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  • #31
    We're back from my sons CT scan. They had us wait for the results for some reason, and then came to tell us that they contacted the doctors office and they said we can just go home and they will contact us.
    Well I didn't wait for that. I called to have them get my son something for pain, and asked about the scan.
    The only thing they told me is that there is an enlarged node in his abdomen measuring 3.5 x 4.5 cm.
    I guess the full report is not in yet. They said this is just the preliminary report and that when the written report comes in it will go on the doctors desk for him to look at when he returns, which will not be until next week!
    I told them that the waiting has gone on too long and I have seen my sons cancer go from what the E.R. said was a tiny hematoma that they did not think was cancer, to the whole testicle turning rock solid, with invasion in the lymph.
    Should we be waiting around for all these holidays and doctors vacations? I am growing very impatient and worried. Where will this cancer be next week?

    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


    • #32
      Originally posted by dadmo
      Please don't focus on the should haves. You're doing great just keep moving foward.
      I am really trying. I feel like I am losing it today .. I can't tell you how grateful I am that all of you are here.

      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


      • #33
        I understand what you're going through. It was my son who was sick and both my wife and I lost it on several occasions. Fortunatly the cancer is curable with the right treatment and early detection. The broken heart of a parent isn't so easily fixed. Just hang in there and focus on the battle ahead.
        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


        • #34
          Originally posted by dadmo
          I understand what you're going through. It was my son who was sick and both my wife and I lost it on several occasions. Fortunatly the cancer is curable with the right treatment and early detection. The broken heart of a parent isn't so easily fixed. Just hang in there and focus on the battle ahead.
          Invasion of the lymph and enlarged node in the abdomen .. is this considered early detection?
          How old is your son, and how is he doing? I sure understand you and your wifes feelings. I never thought I would see something like this happen to my child. I guess all parents are left in shock and disbelief when they hear their kids are sick.
          I feel very fortunate though that this is a curable type of cancer. I guess I just need to know if it has been caught early enough. This is something I still do not know.

          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


          • #35
            I know this is difficult, hang in there.

            I am no doctor, but I will try and help. In my husband's case, he had a hard testical and they found 2 masses in the lymph nodes in his abdomen. One was very small, about 1.5 by 3 cm and the other was larger...almost 10 cm (softball sized). These lymph nodes in the abdomen try and stop the cancer from moving into the testical and as result they contain cancer cells as well.

            My husband went through 4 rounds of chemo and had an RPLND and now they can not find ANY more cancer in his body. I hope this comforts you because his mass in his abdomen was really large and the chemo melted it.

            I am not sure if this is helping, or if it will end up relating somehow to your son's condition, but I am just trying to ease your mind. Keep pushing them, keep asking questions and if you do not feel you are getting the best care, you can always get a new dr. It is worth it to feel better about things. Keep us posted.

            Margaret
            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


            • #36
              Originally posted by mstlyn
              Invasion of the lymph and enlarged node in the abdomen .. is this considered early detection?
              TC can spread and grow very fast, and I would say this is still relatively early detection. In some people it can grow to this size in a couple of weeks, in others it takes longer.

              Your son is similar to me, I had a 3 cm tumour in my abdominal lymph node, and like me if that is the only tumour, he will be stage IIB. He will quickly have to start chemotherapy which will cure him. The tumour markers you quote indicate your son is in the good prognosis category.

              Studies have shown that combination chemotherapy for stage IIB (assuming it's non-seminoma) has cure rates of about 98%. It's a bit of a journey your son has embarked on, bust rest assured all the odds are overwhemingly in his favour.

              Davie
              Diagnosed March 2006, Stage IIB, 3cm RP mass
              10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
              Prechemo bHCG-2648, AFP-582
              3xBEP March-June, markers normalised
              3 months postchemo - 1.2cm residual RP mass
              RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
              June 2009 - TRT commenced to help out my lefty
              May 2011 - check-up, all clear

              Comment


              • #37
                Surveillance should now be officially over at this point, and additional active treatment should begin.

                Have they tested for tumor markers again? Normal markers and clear chest images could mean RPLND is an option; rising markers or further spread will mean 3xBEP or 4xEP chemotherapy.

                They need to get moving. That abdominal lymph node gets a little bigger, and chemotherapy will be a given.
                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


                • #38
                  Originally posted by Scott
                  Surveillance should now be officially over at this point, and additional active treatment should begin.

                  Have they tested for tumor markers again? Normal markers and clear chest images could mean RPLND is an option; rising markers or further spread will mean 3xBEP or 4xEP chemotherapy.

                  They need to get moving. That abdominal lymph node gets a little bigger, and chemotherapy will be a given.
                  When we went to see the doctor last friday, he said he wanted new blood work in two weeks. I wonder if this means he has no intention of doing anything until he has new marker numbers?!?!

                  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


                  • #39
                    Originally posted by Davie
                    TC can spread and grow very fast, and I would say this is still relatively early detection. In some people it can grow to this size in a couple of weeks, in others it takes longer.

                    Your son is similar to me, I had a 3 cm tumour in my abdominal lymph node, and like me if that is the only tumour, he will be stage IIB. He will quickly have to start chemotherapy which will cure him. The tumour markers you quote indicate your son is in the good prognosis category.

                    Studies have shown that combination chemotherapy for stage IIB (assuming it's non-seminoma) has cure rates of about 98%. It's a bit of a journey your son has embarked on, bust rest assured all the odds are overwhemingly in his favour.

                    Davie
                    The path report says non-seminomatous .. is there a difference between this and non-seminoma?
                    And about chemo..
                    What is considered a round of chemo? Is this a week, a month ??
                    My son in law had non hodgekins lymphoma when he was 22 and he had chemo once every 3 weeks for 6 months.
                    From the reading I have done I gather for TC the chemo is more like 3 or 4 times per week .. if this is right, how many weeks is average for someone with TC?

                    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


                    • #40
                      Originally posted by Margaret
                      I know this is difficult, hang in there.

                      I am no doctor, but I will try and help. In my husband's case, he had a hard testical and they found 2 masses in the lymph nodes in his abdomen. One was very small, about 1.5 by 3 cm and the other was larger...almost 10 cm (softball sized). These lymph nodes in the abdomen try and stop the cancer from moving into the testical and as result they contain cancer cells as well.

                      My husband went through 4 rounds of chemo and had an RPLND and now they can not find ANY more cancer in his body. I hope this comforts you because his mass in his abdomen was really large and the chemo melted it.

                      I am not sure if this is helping, or if it will end up relating somehow to your son's condition, but I am just trying to ease your mind. Keep pushing them, keep asking questions and if you do not feel you are getting the best care, you can always get a new dr. It is worth it to feel better about things. Keep us posted.

                      Margaret
                      Success stories always help and I thank you for caring enough to help ease the worry.
                      I notice you said "These lymph nodes in the abdomen try and stop the cancer from moving into the testical" which confuses me. I thought the cancer began in the testicle, and in my mind that would mean that the enlarged lymph node in the abdomen is a reaction to the cancer that spread from the testicle into the abdominal nodes, rather than reverse which would mean there was cancer elsewhere in the body first?

                      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


                      • #41
                        Originally posted by mstlyn
                        The path report says non-seminomatous .. is there a difference between this and non-seminoma?
                        And about chemo..
                        What is considered a round of chemo? Is this a week, a month ??
                        My son in law had non hodgekins lymphoma when he was 22 and he had chemo once every 3 weeks for 6 months.
                        From the reading I have done I gather for TC the chemo is more like 3 or 4 times per week .. if this is right, how many weeks is average for someone with TC?
                        mstlyn,

                        I suggest you read the following article from the testicular cancer resource center which will make things a lot clearer.



                        With a 4.5 cm lymph node and such a large percentage of embryonal carcinoma (95%) in his pathology, my guess is your doctors will go straight to chemo and not undertake a primary RPLND.

                        Embryonal carcinoma has a habit of skipping to the lungs, so a RPLND as first line of treatment may not be successful.

                        Just remember you are dealing with one of most curable cancers there is.
                        Diagnosed March 2006, Stage IIB, 3cm RP mass
                        10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
                        Prechemo bHCG-2648, AFP-582
                        3xBEP March-June, markers normalised
                        3 months postchemo - 1.2cm residual RP mass
                        RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
                        June 2009 - TRT commenced to help out my lefty
                        May 2011 - check-up, all clear

                        Comment


                        • #42
                          Originally posted by mstlyn
                          When we went to see the doctor last friday, he said he wanted new blood work in two weeks. I wonder if this means he has no intention of doing anything until he has new marker numbers?!?!
                          That made sense last Friday. Now that the CT scan has shown an abdominal mass, I'm almost certain chemotherapy is the right 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


                          Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                          Comment


                          • #43
                            mstlyn:
                            From what you have posted your son will almost certainly need chemo. There are two standard chemo mixes they use for tc patients one is 3 rounds of BEP and the other is 4 rounds of EP. A round of chemo is 5 days of chemo followed by 2 weeks off, the effects are cumulative so your son will feel less well as treatment continues. I know how horrible this sounds but chemo today isn't what it used to be, the sickness is quite controllable and your son will feel lousy but not so bad that he will want to stop. My son said he spent many Sunday mornings at college feeling worse.
                            The fact that it has spread does not make it less curable and does not put him in a higher risk category. To be direct I wouldn't say it was caught early but it seems to have been caught early enough. My son was caught at stage II with spread to the lymph nodes and spots on his lungs he did 4EP and an RPLND and is now almost 3 year from diagnosis. I have no reason to suspect that your son shouldn't do just as well.
                            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


                            • #44
                              Originally posted by mstlyn
                              Success stories always help and I thank you for caring enough to help ease the worry.
                              I notice you said "These lymph nodes in the abdomen try and stop the cancer from moving into the testical" which confuses me. I thought the cancer began in the testicle, and in my mind that would mean that the enlarged lymph node in the abdomen is a reaction to the cancer that spread from the testicle into the abdominal nodes, rather than reverse which would mean there was cancer elsewhere in the body first?
                              How the doctors explained it to us was like this:

                              When you get a sore throat, the lymph nodes in your neck swell because it is their job to stop and treat illness. So when the cancer started in the testical, the surrounding nodes started to kick into action and "do their job". As a result, they became filled with cancer themselves trying to "protect" the body from cancer. Since they are a network, other lymph nodes also contained cancer. I am sure my doctor could explain this MUCH better than I can and I hope I did not confuse you.

                              Let me know if you need to talk. [email protected]

                              Margaret
                              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


                              • #45
                                Margaret:
                                Yes the lymph nodes did their job protecting the body from the spread of cancer. My son thanked his lymph nodes before they had to be removed, he felt they made the ultimate sacrifice to save 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

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