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Is the 5 or 6 BEP cycles right treatment for Mediastinal Seminoma for my son ?

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  • Is the 5 or 6 BEP cycles right treatment for Mediastinal Seminoma for my son ?

    Hi,
    I wrote this from Thailand,
    My 14 years old son has mediastinal mass (Biopsy tested as pure Seminoma) Size was 10.4x14.8x12 cm. AFP = 0.97 betaHCG = 85.7 After 3xBEP (BEP on day 1 and EP on day 2-5) First cycle start on 20/7/16 CT on 20/9/16 The mass size shrinked to 3.1x6x6.5 cm, AFP = 2 betaHCG < 5. Doctor said the mass is non-excise due to its size and position.
    He just finished 4th cycle BEP on 26/9/16 no CT yet, AFP =2 betaHCG <5 and Doctor suggest to have 5th BEP on this coming Thursday.
    Almost information I found on Web, said 3-4 cycles as standard treatment. Rarely mentioned >4.
    I went to informal second opinion (Oncologist who is friend of friend), he also think 5th, 6th cycle is OK.
    - Anyone who knew or experienced something similar ? I am very hesitate now to let him go for the 5th.
    - Anything we can do for residual mass ? or just leave it.

    Thanks in advance

  • #2
    Hello Udom,

    I have not heard of going on to a 5th or 6th cycle of BEP and I personally would be concerned with the cumulative dose of bleomycin I was receiving if I did so.

    If it was me I would have my physician or my oncologist friend reach out to a testicular cancer expert to get their opinion of the next steps. Our friends at the TCRC have a list of experts at: http://tcrc.acor.org/experts.html

    Is you son in Thailand as well or where is he?

    Mike
    Oct. 2005 felt lump but waited over 7 months.
    06.15.06 "You have Cancer"
    06.26.06 Left I/O
    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
    06.30.06 It's Official - Stage I Seminoma
    Surveillance...
    Founded the Testicular Cancer Society
    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

    Comment


    • #3
      Thanks Mike,
      Yes, he is in Thailand and seem like 4-6 is standard protocol here.
      Our doctor said that the mass must be removed to avoid relapse.
      So suggest more chemo to make it smaller until removable.
      I will try to contact some of TC experts you gave.

      Comment


      • #4
        Hi Udom,

        I think getting an expert involved would be very beneficial. I think the biggest issue is are there other drugs available in Thailand, etc. as I just have no idea. Doing more than 4 cycles of BEP is a bit old school but it may be the only option in Thailand.

        Mike
        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

        Comment


        • #5
          I'm confused. If no CT has been done post-chemo, how would anyone know if the mass is non-excisable? After 4xBEP, I had my large mass removed and it turned out to be 100% necrotic tissue. So extra chemo wouldn't have made it any smaller.

          Plus my markers kept going down after chemo was over until they eventually normalized.
          3/10/16 Large mass detected in abdomen 8x7 cm
          3/16/16 Diagnosed with NSGCT; Intermediate TxN3M0S3+
          3/21/16 Begin 4xBEP
          6/6/16 Complete 4xBEP
          6/17/16 Left I/O Only fibrous tissue present
          7/14/16 CT Scan shows moderate decrease in size of mass 6 x 5.3 cm
          8/2/16 PC-RPLND Necrotic tissue with no viable tumor found
          8/16/16 Begin Surveillance.

          Comment


          • #6
            Update - Doctor agreed to stop Chemo and begin surveillance.
            And suggest to find 2nd opinion on surgery whether it can be done and risk vs. benefit.
            Thanks for all comments, especially Thank you Mike who created this community.

            Comment


            • #7
              5-6 cycles of BEP is completely incorrect for a primary mediastinal seminoma. Also, risks of surgery in that region of the body are high. Make sure your doctors talk to Larry Einhorn at Indiana. He has treated many cases like yours.
              Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

              7/1/2015: felt tiny lump on side of R testicle
              7/30/2015: Ultrasound shows 2 intra-testicular masses.
              7/31/2015: tumor markers normal, CXR clear
              8/5/2015: R orchiectomy
              8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
              8/14/2015: CT abdomen/pelvis clear, Stage 1b
              8/24/2015: started 1 x BEP

              Comment


              • #8
                I went to 2nd cardio surgery doctor, he said surgery bring little benefit here coz it can't fully removed. If further treatment is needed, radiation should be the prefer one.

                Comment


                • #9
                  Just curious, the biopy was done by needle biop, took 3 spots of large mass. Is this enough to conclude as seminoma ? Because there are other big parts of mass that not been tested. Would it be possible that there are non-seminoma cells inside the mass too ?

                  Comment


                  • #10
                    Originally posted by udom View Post
                    Just curious, the biopy was done by needle biop, took 3 spots of large mass. Is this enough to conclude as seminoma ? Because there are other big parts of mass that not been tested. Would it be possible that there are non-seminoma cells inside the mass too ?
                    That's what happened to me. The biopsy showed only seminoma, but my blood work showed AFP. So we knew it was nonseminoma. Make sure they test for this.
                    3/10/16 Large mass detected in abdomen 8x7 cm
                    3/16/16 Diagnosed with NSGCT; Intermediate TxN3M0S3+
                    3/21/16 Begin 4xBEP
                    6/6/16 Complete 4xBEP
                    6/17/16 Left I/O Only fibrous tissue present
                    7/14/16 CT Scan shows moderate decrease in size of mass 6 x 5.3 cm
                    8/2/16 PC-RPLND Necrotic tissue with no viable tumor found
                    8/16/16 Begin Surveillance.

                    Comment


                    • #11
                      Thanks helloladies21, his AFP was normal all the way till now. I have read that some nonseminoma not produce AFP, this make it harder to diag.

                      Comment


                      • #12
                        Update,
                        July 16 - Sept 16 : BEP 4 cycles
                        Nov 16 : PET scan, Serum normal, All clear and tumor got smaller
                        Non excise tumor, Begin surveillance
                        May 17 : CT scan, Serum normal, Tumor still kept smaller
                        Next CT in Sept 17

                        Anyone can share below
                        1. What is standard follow up protocol (every 6 mths) ? And for How long will consider disease-free ?
                        2. What is recurrence rate for Mediastinal seminoma ?
                        3. Just in case, if Recurrence What are treatment options ?
                        Thanks,
                        Last edited by udom; 07-10-17, 09:28 AM.

                        Comment


                        • #13
                          Good for your son. For the first two years my surveillance is blood tests every two months and a CT scan and chest x-ray every 6 months. It will change after that, but I forgot what into.
                          3/10/16 Large mass detected in abdomen 8x7 cm
                          3/16/16 Diagnosed with NSGCT; Intermediate TxN3M0S3+
                          3/21/16 Begin 4xBEP
                          6/6/16 Complete 4xBEP
                          6/17/16 Left I/O Only fibrous tissue present
                          7/14/16 CT Scan shows moderate decrease in size of mass 6 x 5.3 cm
                          8/2/16 PC-RPLND Necrotic tissue with no viable tumor found
                          8/16/16 Begin Surveillance.

                          Comment

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