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Stage 1A 70% Embryonal -- risk level and treatment choices

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  • Stage 1A 70% Embryonal -- risk level and treatment choices

    Hi, all. I'm new to the group. I'm 4 weeks post-orchiectomy. I'm clinically stage 1A and had a mostly embryonal tumor. It seems that being mostly embryonal means that I'm higher risk than usual, though being negative for lymph/vasc invasion is a good sign. This makes it hard to figure stuff out from the literature out there. My urologist said that I could go surveillance, adjuvant chemo, or RPLND. I'm not too afraid of short-term pain or misery, so chemo and surgery don't scare me too much short-term, but I'm afraid of the idea of several rounds of chemo and the possible side-effects (stuff like risk of secondary malignancies, or lung problems, since I had bad asthma and lots of bronchitis over the years). When I read about some of the possible side-effects of a lot of chemo, it scares me deeply. I kinda want to do 1xBEP adjuvantly or the RPLND to cut down on the chances of lots of chemo. I can't quite figure out my risk of recurrence after 1xBEP because most studies seem to only either divide people by embryonal-predominance/non-embryonal predominance or vasc/invasion + or -. It seems there are very few of us in the EC-predominance and VI- group. Similarly for rates post RPLND. Any advice is much appreciated.

    Another factor, though not the major one, is that the RPLND is probably going to be out-of-network for me (no idea the actual cost yet, though I have a call in to the IU cost estimate team), since my urologist recommended going someplace that does a lot of them, and we apparently don't do that here. So, probably to either Mayo in Rochester (do they do lots?) or to Dr. Foster at IU. On that front, they probably can't get me in until 6wks+5days after my orch. I read that you should do the RPLND sooner than that if you're going to. Any advice on that front?

    Thanks in advance to all who respond!
    11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
    12/8/16 Diagnosed with TC in left testicle.
    12/9/16 Left I/O.
    1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
    1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
    2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

  • #2
    Hello! I was initially diagnosed with Stage 1a testicular cancer with 80% being embryonic and the other 20% was considered to be a yolk sac. I also was negative for any lymph/vasc invasion. I had my orchectomy in May. Because my tumor contained a large % of embryonic I had a greater chance of the cancer coming back...which it did in September. I started BEPx3 and can honestly say it wasn't that bad. I never got sick. My biggest side effect was anxiety and fatigue.

    I can tell you that the RPLND surgery is a HUGE procedure. You don't want to get this if you don't have to. I would exhaust all options before going to RPLND. Honestly I would wait it out and see if your cancer reappears. Like you said, chemo has many side effects and you don't want to do BEP x 1 if you don't absolutely need to. I will hope for the best. Hope this helps!
    May 6 - R/O Left Testicle
    Pathology Report - Mixed Germ Cell Tumor - Non-Seminoma
    80% Embryonal 20% Yolk Sac
    Margin Free, No LVI.
    Tumor Markers - Normal
    Stage 1A - On Surveillance

    September CT Scan showed 2 Para-Aortic enlarged lymph nodes measuring 1.6cm and 1.3cm
    Restaged 2A
    9/26 Started BEP x 3
    11/21 Ended BEP x 3
    11/21 On Surveillance Again - Lymph Nodes on post chemotherapy scan were 9mm and are expected to shrink further. Merry Christmas to me!!

    Comment


    • #3
      Lack of vascular invasion is a good thing & puts you at lower risk of relapse from the get go. Your risk of relapse after any adjuvant treatment will be at least as good, & likely better, than a person who had LVI. The exact number is not important, just that it is very low.

      1xBEP in network would be my choice over RPLND out of network. As a rule, surgery is pretty expensive without insurance.

      Dave
      Last edited by Davepet; 01-04-17, 05:30 PM.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

      Comment


      • #4
        I would do an RPLND in your situation. Your relapse rate with stage 1A after 1 x BEP would likely be close to 1%. Still, RPLND is a superior choice in this situation. Try to get a cure surgically if you can. It's a big surgery, but in experienced hands you'll be good. Einhorn would recommend surveillance, but it's essentially a personality choice. He is willing to take a risk of relapse knowing that 3 x BEP will kill any relapse. My argument is that you should avoid 3 x BEP if you can as you're relapse rate is not THAT low. It's difficult to quantify what it is and I'd ask Einhorn what he thinks the relapse rate is. Overall, I would do an RPLND if the relapse rate is higher than 30%. Below that, I would do surveillance. When relapse approaches higher than 50%, I would argue for 1 x BEP more.
        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


        • #5
          I was stage 2a, and had 4xEP and then a PC-RPLND at MSKCC. If I was in your shoes I'd do the RPLND, but only at MSKCC or IU if you can float it, otherwise I'd go in network adjuvant chemo. The surgery sucked, but the long term effects of full dose chemo still scares me. I agree with RJKD, if you can get a surgical cure then do it. Sheinfeld and his team at MSKCC were awesome, I've heard him say many times the only long term effect of RPLND should be scar. Just my opinion, i'm not a medical expert.
          Dx March 21 2016
          Right Orchiectomy march 25 2016
          60% embryonal 35% yolk sac 5% seminoma
          positive node on CT 1.4X1.3cm stage 2a markers rising, HCG 2300 AFP 25
          Started 4xEP april 2016
          Finished chemo July 2016, markers normal, complete radiographic remission
          RPLND MSKCC Aug 2016, removed something like 60 nodes all negative but one with teratoma
          Surveillance

          Comment


          • #6
            I agree with RJKD. I am stage 1B with the largest tumor being 100% embryonal. Though I did have lvi I too want to avoid chemo if at all possible. With markers and ct normal you could also look into robotic rplnd (thats what I am doing). The recovery is much quicker. Chemo can have lasting or permanent side effects, not to mention increasing risk for other cancer down the road. I am reserving chemo as a last option only. If I were you I would look into robotic rplnd
            11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

            Comment


            • #7
              I should also add that my surgery is scheduled for the 18th of this month. That puts me at 8 weeks post orchiectomy. I would have liked to do it sooner but even at 8 weeks its a better option than chemo in my eyes as long as ct and markers come back still normal just prior to surgery
              11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

              Comment


              • #8
                Hey,

                All of surveillance, RPLND or BEP x 1 are equal in terms of survival. They each have pros and cons, and there is not a right answer. Try to balance the pros and cons of each, and look at what you are the most comfortable to deal with.

                According to some data (http://www.sciencedirect.com/science...02283810011887), due to your negative LVI, despite 70 % EC, your relapse rate seems about 15 - 20 %.

                Good luck in your decision,

                Don't hesistate if your need more information.

                Jean-Philippe
                December 15, 2015 : Right I/O. Markers normal.
                December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
                January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
                February 2016 : Markers normal.
                March 2016 : Markers normal.
                April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
                April 25, 2016 : Happy birthday ! Relapsed confirmed.
                May 2, 2016 : BEP x 3 begins.
                July 3, 2016 : BEP x 3 ends.
                July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
                December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
                June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

                Comment


                • #9
                  Please ask Dr Einhorn what he thinks your relapse rate is. To me it's not very clear despite many articles I've read. I would like to learn from his experience. If you have a 20% relapse risk, my first choice would be surveillance, followed by RPLND, and lastly 1 x BEP. BEP can be tough treatment! If you were 1b, my calculation would change significantly though.
                  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


                  • #10
                    Hey RJKD, I did write to Dr. Einhorn, and I have an appt with Dr. Hanna coming up to talk to him about the options. In his e-mail, Einhorn wrote, "With embryonal predominant disease but no vascular invasion, you have a 70% cure rate with orchiectomy alone."
                    11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
                    12/8/16 Diagnosed with TC in left testicle.
                    12/9/16 Left I/O.
                    1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
                    1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
                    2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

                    Comment


                    • #11
                      Thanks for the follow-up ! It's always great to hear what's in the great brain of Dr Einhorn.

                      Good luck with your decision,

                      jp
                      December 15, 2015 : Right I/O. Markers normal.
                      December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
                      January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
                      February 2016 : Markers normal.
                      March 2016 : Markers normal.
                      April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
                      April 25, 2016 : Happy birthday ! Relapsed confirmed.
                      May 2, 2016 : BEP x 3 begins.
                      July 3, 2016 : BEP x 3 ends.
                      July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
                      December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
                      June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

                      Comment


                      • #12
                        That's great to hear from him. I trust his experience and intuition more than anything. I've seen so many complicated cases where he disagreed with other experts with respect to management plans and he was correct in the end. If it's a 30% relapse risk, I would do RPLND.
                        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


                        • #13
                          I'd also do rplnd with that relapse rate. Without lvi you could do surveillance, if you can handle the stress. I'd rather get ahead.
                          11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                          Comment


                          • #14
                            This is from my oncology textbook, called "Oncology: An Evidence Based Approach". Looks like Einhorn is right on the money with respect to the relapse rate.

                            " Patients with tumors with LVI and/or a predominance of embryonal carcinoma (EC) have a higher risk of having occult stage II disease, and RPLND is less likely to be curative without subsequent chemotherapy. In the Memorial Sloan-Kettering experience, half of all clinical stage I patients with pure EC treated with RPLND subsequently received chemotherapy. Indiana University reported that men with predominantly EC have a 32% risk of having retroperitoneal lymph node metastases and that 35% of these men will relapse without adjuvant chemotherapy. Of the 68% of these men with no disease found at RPLND, 20% will relapse without adjuvant chemotherapy. If LVI and predominance of EC are both present, the risk of lymph node metastases rises to 47% of whom 36% will relapse without chemotherapy while 29% of those without lymph node metastases relapse without chemotherapy. These figures indicate that at least a third of men with predominant EC and LVI require chemotherapy following RPLND, whereas additional men may be advised to undergo chemotherapy to lower their risk of relapse. Because of the high risk of receiving chemotherapy following RPLND, some have questioned the appropriateness of surgery for men with predominantly EC and LVI. "

                            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


                            • #15
                              Originally posted by RJKD View Post
                              Looks like Einhorn is right on the money with respect to the relapse rate.
                              Are you actually surprised? I know you had a hard time with 1xBEP. It happens with some folks. Most get through it pretty easily. I did 3xBEP & only had fatigue & PN in my fingers. 1x BEP would have been a cake walk. Chemo brain went away after a few weeks. My RPLND however has continued to cause me severe problems for 40 years. I can't imagine why this is still being done on anyone who won't die if they don't get the surgery,that is the only reason it should EVER be done JMHO.

                              Dave

                              Jan, 1975: Right I/O, followed by RPLND
                              Dec, 2009: Left I/O, followed by 3xBEP

                              Comment

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