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  • My 23 year old son has just been diagnosed

    I'd like some information on what we need to do next.

    My son had surgery on Tuesday to remove his rt testicle. He had a CT Scan and it revealed 2 affected lymph nodes in his abdomen. The pathology report indicated 100% Embryonal Carcinoma. We are from a very small town in Texas and he is currently being treated by a Urologist. The doctor has advised that we wait and run more blood tests on 2-17-06. I would like to know if we should be seing an Oncologist at this point.

    He does not seem to want to know very much about what is going on or what comes next. Is this normal? What should we do?

    The other problem we have is that he was not working at the time and has no insurance. Any advise on this issue would help.

    Thanks for any help.
    Last edited by discodolly; 02-04-06, 02:02 PM. Reason: Adding to Message

  • #2
    Welcome to the forums! Although some people do prefer not to know all the details, I prefer the Lance Armstrong Foundation's motto, "Unity is strength, knowledge is power, and attitude is everything."

    The first thing he needs to know is that testicular cancer is nearly always cured when it's caught early, and usually even in advanced cases.

    He should definitely be talking to an oncologist now, and reading up here and at the Testicular Cancer Resource Center.

    As for the insurance problem, don't let that be a barrier to getting the treatment he needs. Check this thread for some suggestions.

    Best of luck, and keep posting here with updates and more questions!
    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


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    • #3
      If lymph node involvement has been positively identified by CT, I fail to see the need for just another blood work on Feb 17. Even given recuperation reqs after the I/O, your son could be well into systemic treatment ("chemo").

      What's your urologist's reasoning? And yes, get an oncologist involved; preferably one who has had previous exposure to TC.

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      • #4
        Originally posted by discodolly59
        2 affected lymph nodes in his abdomen.
        100% Embryonal Carcinoma.
        Hi discodolly59.
        Sorry to hear this, but don't wory, your son will be fine.
        I had a somewhat similar thing going on inside me last year and after a biopsy from the enlarged lymph nodes that showed that the cancer had really spread, I had 3 series of the standard TC chemo called BEP (Bleomycin, Etoposide and cisPlatin).
        Just today I got the message that 7 months post-chemo the CT scan, lung X-rays and blood test are all clear.
        And I feel fine too, so even if your son has to down the chemo road, he will also be fine.

        Expert medical help is essential. Don't wait around to long. A TC experienced oncologist is the next step.

        Best wishes
        Jens
        Embryonal carcinoma, stage II,
        3 x BEP, apr - june 2005
        Surveillance

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        • #5
          Thanks for getting back to me. I plan to call his Urologist today and ask to refer us to an Oncologist. I will keep you updated on his progress.

          He read of Jeff's experience with TC on TC Experience and it seem to be like what he is looking at. He is scared but has a good attitude.

          Thanks again,
          Disco

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          • #6
            if the lymph nodes are smaller than 2 cm it's possible that RPLND will be performed and no chemo at all.I would not "rush" into chemo if number of lymph nodes is smaller or equal than 3 and size less than 2 cm ....dont rush , get as mush info as possible.
            2/18/05 I/O , 90% embryonal carinoma , 5% yolk sac , 5% Teratoma , RPLD 3/7/05 , 3 nodes < 5mm , AFP 2 , hcg < 2 , IIA non seminona, Surveillance...

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            • #7
              The trouble with embryonal carcinoma is that it can skip the lymph nodes and go straight to the lungs, so RPLND may not be the best primary treatment. (See this thread for previous discussion on this topic.)
              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


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              • #8
                Update

                We went to see his Urologist on Monday and found out the incision from his surgery had become infected. Went back into the hospital Tuesday morning so they could open it up and clean it. Today we were shown how to replace the gauze 2 to 3 times per day. Right now this is very painful for him. I asked his doctor about the Oncologist and he told me that we are waiting to check his levels to see if he will need the RPLND first or chemo first.

                There have been a couple of comments about this moving to the lungs. When they did the CT Scan it had not moved to his lungs so maybe we are in the clear there. I am sure that they will do another one once he sees the Oncologist since it is my understanding that this type moves and grows very quickly.

                We don't have any appointments until the 17th so maybe we will both be able to get some rest.

                Thanks for all the advice.
                Debbie

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                • #9
                  Originally posted by discodolly59
                  I asked his doctor about the Oncologist and he told me that we are waiting to check his levels to see if he will need the RPLND first or chemo first.
                  Hi Debbie.
                  Sorry to hear about the infection, I hope it gets better very soon.
                  I don't quite understand why you need to wait for anything before you see the oncologist. The main thing here is to get expert treatment and not some local docs best shot in the dark. Really!
                  And a blood test for tumor markers should come back within hours.

                  Best wishes
                  Jens
                  Embryonal carcinoma, stage II,
                  3 x BEP, apr - june 2005
                  Surveillance

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                  • #10
                    I would get the oncologist visit scheduled right away. Typically, the urologist's job is essentially over once the surgery is complete, and the oncologist takes it from there, even if the choice is surveillance rather than active treatment.
                    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


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                    • #11
                      I don't understand the wait either. He should also think about banking sperm. 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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                      • #12
                        I have thought about sperm banking. Not sure how this will work due to the no insurance issue. We will have to wait and see.

                        Debbie

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                        • #13
                          With insurance being an issue I would focus on making sure your sone gets proper medical treatment. Sperm banking is a good thing to do but sterility is not a given after chemo, he may very well be able to have his own children when this is all done.
                          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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                          • #14
                            I certainly understand what you are feeling right now. Your head is probably spinning! You are not too far - have you considered trying to get into MD Anderson in Houston. You can self refer there, and there may be a Cancer Center in Austin. What we found helpful is that the Urologists and Oncologists work together there. My son had an RPLND in October. He had stage 1, non-seminoma 100% embryonic carcinoma. Turned out no lymph nodes were affected.
                            Son (21) Diag 8/26/05;non-seminoma stage I;embryonal carcinoma; right I/O 8/29/05;RPLND 10/21/05

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                            • #15
                              Just came back from taking a short vacation. We thought that this would be a good time since we have an idea that it may be awhile before we can do this again.

                              Eric had blood work done yesterday and we should have the results by Tuesday or Wednesday. We will be glad to have the waiting game over and know what we are facing first.

                              The infection has cleared up but it was very difficult changing the dressing at first. I know it was hard on Eric but it was also very hard for me. It is difficult as a Mom to see your child in so much pain and not be able to do anything about it. He frame of mind is much better but he has little energy.

                              MommaBeth - have heard of MD Anderson but are hoping that we will be able to get taken care of at University Hospital in San Antonio since it is alot closser.

                              Will let you all know what we find out.

                              Thanks,
                              Debbie

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