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  • Questions to ask at First Oncologist Visit

    As you all know Don has his first oncologist visit tomorrow. Since most of you have been to that visit already, can you please tell me what questions you suggest we ask?

    We know to ask:
    What kind of tumor is it?
    What all does the pathology report explain?
    What are the treatment options?
    What's next?

    I know some of these are probably already going to be answered automatically, but we want to make sure to cover all the basis. Any and all help would greatly be appreciated.

    In case you are wondering what the pathology report said, here is the link to the thread that I posted it on.
    http://www.tc-cancer.com/forum/showthread.php?t=16744

    Any and all help is very much appreciated. As we are extremly nervous and under a lot of anxiety.
    Thank you so much ahead of time
    Codi
    Codi wife to Don
    Don diagnosed 10-6-11
    Right Orchiectomy 10-6-11
    Pure Seminoma with extensive vascular invasion
    Stage 1B
    Tumor is 3.0 x 2.4 x 2.4 cm
    Tumor Markers BHCG and AFP normal, LDH 172
    Chest X-Rays and Abdominal CT Scan 10-12-11 Clear
    Chest and Brain CT Scans 11-4 Clear
    Chemo, 1 dose of Carboplatin 11-9-11
    Post Chemo labs, 11-17-11, Look Good
    1-29-12, All Clear
    6-11-12 Labs look good, Scans three enlarged lymph nodes in the abdomen
    10-24-12 Surveillance on lymph nodes
    sigpic

  • #2
    Sorry you're here, Codi, but I'm glad that you found us.

    Here is a great resource for you, that goes through all the various stages, options, AND has a list of questions to ask your various doctors at the various stages of treatment: http://tcrc.acor.org/quest.html

    I printed that out and took it with me to all of my husband's appointments, and made an extra list of questions just for us. Remember to ask about potential side effects of the various treatment options, recovery times, risk factors particular to your husband, etc. For example, some men are not recommended to receive bleomycin as part of chemo for various reasons, including prior lung-related issues, so that would be important to ask about. Also, ask about PRE-testing before chemo for certain things. For example, regardless of your husband's lung history, they should set him up for a pulmonary function test to ensure that he is a good candidate for bleomycin. Also, if he's going to receive chemo, ask for information about chemo ports (which are nifty little things surgically inserted into your chest), especially if your husband hates needles. This will prevent him from having to get a new IV every day. But, again, there are various risk factors for ports, as well, that you would want to discuss with the oncologist. My husband did get the port, and he was very happy with it. It's totally weird-sounding--well, it IS weird--but really does save their veins.

    Anyway, I would use the acor question list as a starting point, and then add in your questions that are particular to your situation. Remember to ask about sperm banking, too!

    Hope this gives you a starting point. Best wishes to you and your family.
    Kat
    sigpic_______________________________________________
    Caregiver
    DX 5/15/09
    Left orchiectomy 5/22/09
    60% embryonal, 40% seminoma, w/ VI, LI, T2 (CS-IB)
    CTs clear, X-rays clear, blood markers normal
    L-RPLND 7/14/09, San Antonio
    3 nodes positive, 100% embryonal, N1 (PS-IIA)
    2 rounds BEP August 24, 2009, Austin
    Enlarged lymph nodes Oct 09, Dec 09, Jan 10, Apr 10
    All clear 10/01/10

    Comment


    • #3
      Okay, I should have read your other post first, sorry. You NEED to get that second opinion on the pathology report before you can make a decision about treatment. You do NOT want to treat your husband for seminoma only if he has embryonal in the mix. And you don't want to treat him for embryonal if it isn't necessary. So, the first question you have to ask of the oncologist is if the second pathology report came back yet. And if the the second pathology report ALSO says they don't know if there is embryonal in the mix, then you do need to send it off to Duke. We got a second opinion on my husband's pathology report simply because where we live doesn't have as high a volume of TC cases and we wanted to make sure people knew what they were looking at. There is absolutely NO shame in asking for multiple opinions on these things. The important thing is to do it quickly, as your husband should elect a treatment option within 6 weeks of the I/O.
      So, ask about that second path report! And then ask all those other questions, too. :-)
      Sorry for not reading the other long post first! I'm very tired! I'm sorry!
      Best wishes,
      Kat
      sigpic_______________________________________________
      Caregiver
      DX 5/15/09
      Left orchiectomy 5/22/09
      60% embryonal, 40% seminoma, w/ VI, LI, T2 (CS-IB)
      CTs clear, X-rays clear, blood markers normal
      L-RPLND 7/14/09, San Antonio
      3 nodes positive, 100% embryonal, N1 (PS-IIA)
      2 rounds BEP August 24, 2009, Austin
      Enlarged lymph nodes Oct 09, Dec 09, Jan 10, Apr 10
      All clear 10/01/10

      Comment


      • #4
        Kat thank you so very much for your help! I truly appreciate it.I am sorry we are here too, but in the short experience thus far we have had, the support that is felt here is amazing. If we have to be in this boat, it is nice to have a strong support system, even if it is via online.

        We were told that the oncologist would have the second opinion by this morning. So we shall see. Your link was extremly helpful. I think we are ready to face this...Trying to get them big girl boots of confidence on But we are ready to find out what is next and not let this dictate our lives more than it has and will.

        After reading your information here it sounds like he and I really did not know what to ask.
        Codi wife to Don
        Don diagnosed 10-6-11
        Right Orchiectomy 10-6-11
        Pure Seminoma with extensive vascular invasion
        Stage 1B
        Tumor is 3.0 x 2.4 x 2.4 cm
        Tumor Markers BHCG and AFP normal, LDH 172
        Chest X-Rays and Abdominal CT Scan 10-12-11 Clear
        Chest and Brain CT Scans 11-4 Clear
        Chemo, 1 dose of Carboplatin 11-9-11
        Post Chemo labs, 11-17-11, Look Good
        1-29-12, All Clear
        6-11-12 Labs look good, Scans three enlarged lymph nodes in the abdomen
        10-24-12 Surveillance on lymph nodes
        sigpic

        Comment


        • #5
          Yeah, the whole experience makes you feel a bit batty all the time. But, you do it, you get through it, and it feels like an out of body experience the whole time---but, you just do it, ya know?

          I failed to mention: a notebook. Or, in our case, an accordion portfolio. You want to ask for copies of each blood test, each path report, each scan report, and keep them all in one place. You also want to take a notebook and a calendar to each appointment. It is absolutely impossible to remember all the things you are supposed to remember, because, again, batty-brain, and then you can peruse things later on when it's not such a high-pressure situation as sitting in a doctor's office.

          If your husband turns out to have embryonal in his tumor, sounds like he's in quite a similar spot as my husband was---no evidence of spread to lymph nodes, but does have the L/V invasion. My husband ultimately ended up with 2xBEP (because he did have microscopic spread to lymph nodes). The way it works is that on Mondays, he receives all three--bleomycin, etopiside, and cisplatin. Then on Tuesday-Friday, he receives just the etopiside and cisplatin. Then, the second week, just bleo on Monday. Then, the third week, just bleo on Monday. That is one "cycle." Wash, rinse, repeat. ;-) So, my husband had two cycles, totaling 6 weeks of chemo. So, three cycles would be 9 weeks of chemo. So, if your husband DOES have embryonal in his tumor, but does NOT have visible spread to lymph nodes, they'd likely recommend 2 or 3 rounds of BEP. If he has pure seminoma, they would likely recommend either radiation (as previously mentioned, not used as much anymore) or 1 or 2 shots of carboplatin, and then on to surveillance. Of course, they may recommend (or he may prefer) going straight to surveillance and waiting to see if it pops up in his lymph nodes or not. One way or another, he will get through this, and so will you. :-)

          Let us know how the appointment goes, and what the second path report says!

          Best wishes,
          Kat
          sigpic_______________________________________________
          Caregiver
          DX 5/15/09
          Left orchiectomy 5/22/09
          60% embryonal, 40% seminoma, w/ VI, LI, T2 (CS-IB)
          CTs clear, X-rays clear, blood markers normal
          L-RPLND 7/14/09, San Antonio
          3 nodes positive, 100% embryonal, N1 (PS-IIA)
          2 rounds BEP August 24, 2009, Austin
          Enlarged lymph nodes Oct 09, Dec 09, Jan 10, Apr 10
          All clear 10/01/10

          Comment


          • #6
            Thanks Kat!

            We thankfully have remembered to get copies of all his scans, etc. They did give us a copy of the first pathology report again when we asked for a copy of the second opinion today So when we go back on Friday, I have to ask for copies of the correct one yet again, as I now have three copies of the first path report.

            I will be posting in the treatment section of this forum what happened today. So that it does not get put in the wrong section.
            Codi wife to Don
            Don diagnosed 10-6-11
            Right Orchiectomy 10-6-11
            Pure Seminoma with extensive vascular invasion
            Stage 1B
            Tumor is 3.0 x 2.4 x 2.4 cm
            Tumor Markers BHCG and AFP normal, LDH 172
            Chest X-Rays and Abdominal CT Scan 10-12-11 Clear
            Chest and Brain CT Scans 11-4 Clear
            Chemo, 1 dose of Carboplatin 11-9-11
            Post Chemo labs, 11-17-11, Look Good
            1-29-12, All Clear
            6-11-12 Labs look good, Scans three enlarged lymph nodes in the abdomen
            10-24-12 Surveillance on lymph nodes
            sigpic

            Comment

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