biggest 3cm, small met on pancreas, one lymph node enlarged-- 2x normal)
            Chemotherapy-- started 4-30-01, 3xBEP
            Surveillance
            TC 2
            Left I/O-- 7-19-06 (seminoma)
            Hormone replacement therapy-- Androgel
            Surveillance

            Jeremiah 29:11
            Listen to Bob Marley

            Comment


            • #7
              Sounds like a good plan!
              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


              • #8
                When it rains it pours!! Drunk driver hit us at 1:30PM!?!?

                Hello All--

                I just wanted to give an update on my condition before my fiance and I were in a car accident caused by a drunk driver blowing a red light!! We were not directly hit by the car that went thru the red but by the car that was smashed and then flew into us. We were stopped at the red and could do nothing but watch as it happened (really fast, but in slow motion at the same time--wierd) Anyways, I think we are okay-- my waitbelt was over my recent, 7-19 L/O, incsion, and I am more tender than I have been in a few days b/c of this. I think I may go to the doctor tomorrow just to make sure I didn't pop any thing, God forbid! Any suggestions-- I should probably go to be safe, right??
                TC 1
                Right I/O-- 12-5-00 (seminoma, teratoma, embryonal, yolk sak)
                RPLND-- 12-29-00 (All Clear)
                Surveillance
                Recurrence-- 4-22-01 (3 mets in right lung-- biggest 3cm, small met on pancreas, one lymph node enlarged-- 2x normal)
                Chemotherapy-- started 4-30-01, 3xBEP
                Surveillance
                TC 2
                Left I/O-- 7-19-06 (seminoma)
                Hormone replacement therapy-- Androgel
                Surveillance

                Jeremiah 29:11
                Listen to Bob Marley

                Comment


                • #9
                  Joe,
                  Wow...glad you and your fiance are OK!!! I'd think your incision would be fine but can't hurt to get it checked anyway.
                  Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

                  Comment


                  • #10
                    I would certainly visit the doctor. A hernia is a very real possibility after an I/O. Keep us posted
                    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


                    • #11
                      Glad everyne is ok won't hurt to see the doctor or to at least give them a call to see if you should come in.
                      All your bad luck is behind you now only good things from here on out .
                      Brian
                      5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07

                      Comment


                      • #12
                        Boy, that really s*cks! I'm glad there don't appear to be any serious injuries. I would recommend you both get checked out, some injuries can take a day or so to manifest. Plus it gives you documentation for insurance claims, etc.

                        As Brian said, your bad luck should be over now.
                        Fish
                        TC1
                        Right I/O 4/22/1988
                        RPLND 6/20/1988
                        TC2
                        Left I/O 9/17/2003
                        Surveillance

                        Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

                        Comment


                        • #13
                          The accident was going to happen. The fact that you were not hurt shows you are one lucky guy. Do get checked out. Your body is probably sore today. 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


                          • #14
                            Can you believe it! When Joe called to tell me about the accident, first of all my knees went weak and then I got angry and thought to myself - "o.k. this is enough! He's had enough!" Joe was feeling alright yesterday, but I'm sure he's going to have some aches and pains as a result. (We could do without any more of those. He's just two weeks postop.) He said he was going to call his doctor and hopefully they'll see him today. My boss feels he's being tested for great things. Well, I think he's passed the test. Let's get on to the great things. Thanks to all of you who have let Joe know that you care and are pulling for him. It means more than I could ever possibly put into words!! Nancy
                            [Co-Survivor - My Son Joe: (RasJoe)
                            TC 1:Right I/O December 5, 2000 (Stage I -seminoma, teratoma, embryonal, yolk sac) RPLND-- 12-29-2000 (Nodes Clear) Surveillance- Recurrence-- 4-22-2001 (Stage III) Chemotherapy-- 4-30-2001, BEP x 3 cycles(successful) - Surveillance

                            TC 2: Left I/O-- 7-19-2006 (100 % seminoma Stage I) - Hormone replacement - Surveillance
                            Joe's Mom - Nancy

                            Comment


                            • #15
                              I just got off the phone with the urology nurse and she said to keep an eye on it-- any increased swelling or other noticable abnormalities, I should call back at any time over the weekend and they will arrange for me to meet with the "doctor on call" probably at the hospital. Other than that I was told to do the usual-- ice and pain pills--and back to the couch. I may end up back at the hospital to get my back/neck checked anyways (sore!), thanks for all the responses--it's good to know I have people pulling for me!
                              TC 1
                              Right I/O-- 12-5-00 (seminoma, teratoma, embryonal, yolk sak)
                              RPLND-- 12-29-00 (All Clear)
                              Surveillance
                              Recurrence-- 4-22-01 (3 mets in right lung-- biggest 3cm, small met on pancreas, one lymph node enlarged-- 2x normal)
                              Chemotherapy-- started 4-30-01, 3xBEP
                              Surveillance
                              TC 2
                              Left I/O-- 7-19-06 (seminoma)
                              Hormone replacement therapy-- Androgel
                              Surveillance

                              Jeremiah 29:11
                              Listen to Bob Marley

                              Comment

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