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Finally...the 2nd opinion

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  • Finally...the 2nd opinion

    We finally got the coveted 2nd opinion at Vanderbilt today. My husband and I really liked both the doctors that we saw. They spent over an hour with us discussing everything and we were both extremely impressed.

    We were told the staging is pure seminoma pT3 and that radiation is recommended- doglegged due to the tumor spread within the vessels of the cord. The rad-onco here only wants to radiate the pare aortic nodes and disagrees with my husband and I about doglegged. The doctors at Vanderbilt agreed to consult with the rad-onco here if after my husbands next visit with him he still won’t go for the doglegged radiation. The Vandy doctors don’t understand the hesitation on the part of the rad-onco here, and neither do I.

    My husband told me that he understands a lot more now then before. I think that a lot of it has to do with the detail that the doctors took the time to get into with him. I sat there listening to them go over nearly every word that I have been telling him since this whole thing started and I started studying and researching this disease. I told my husband that I would have to get a white lab coat with my name on it and then maybe he will listen to me! It is amazing how much more empowered he seems with his new knowledge. I just don’t know why he couldn’t hear the words from me.

    So now it is on to radiation…does anyone have any suggestions if this doctor still won’t go for doglegged radiation and won’t consult with the Vandy doctors?

  • #2
    My husband had to hear from the doctor's direct as well. Although I was pretty spot on most of the time! Glad to hear the 2nd opinion went well and you now have a plan!
    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


    • #3
      Great work on keeping up with everything! You should feel convinced that you are a great advocate for your husband, and I'm sure everything you said to him stuck around his head. The more you know, the better you'll be able to deal with this (as promptly as possible).
      "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
      11.22.06 -Dx the day before Thanksgiving
      12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.


      • #4
        We got what we asked for!

        My husband called the hospital today and spoke to the radiation tech. The oncologist here has decided that the radiation will be dog-legged. I am so happy that this battle is over and won!

        My husband will have his simulation next Thursday (Feb. 1st) and start radiation on Feb. 5th. I can't wait to get started and finished!


        • #5
          Chris, NO, say it ain't so...I was really looking forward to some kind of manly-looking tatoo...I guess we can always play "connect the dots"

          I have to admit that I would like to hear my husband say thank you to me and I hope that this doesn't sound selfish to anyone. It has just been so exhausting...and add in there the issue with my son now. I need a little encouragement from my family and I am not getting any.

          Thank you all for your words of encouragement!


          • #6
            We had no family support either. They said it was to painful for them to see Jason that sick so they just stayed away and said they didn't want to bother us. I wish at the time I would have told them to suck it up because it wasn't about what they needed it was about what he needed. It was very painful at the time but I have since forgiven them, but our relationships have never been the same. The flip side of that coin is our friends, I would give them the shirt off my back (even the clean ones). They comforted us 24/7.
            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.


            • #7
              My nieces and nephew thought I was cool with all the "sharpie" marks......good luck with everything.
              You may want to check out some other post in the other forums about what to expect during radiation treatment. it should all go smoothly but it will help to know what to expect... if anything!
              All the best,
              diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008


              • #8
                that is great news! Which doctors do you see at Vander? ONe of my husbands doctors are there


                • #9
                  smdemom -

                  Good job. Glad you have an agreed and reasonable plan. And, I am glad that your husband is more empowered by knowledge. Hopefully that will allow him to take a bit more control and understand what will be going on with him going forward.

                  It is easy to downplay RT compared to some of the other treatments that folks on this Forum have to go through, but it is still a major treatment. I certainly hope that your husband is the type that tolerates it well and he recovers quickly afterwards.

                  When he goes in for his simulation, he should have another chance to ask detailed questions of the staff and hopefully the radiation oncologist. Be sure to coach your husband to ask questions relating to what he should be doing during and after his treatment. Don't let him be macho - go ahead and ask for the nausea medication. Ask about what to do if he gets bowel problems. Ask for recommendations on diet and exercise during treatment.

                  Don't let him make the mistake I made - my radiation oncologist didn't give me much information and tended to blow off my questions and concerns. I didn't push. I asked him about exercise - he said take it easy, allow your body to heal. That was bad advice - you need to move and stretch. The radiation will damage the tissues of his body - that is how it works - it damages any cancer cells too, but they don't recover like your body does. But it is important to move - walk, stretch - does not have to be anything strenuous, but you want make sure that as the muscle and connective tissues heal the way they are supposed to do and movement helps.

                  I have had some nagging back problems that are caused by my RT - scar tissue and adhesions (called radiation-induced fibrosis) - that I honestly think would not have occured if I had included a good stretching routine in my daily exercise during and in the months after RT (I pretty much just took walks because I was fatigued during and after RT).

                  Anyway, I don't want to scare anyone, because I am told it is a very, very rare side effect - almost never happens from TC RT because the radiation dosages are so low. But it does happen with other higher dose RT treatments (such as for breast cancer or ovarian cancer) and some of the websites for those emphasise how important stretching and mild exercise is as it helps with healing and reduces the chance for any scar tissue formation. I guess I understand why I wasn't told about this side effect because it is so rare for TC RT - and I am one of the unlucky few that must be either more sensitive to RT or forms scar tissue easily - but I really do think this side effect would have been minimized or avoided if I had included stretching in my daily routine - and I wish my rad onc had recommende that.
                  Right I/O 4/17/06, Seminoma Stage Ib
                  RT (15 days) completed 6/1/06
                  All clear as of 5/8/09


                  • #10

                    thank you for all the good advice.

                    I am trying to get my husband moving and eating right NOW. The doctor at Vandy told him to start eating his fruits and veggies. I will push the exercise issue with him. Years ago, after his apendectomy, he laid around and ended up back in the hospital for 2 weeks with a blood clot and on blood thinners.

                    We checked about the possible side-effects and I think that we are prepared for those. He has his script already for the nausea meds. Hopefully we won't need much of that.

                    Again, thanks for all the great advice!