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  • #91
    Thank you Dave

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    • #92
      I think it would be important to tell everyone where you are located so that if RPLND surgery is needed you can know the excellent surgeons for the job in your area. Unless I missed a post that says it?

      I was just 2a. 1 enlarged node to 1.9cm. I went with the RPLND surgery since I had an expert near by that could do the surgery. They found 5 total nodes rather than the 1 that showed up on the PET/CT. The surgery can be curative on its own but given the correct circumstances like mine, it lessened the amount of chemo I have to do from 4EP or 3BEP to 2EP.

      They will only allow the surgery if your tumor markers stay normal. As much as I don’t want to have to do chemo (again) I’m glad it’s not going to be 3 or 4 rounds and I can spare myself at least 1 round maybe 2.

      Just something to consider. Hoping the best for you.

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      • #93
        Originally posted by surfhb View Post
        I think it would be important to tell everyone where you are located so that if RPLND surgery is needed you can know the excellent surgeons for the job in your area. Unless I missed a post that says it?

        I was just 2a. 1 enlarged node to 1.9cm. I went with the RPLND surgery since I had an expert near by that could do the surgery. They found 5 total nodes rather than the 1 that showed up on the PET/CT. The surgery can be curative on its own but given the correct circumstances like mine, it lessened the amount of chemo I have to do from 4EP or 3BEP to 2EP.

        They will only allow the surgery if your tumor markers stay normal. As much as I don’t want to have to do chemo (again) I’m glad it’s not going to be 3 or 4 rounds and I can spare myself at least 1 round maybe 2.

        Just something to consider. Hoping the best for you.
        I live in El Paso Texas and I emailed Dr. Einhorn and replied saying that chemo would be best and his cure rate is still 99-100%. He did mention RPLND surgery as an option but not sure if my Husband’s urologist does those kind of surgeries. My husband’s tumor markers are normal and been that way since the beginning.

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        • #94
          Hi, I read all of the above. Then I have a question, is it normal that doctors will restage patients because of enlarged nodes during surveillance? I thought patients get stages only when they got diagnosed. Everything comes later called recurrence or relapse, isn't it?

          Sorry for my stupid question. I am trying to learn more about TC.

          Many thanks for your input!

          Best Regards

          Amy, Ran’s Mom
          Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance

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          • #95
            ​Hi...From Canadian semimoma protocol, surveillance seems to be the preferred method.....in my case there was surveillance after 2007 orchitectomy and in about a 1.5 years time (2009) the seminoma popped back as a 1 cm node in the para-aortic region (discovered by CT scan). I then had 20 days of radiation (took about 2 years to feel good after the bombing) . I was released from the program after 9 years of continued surveillance (blood work and x-rays). Wishing you and your husband health and happiness.

            Aug 07 - Stage 1 - Pure seminoma - Right orchidectomy + surveillance
            May 09 - Stage 2a - 1 cm node in para-aortic region
            June 09 - 20 X RT (25Gy to full lymphs, extra 10 Gy to node)
            Sept 09 - All Clear
            Mar 10 - All Clear
            Jul 10 - All Clear
            Nov 10 - All Clear
            Aug 11 - All Clear
            Feb 12 - All Clear
            Dec 12 - All Clear
            Dec 13 - All Clear

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            • #96
              Originally posted by Violet0729 View Post

              I live in El Paso Texas and I emailed Dr. Einhorn and replied saying that chemo would be best and his cure rate is still 99-100%. He did mention RPLND surgery as an option but not sure if my Husband’s urologist does those kind of surgeries. My husband’s tumor markers are normal and been that way since the beginning.
              Glad you got a response from Dr. E. He is absolutely the man when it comes to this. I emailed him also and did exactly as he suggested. Chemo isn’t as bad as you read about. There are many posts on the site that can help you deal with the side effects.

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              • #97
                Amy,
                Technically, this is a relapse, but no matter what it's called it's the treatment going forward that is what is important, & that does not change.
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP

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                • #98
                  Violet,
                  Glad you heard from doc E, I would follow his advise, he knows how to treat TC better than anyone.
                  Jan, 1975: Right I/O, followed by RPLND
                  Dec, 2009: Left I/O, followed by 3xBEP

                  Comment


                  • #99
                    Thank you very much, Dave.

                    I saw this word ”restage ” very often, but I couldn't read anything from papers. That confused me always.and sometimes it related to the outcome. So I want to know more about it.

                    Thank you again!

                    BRs

                    Amy
                    Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance

                    Comment


                    • Violet! Ugh, I am SO disappointed to hear about the relapse! I was just thinking about you the other day since both our husbands were diagnosed close to this time last year. So sorry for the relapse, but you guys are doing everything right! Hang in there. He will be okay. Keep us posted
                      Last edited by melanie; 03-17-19, 06:11 PM.
                      2/7/18- Husband diagnosed
                      2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
                      3/12/18-4/1/18 Adjuvant BEPx1

                      Comment


                      • Thanks Melanie and I will keep you posted. Today he had the pulmonary function test done. So Friday the oncologist will decide which chemo he will get. We are nervous and a little scared but I know we will pull through.

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