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    I just spoke with the surgeon we met at U of M and he told me Anthonys AFP is 10.8

    On may 2nd anthony had markers done at the chemo clinic where they have always been done. His AFP was 3.8

    Two days later, may 4th at U of M it is 10.8

    Dr. Hafez said not to worry too much because of the difference from lab to lab.

    Even with the lab difference though, 10.8 is still above normal range, so no matter where its done, it should be within range.

    I just asked U of M to fax the lab report to Anthonys oncologist and they are doing that. They are going to check and see what reference range U of M uses. I don't know that will make any difference since 10.8 is out of range no matter where its done.

    But what does this mean for Anthony? His cancer is not gone?

    More chemo?

    Tammy

    Son Anthony DX 12/11/06
    L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
    4XEP 1/29-4/6/ 07
    AFP started increasing3 wks later
    Residual abdominal mass found on CT
    RPLND 6/8/07
    Cancer in pathology-
    80% mature teratoma, 20% Yolk Sac. --
    No adjuvent chemo and
    AFP normalised

    July 22, 2010 ---- 3 years all clear!

  • #2
    Hi Tammy, I have been thinking of you so much.

    I will offer the little bit I know, but others here may know more.

    First of all, I think I would consider having the numbers drawn again. I have heard from a few people here that labs can be off and you did mention in your post that it was a different lab. You may find out that their 'scale' is just different and he is still in normal range.

    Second, it is my understand that they will want the number to be in normal range before doing an RPLND. I have only worked with 3 people on their numbers before RPLND so keep that in mind. My experience is limited. Others here may be able to tell you if they know of someone that had the RPLND with above normal markers. In our case, we had the markers drawn 2 weeks before sugery and then 2 days before sugery to be sure they were in the normal range.

    I can't offer advice on the chemo question. I can guess that if they want to lower the number before surgery that could be an option, but again, I am unsure. In your shoes, I am sure that is one of the first conclusions I would make as well. "Will they just do another round of chemo, allow the number to drop again, then do the surgery??" But I am very unsure about how to answer this...my advice would be to ask the doctor and see where their heads are.

    The one thing I do know about the markers, is that it can be somewhat normal for them to move slightly. I am sure you will get many responses to your post and with any luck they will all know more than me.

    I know things are going to turn out okay and I hope both you and your son feel a positive outcome is headed your way.

    prayers and hugs,

    M
    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


    • #3
      Originally posted by Margaret
      Hi Tammy, I have been thinking of you so much.

      I will offer the little bit I know, but others here may know more.

      First of all, I think I would consider having the numbers drawn again. I have heard from a few people here that labs can be off and you did mention in your post that it was a different lab. You may find out that their 'scale' is just different and he is still in normal range. I don't know about more chemo or anything they might decide to do. Right now I am praying that it was a bad test and it will still be normal.
      Hi Margaret, good to hear from you and thank you for keeping us in your thoughts.

      Yes their reference range can be different, however, 10.8 is still out of range for any lab to my knowledge. So unless I am wrong, I'm not real comforted by the range difference between labs.

      U of M faxed it to Anthonys oncologist, so he will look at it and let me know if I can bring him to the chemo clinic for another blood test. Actually I will insist on it. Lord this is scaring me to death! I am so thankful to have people I can come to that have experience with this.



      [/QUOTE]

      Son Anthony DX 12/11/06
      L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
      4XEP 1/29-4/6/ 07
      AFP started increasing3 wks later
      Residual abdominal mass found on CT
      RPLND 6/8/07
      Cancer in pathology-
      80% mature teratoma, 20% Yolk Sac. --
      No adjuvent chemo and
      AFP normalised

      July 22, 2010 ---- 3 years all clear!

      Comment


      • #4
        Welcome to the gray area. I've been there before. I believe the way the doctors view it is that your AFP is above normal when it goes over 6, but cancer isn't assumed until it hits 25.

        My AFP bounced up to around 11 in the middle of treatment, which caused me some alarm. My doctor consulted with Indiana University and they all concluded that the 11 was not high enough to prompt additional chemo. But they didn't want to see it continue to increase.

        The next blood draw showed the marker at 5. I believe this type of bouncing around is fairly common at low levels and there are things that can trigger false positives in some people. Hopefully the next time it happens I'll be calmer about it.

        I think you're approach is a good one. Schedule another test sooner rather than later and see if this looks like a trend or just a one time thing.

        Comment


        • #5
          Tammy:
          I know you're scared but lab results can really differ from place to place. Insist on have your regular lab run the tests.
          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


          • #6
            Originally posted by dt22207
            Welcome to the gray area. I've been there before. I believe the way the doctors view it is that your AFP is above normal when it goes over 6, but cancer isn't assumed until it hits 25.

            My AFP bounced up to around 11 in the middle of treatment, which caused me some alarm. My doctor consulted with Indiana University and they all concluded that the 11 was not high enough to prompt additional chemo. But they didn't want to see it continue to increase.

            The next blood draw showed the marker at 5. I believe this type of bouncing around is fairly common at low levels and there are things that can trigger false positives in some people. Hopefully the next time it happens I'll be calmer about it.

            I think you're approach is a good one. Schedule another test sooner rather than later and see if this looks like a trend or just a one time thing.
            Thank you for this! You just gave me a great big sigh of relief. I will try not to let it bother me while Im waiting for the next test (yeah like thats gonna happen, lol) even though it will be hard. But your information at least lets me breathe a little better.

            God Bless YOU!

            Son Anthony DX 12/11/06
            L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
            4XEP 1/29-4/6/ 07
            AFP started increasing3 wks later
            Residual abdominal mass found on CT
            RPLND 6/8/07
            Cancer in pathology-
            80% mature teratoma, 20% Yolk Sac. --
            No adjuvent chemo and
            AFP normalised

            July 22, 2010 ---- 3 years all clear!

            Comment


            • #7
              Originally posted by dadmo
              Tammy:
              I know you're scared but lab results can really differ from place to place. Insist on have your regular lab run the tests.

              Yes we are going to do that. Jenn (from the chemo clinic) said she got the fax and she is flagging it and placing it on dr. danish's desk. I told her to put a note with it to let him know I want the test repeated no matter what. So I will probably be taking Anthony to Dr.Danish on Monday.

              Also, I understand that labs can differ.. but if it's 10.8 that means its elevated no matter who is doing it. It is still out of range. Or is there some other explanation for that?

              Thank you , dadmo

              Hugs,
              Tammy

              Son Anthony DX 12/11/06
              L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
              4XEP 1/29-4/6/ 07
              AFP started increasing3 wks later
              Residual abdominal mass found on CT
              RPLND 6/8/07
              Cancer in pathology-
              80% mature teratoma, 20% Yolk Sac. --
              No adjuvent chemo and
              AFP normalised

              July 22, 2010 ---- 3 years all clear!

              Comment


              • #8
                I know your signature has no teratoma listed but you may want to verify that. According to the American Family Physician teratoma increased AFP in 37% of the patients.
                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


                • #9
                  Originally posted by dadmo
                  I know your signature has no teratoma listed but you may want to verify that. According to the American Family Physician teratoma increased AFP in 37% of the patients.
                  The original path report did not say anything about teratoma. Anthonys oncologist said he thinks the mass is teratoma.

                  I asked him, "wouldnt the original path have shown teratoma if that were present" ?

                  He said the teratoma didnt necessarily have to be in the path report. The EC and yolk sac were in the teste and the teratoma could have been up inside (he waved his hand around the abdominal area)

                  Is that possible?

                  Son Anthony DX 12/11/06
                  L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                  4XEP 1/29-4/6/ 07
                  AFP started increasing3 wks later
                  Residual abdominal mass found on CT
                  RPLND 6/8/07
                  Cancer in pathology-
                  80% mature teratoma, 20% Yolk Sac. --
                  No adjuvent chemo and
                  AFP normalised

                  July 22, 2010 ---- 3 years all clear!

                  Comment


                  • #10
                    The pathology is done in slices and it's quite possible that a small amout of something could be missed.
                    Last edited by dadmo; 05-11-07, 01:16 PM.
                    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
                      Originally posted by dadmo
                      The pathology is done is slices and it's quite possible that a small amout of something could be missed.

                      Ok, well I will try to keep everything posted in mind and focus on getting his treatment done asap.
                      That surgeon called from U of M to discuss my concerns about not using nerve sparing surgery.
                      He said that after chemo everything is a mess in there and it can be hard to even locate some of the nerves. He feels that it is important to be aggressive in making sure no cancer is left behind to give him the best outcome. He also said that even if its possible to spare the nerves on the left side, he doesnt feel that its a good idea to do that.
                      He said he would do the left side, and check for cancer .. if everything looks good he will spare the nerves on the right.

                      I think we are going to let this doctor take care of Anthony. I can't explain but I have a feeling that Anthony will be in good hands with him.

                      He did say that if they can spare the nerves on the right side, everything should work fine. (no loss of ejac. or anything) since both sides are responsible for that function.

                      Son Anthony DX 12/11/06
                      L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                      4XEP 1/29-4/6/ 07
                      AFP started increasing3 wks later
                      Residual abdominal mass found on CT
                      RPLND 6/8/07
                      Cancer in pathology-
                      80% mature teratoma, 20% Yolk Sac. --
                      No adjuvent chemo and
                      AFP normalised

                      July 22, 2010 ---- 3 years all clear!

                      Comment


                      • #12
                        The most important thing is getting him cured. I agree with your doctor that you need to be agressive in the treatment. What doe's Anthony think?
                        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


                        • #13
                          Originally posted by dadmo
                          The most important thing is getting him cured. I agree with your doctor that you need to be agressive in the treatment. What doe's Anthony think?
                          Well Anthony said right away that he felt ok about Dr. Hafez doing the surgery, but Anthony is very young and inexperienced about doctors, and questions to ask, risks involved etc ..

                          I am the one that told Anthony, I like Dr. Hafez too, but he hasnt had all that much experience doing this surgery, so I would like to look into this more first. That was fine with him. He acts as if he doesnt care one way or the other. I think that he is pretty much counting on me to ask the right questions and make the final decision.

                          I try to get him to talk more about it, but he just says, I'm not worried about it. I think that is because he knows Im on it like white on rice. At least I hope that is the case, because if the time comes that Im not here I would hope that he would be more assertive about his care. I hope he is paying close attention during discussions about what is going on and his treatment, so he learns how to handle things for himself if need be.

                          Son Anthony DX 12/11/06
                          L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                          4XEP 1/29-4/6/ 07
                          AFP started increasing3 wks later
                          Residual abdominal mass found on CT
                          RPLND 6/8/07
                          Cancer in pathology-
                          80% mature teratoma, 20% Yolk Sac. --
                          No adjuvent chemo and
                          AFP normalised

                          July 22, 2010 ---- 3 years all clear!

                          Comment


                          • #14
                            Tammy, my husband had a lot of teratoma in him and his AFP never normalized (even after high dose chemo). They actually did a chest surgery and a few weeks later the RPLND with elevated AFP. As soon as they took the mass out of the chest his AFP started going down and was normal soon after the RPLND. Hope that provides some comfort
                            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


                            • #15
                              Originally posted by Lori
                              Tammy, my husband had a lot of teratoma in him and his AFP never normalized (even after high dose chemo). They actually did a chest surgery and a few weeks later the RPLND with elevated AFP. As soon as they took the mass out of the chest his AFP started going down and was normal soon after the RPLND. Hope that provides some comfort
                              Thanks Lori, sure it does help. The unnerving thing for me is that there was no teratoma in the original path, so we can only guess that it may be teratoma, or cancer, or just possibly it's nothing. I guess we will see when the results for his lab work come back. Hoping that it is back within normal range.
                              I will let everyone know what we find out.

                              Thank you,
                              Tammy

                              Son Anthony DX 12/11/06
                              L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                              4XEP 1/29-4/6/ 07
                              AFP started increasing3 wks later
                              Residual abdominal mass found on CT
                              RPLND 6/8/07
                              Cancer in pathology-
                              80% mature teratoma, 20% Yolk Sac. --
                              No adjuvent chemo and
                              AFP normalised

                              July 22, 2010 ---- 3 years all clear!

                              Comment

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