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  • Seminoma

    Hi guys. My husband was diagnosed with testicular cancer(pure seminoma) He had 20 cm tumor pushing the kidney in a retroperetonium lymph nodes. We did 3 cycles of BEP and recently did a PET scan which showed 2 lymph nodes are still there 4.7 cm and 2.7. Now they want to perform RPLND and remove the kidney,remove aorta and part of the colon. Its a very risky surgery. I do not understand wht with seminoma chemo didnt work. Its either we needed 4 cycles or the dosage was wrong. Anybody can rely and share anything with me?! Thank you

  • #2
    A 20cm tumor is quite large, I would want an expert to weigh in on this. Consider emailing Doc E to get his opinion
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #3
      I agree that the 20cm is large and not sure of the timing of the PET on if the nodes will shrink further. If he is not being seen in a center of excellence, then I would see about reaching out for one of their opinions. Our friends at the TCRC keep an expert list at: http://thetcrc.org/experts.html

      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

      For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

      Comment


      • #4
        Contacted Dr Einhorn. He said not neccessary its a cancer but scar tissue. Advised to repeat blood work bc hcg was 11.96. Flying to Dana Farber to see if I can talk to his collegue Dr Chris Sweeney. I hope he will need a survillience,otherwise the next step is a high dose

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        • #5
          Sounds like a great plan. Chris Sweeney is a top TC doc and a wonderful human as well. You are in great hands with him.

          Mike

          Originally posted by Beauty20201 View Post
          Contacted Dr Einhorn. He said not neccessary its a cancer but scar tissue. Advised to repeat blood work bc hcg was 11.96. Flying to Dana Farber to see if I can talk to his collegue Dr Chris Sweeney. I hope he will need a survillience,otherwise the next step is a high dose
          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

          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

          Comment


          • #6
            Unfortunately ,Dr Sweeney is booked till September. No way to see him. Im gonna see watever doctor is Im scheduled with and see whats gonna happen. I cam mention to him abt Dr E and Dr Sweeney but its not a fact he will want to communicate. I just dont want more chemo amd hopefully those lymph node will continue shrinking

            Comment


            • #7
              I would keep Doc E informed as things progress, please keep us posted as you learn more
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Did blood work in DanaFarber.hcg raised 42.6 ldh 530.Next step is high dose chemo or surgery. Anybody went through hdct?

                Comment


                • #9
                  How long has it been since he finished chemotherapy? Sometimes they look at < 2 years or > 2 years since finishing chemo as a cutoff for preferring chemo vs. surgery. Although with rising markers that can lend more towards chemotherapy. I think the second questions is then if chemo is needed, does one go with second line therapy like a TIP regimen or straight to HDCT with stem cell rescue. With seminoma the choices can be different than with nonseminoma. Definitely some difficult and more nuanced decisions so glad to hear you are being seen at Dana-Farber due to their experience.

                  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

                  For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                  Comment


                  • #10
                    DanaFarber has decided to proceed with TIP following hdct with petipheral stem transplant. He is already done with 1 cycle of TIP. Will be admitted for a 2nd round of TIP and then they will be preparing for hdct. My biggest concern is loose of hearing as a side effect of carboplatin(CE-Carboplatin+etoposide) But thats what Dr Einhorn recommended.

                    Comment


                    • #11
                      Dr Einhorn is top of the field, I would always follow his recommendations
                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP

                      Comment


                      • #12
                        Fwiw, from what I’ve seen Carboplatin+etoposide has relatively lower ototoxicity than other regimens. I have to echo Davepet’s advice regarding Dr. Einhorn’s advice. Best wishes
                        6-17-2014 - ultrasound: right testis neoplasm likely 6-20-2014 - HCG 43 mIU/mL 6-25-2014 - right radical orchiectomy 6-27-2014 - pathology: 3.6 x 3 x 2.3 cm seminoma, classic type.- pT2, pNX, pMX 8-15-2014 - 1x carboplatin 12-22-2020 - enlarged left supraclavicular node. Large abdominal mass noted during GP examination 12-24-2020 - HCG normal 12-28-2020 - CT: large right side retroperitoneal mass, small cyst lower pole of left kidney, 2.3 cm left supraclavicular cystic lesion 1-13-2021 - biopsy 2 left supraclavicular nodes 1-15-2021 - pathology: metastatic seminoma 1-21-2021 - PET: findings consistent with metastatic disease left clavicular 7mm, posterior mediastinum 1.8cm, right adrenal node 1.6cm, aortocaval node 5 x 5cm 2-8-2021 started 4xEP 3-29-2021 switched to 2xEC after 2xEP

                        Comment


                        • #13
                          The transplant doc said its a common thing with platinum drugs to lose hearing. 700 mg of it plus he has only 1 kidney functioning amd they are afraid for him to lose it. Idk. I am very scared

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                          • #14
                            It’s true that platinum based drugs cause hearing loss, but I was advised that carboplatin causes less than cisplatin. My regimen was changed mid treatment for that reason.

                            I’m hoping for a good outcome for your husband and praying for him
                            6-17-2014 - ultrasound: right testis neoplasm likely 6-20-2014 - HCG 43 mIU/mL 6-25-2014 - right radical orchiectomy 6-27-2014 - pathology: 3.6 x 3 x 2.3 cm seminoma, classic type.- pT2, pNX, pMX 8-15-2014 - 1x carboplatin 12-22-2020 - enlarged left supraclavicular node. Large abdominal mass noted during GP examination 12-24-2020 - HCG normal 12-28-2020 - CT: large right side retroperitoneal mass, small cyst lower pole of left kidney, 2.3 cm left supraclavicular cystic lesion 1-13-2021 - biopsy 2 left supraclavicular nodes 1-15-2021 - pathology: metastatic seminoma 1-21-2021 - PET: findings consistent with metastatic disease left clavicular 7mm, posterior mediastinum 1.8cm, right adrenal node 1.6cm, aortocaval node 5 x 5cm 2-8-2021 started 4xEP 3-29-2021 switched to 2xEC after 2xEP

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                            • #15
                              Thank you. Its just the fact of high dose. Im hoping it wont happen
                              Last edited by Beauty20201; 08-18-21, 07:27 PM.

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