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  • Staging - help needed

    Hi all -

    My husband has been diagnosed with a mediastinal germ cell seminoma tumor. It is large (12 cm by 9 cm by 9 cm). There is no indication that it started in the testes; ultrasound of the testicles is clear. Because these mediastinal tumors are histologically the same as testicular ones, it is treated as testicular.

    Abdomen/pelvic CT as well as PET showed no spread beyond the chest mass. No lymph node or bone involvement. There is an area of the left lung that lit up slightly on the PET, but a bronchoscope showed no tumors, just engorged blood vessels and inflammation; it is thought to not be metastasis but inflammation from the chest tumor pushing down on the lung.

    He is being treated at Duke. The oncologist has said he is Stage III, of intermediate prognosis and will be treated with 4 cycles of BEP. His AFP is normal. His beta HCG is 33. LDH is mildly elevated [range 50-250] at 303. Oncologist said he has an 80% chance of a cure with the chemo.

    Otherwise my husband is a healthy 50 year old.

    I am trying to understand the "intermediate prognosis." According to IGCC:

    Seminoma


    Good
    Any primary site and no nonpulmonary visceral metastases and normal AFP, any hCG, any LDH

    Intermediate
    Any primary site and nonpulmonary visceral metastases and normal AFP, any hCG, any LDH

    He doesn't have any non-pulmonary mets. So why the intermediate prognosis? Is the oncologist doing that to justify the four cycles?

    I am wondering if he need a second opinion? The doctor intimidated us a bit, she was rushed, and left us rather confused.

    Thanks for any help you can give.
    Last edited by hbr777; 10-31-10, 05:22 PM.
    Heidi

    Husband - age 51
    10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ▀-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
    11/1/10 4X BEP
    12/7/10 End Cycle 2 - ▀-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
    2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
    6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
    Surveillance since 6/11

  • #2
    Hi, and sorry to welcome you. It sounds like you've been doing a lot of research and you have some very good questions.

    To me, it sounds like your doctor is being conservative. There isn't anything wrong with that, but you do deserve a complete explanation. My guess is that she is concerned about the elevated HCG. Testicular seminomas never elevate HCG and metastatic seminoma elevates it about 10&#37; of the time. I've never come across statistics on mediastinals. Perhaps she is concerned that the HCG indicates some non-seminoma components. Those considerations are probably why she says intermediate and the 4xBEP.

    You should get a second opinion. The best of the best is Dr. Larry Einhorn at Indiana Universiry. Email pretty much your entire post to leinhorn@iupui.edu . He usually responds within a day or so. A trip to see him would be an excellent move. Your Duke doctor should be happy to help.

    Let us know how it goes, and keep firing away with questions. We will keep you in our prayers.
    Paul
    Last edited by Paul54; 10-31-10, 06:28 PM. Reason: Corrected email address
    "Statistics are human beings with the tears wiped off" - Paul Brodeur
    Diagnosis: 05Sept07 Right I/O: 13Sept07; Pure Seminoma; Surveillance only per NCCN: All Clear August2013 (CT scan, Markers)

    Comment


    • #3
      Sounds like good risk based on what you posted, and I'd second the call for another opinion from a center of expertise. I expect 3xBEP is what you'll hear is appropriate.
      Scott, scott@tc-cancer.com
      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 Foundation services for people facing cancer now. Please join me!

      Comment


      • #4
        Thank you so much for your responses.

        Do you think Dr. Eimhorn will actually give me a second opinion w/o having an actual appointment?

        It is definitely seminoma - no non-seminona components per the pathology.

        The only thing the oncologist told us was she was classifying it as intermediate because it is in the chest. Yet, the IGCCC classifications do not differentiate WHERE the tumor is located; I believe it says "any primary site." She said the low HCG (I guess in terms of how high it can indeed go) is actually a positive thing in my husband's case. There was no beta HCG in the pathology - just in the blood test.

        She said he might just need three cycles of chemo. She is vascillating between three and four. Hence, I think, the intermediate prognosis.

        I just don't want him to have any more chemo than necessary.

        He starts chemo tomorrow. We are scared.

        A month after a tickling cough and we feel like we have fallen down so rabbit hole to an alternate universe.

        THANK YOU for your help. It is GREATLY appreciated.
        Heidi

        Husband - age 51
        10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ▀-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
        11/1/10 4X BEP
        12/7/10 End Cycle 2 - ▀-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
        2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
        6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
        Surveillance since 6/11

        Comment


        • #5
          With the info you have provided on this thread, Dr. E. will email you back within 24hrs. BEP is the right call, and 3x or 4x can be discussed along the way based on what he responds. In other words, send the email, but do not delay the BEP.

          I assume your husband has been tested for lung function? (I am also assuming that your Doc did say 3xBEP and not 4xEP?).

          Make sure that he takes his meds and that no one expects anyone to be a superhero. It;ll make things much easier for everyone. You may also want to discuss having a PICC line put in to save his veins. (think of it as a temporary plug for the time the chemo lasts... a cut-off sports sock works well over the tubes to protect them when not in use.)
          Best,

          Zsolt


          Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis

          ôExperience: that most brutal of teachers. But you learn, my God do you learn.ö - C.S. Lewis


          Mass found 11/20/08
          Left I/O 11/25/08
          Pathology: Seminoma, Stage 1
          Surveillance: All Clear since

          Comment


          • #6
            The doctor definitely said 4x BEP or possibly 3x BEP and not EP.

            My husband is being tested for lung function tomorrow.

            No port line right now because of the location and size of the mass in the chest.
            PICCU line - excellent idea about the cut off sock! My husband shaved his arms today to make it a bit easier.

            We are as prepared as we can be - but can one ever really prepare for this?

            I will email doctor Einhorn tomorrow.

            Thank you all from the bottom of our hearts.
            Heidi

            Husband - age 51
            10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ▀-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
            11/1/10 4X BEP
            12/7/10 End Cycle 2 - ▀-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
            2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
            6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
            Surveillance since 6/11

            Comment


            • #7
              It maybe that 4 cycles are determined because primary mediastium GCTs have a slightly lower prognosis than the primary gonadal type. You are right for a second opinion though. This forum has a lot of relevant knowledge in the primary testicular region, but I'd say much less so in what is a much rarer form

              Still, see it as a blip on life's path, as mediastinal seminoma is highly curable. See information from a medical paper below.

              "A retrospective analysis was performed of 18 patients with primary malignant germ cell tumours of the mediastinum treated with platinum-based chemotherapy between 1977 and 1990. All seven patients with pure seminoma were treated initially with chemotherapy and four of these patients received additional mediastinal radiotherapy. Only one patient relapsed; his initial therapy had included radiotherapy and single-agent carboplatin and he was successfully salvaged with combination chemotherapy. With a follow-up of 11 to 117 months (median 41 months) all seven patients with seminoma remain alive and disease free giving an overall survival of 100&#37;"

              http://www.ncbi.nlm.nih.gov/pubmed/8494705

              Best of luck with the treatment.

              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


              • #8
                Davie

                Thank you for the study. I have read so many journal articles my head is spinning! Thanks for the link to the one you posted. It is highly encouraging. Yesterday was the first day of chemo and it went perfect. We just have to get through the next three months to see what's up after that.

                To think that this thing was discovered because my husband had a cough/tickle. That's it.

                He has his pulmonary function test and did very well - bring on the Bleo tomorrow.
                Heidi

                Husband - age 51
                10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ▀-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                11/1/10 4X BEP
                12/7/10 End Cycle 2 - ▀-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                Surveillance since 6/11

                Comment


                • #9
                  Originally posted by hbr777 View Post
                  To think that this thing was discovered because my husband had a cough/tickle. That's it.
                  In the relative early stages, cancer is an insidious little b*gger (pardon my French).

                  At the time I had a tumour growing in my testicle and abdomen, and enough bHCG circulating in my blood to put a pregnant woman to shame - but I felt in the best shape of my life!

                  Well done for acting on the cough/tickle. It's so easy to ignore the symptoms.

                  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


                  • #10
                    We certainly never suspected this diagnosis. Not in a million years.

                    Here's what I don't get about the staging stuff: A stage 3 TC has distant metastatis/lymph spread, right?

                    My husband has only the mediastinal tumor that has not spread beyond the chest. The lymph nodes are clear and no other organs are affected. The abdomen is clear. The primary tumor is in the mediastinum and the testicles are clear. So... if stage 3 means spread and my husband's hasn't spread since it is confined to the mediastinum, why is it stage 3?

                    It just doesn't make sense to me to treat my husband as if he has a metastatic stage 3 TC when in reality, there is a primary chest tumor and no spread. It seems that these type of chest tumors don't have their own type of staging - and maybe that is indeed needed.

                    Other than Dr. Einhorn, does anyone know of any experts in mediastinal germ cell tumors?

                    Thanks bunches!
                    Heidi

                    Husband - age 51
                    10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ▀-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                    11/1/10 4X BEP
                    12/7/10 End Cycle 2 - ▀-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                    2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                    6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                    Surveillance since 6/11

                    Comment


                    • #11
                      According to eMedicine (I have access to this database through my university, so you might not be able to get it from home), there is unique staging for true mediastinal germ cell tumors:
                      ---
                      |Staging|

                      * Clinical staging of mediastinal germ cell tumors (MGCT)
                      *
                      o Stage I - Well-circumscribed tumor with or without focal adhesions to the pleura or pericardium but without microscopic evidence of invasion into adjacent organ
                      o Stage II - Tumor confined to the mediastinum with macroscopic and/or microscopic evidence of infiltration into adjacent structures
                      o Stage III - Tumor with metastases
                      o
                      + Stage IIIA - With metastases to intrathoracic organs
                      + Stage IIIB - With extrathoracic metastases
                      ---
                      Not sure if the staging system is applicable here or whether staging would alter the treatment plan. The article calls 4xBEP the "standard of care" for MGCT, which might be some reassurance for your doctor's treatment plan. Although second opinions are quite good.

                      Best!
                      Last edited by oditloid; 11-02-10, 04:18 PM.

                      Comment


                      • #12
                        Oditloid -

                        This is EXACTLY what I have been looking for - thanks!
                        Last edited by hbr777; 11-02-10, 04:35 PM.
                        Heidi

                        Husband - age 51
                        10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ▀-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                        11/1/10 4X BEP
                        12/7/10 End Cycle 2 - ▀-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                        2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                        6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                        Surveillance since 6/11

                        Comment


                        • #13
                          Answering my own question, via the oncologist's notes just posted online re: my husband's case, after completion of cycle 2 of treatment.

                          Scan results show marked improvement in his mediastinal mass and pulmonary nodules and therefore this cancer is behaving like a pure seminoma rather than a mixed pathology supporting his pathology. As such, 3 cycles will be sufficient for treatment as is good risk disease. We will plan on reimaging him 3-4 weeks after he completes cycle 3 of therapy.

                          So... the oncologist was being conservative before treatment when staging him as intermediate risk, and wanted to make sure that the pathology of seminoma was supported by a good response to the BEP.

                          This is why he is getting once less cycle of BEP - he was reassessed as good risk and that it s 3XBEP treatment rather than 4XBEP.

                          Only one more day of the long week to do. Then, 2 Bleo days and DONE.

                          So... in hindsight, I guess staging or risk status is not set in stone. Sometimes treatment response can alter it (them).
                          Last edited by hbr777; 12-16-10, 02:53 PM.
                          Heidi

                          Husband - age 51
                          10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ▀-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                          11/1/10 4X BEP
                          12/7/10 End Cycle 2 - ▀-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                          2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                          6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                          Surveillance since 6/11

                          Comment


                          • #14
                            Your husband and I are in the same boat, I have one more long week to do then 2 bleo's then I'm done unless I get some bad news. Best of luck to both of us starting the new year cancer free!!!!!!!!

                            Comment


                            • #15
                              Shaun,

                              I will toast you on that! Today is the last day of week 2, cycle 3, - the last cycle. They have great wifi here at Duke. The etoposide is infusing as I type. This should be the last round. Hopefully forever.

                              Best to you as you finish your BEP treatments. Here's to a happy and healthy new year!
                              Heidi

                              Husband - age 51
                              10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ▀-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                              11/1/10 4X BEP
                              12/7/10 End Cycle 2 - ▀-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                              2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                              6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                              Surveillance since 6/11

                              Comment

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