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

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  • #16
    Originally posted by Davepet View Post
    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
    Yes, but now we are 40 years later. Robotic methods are now developed and are an option. Also, if one seeks a full open method, I would have no hesitation in going to Foster or Sheinfeld. There are so many other guys that have had no RPLND issues. In fact, it's the vast majority. The biggest concern with the RPLND is a small bowel obstruction and the risk of that is 1%, likely much lower if the procedure is done keyhole as there are far fewer adhesions produced by the surgery. I'd take that risk.
    Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

    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


    • #17
      Hey RJKD, I was under the impression that most of the bad effects of chemo were very unlikely if you had low doses (say no more than 2 cycles). What should I be afraid of when it comes to 1xBEP? For instance, do you know what it means with regard to the risk of secondary malignancies or pulmonary toxicity?
      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


      • #18
        Originally posted by unotesticulo View Post
        Hey RJKD, I was under the impression that most of the bad effects of chemo were very unlikely if you had low doses (say no more than 2 cycles). What should I be afraid of when it comes to 1xBEP? For instance, do you know what it means with regard to the risk of secondary malignancies or pulmonary toxicity?
        Unless you have an already known lung condition, I have zero concern about the effect of one cycle on your lungs. Secondary malignancies are thought to be far less common with 1 cycle, but we don't have data on this yet. One cycle has only been used since around 2008.
        Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

        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


        • #19
          Update after meeting with Dr. Hanna.

          1) He is awesome and patiently answered all our questions as best as possible. As opposed to the Dr.s that I talked to locally, I really felt like Dr. Hanna really knew his stuff about TC. This gave me some confidence in going forward that whatever I choose is at least based on more solid info.

          Below are a list of many questions that we asked him and a paraphrasing of his responses ó obviously, donít take my thoughts or misinterpretations of the Drís comments as medical advice. We were specifically talking about the case of embryonal predominance without lymphovascular invasion. My comments in parentheses.

          Q: Rates of recurrence after adjuvant 1xBEP
          A: About 3% (I had read from the SWENOTECA group that it was about 3% if you have LVI and I assume EC-predominance w/o LVI would be lower, so I guess that it's actually a bit lower and he was rounding or that he knows of different data)

          Q: What are the risks associated to 1xBEP and how do they differ from 3xBEP?
          A: We really just don't know. We know some of the risks associated to 3xBEP, but we haven't done longitudinal studies yet to figure out how much of that translates to 1xBEP.

          Q: Could I assume that 1xBEP has no more than 1/3 of the risk associated to 3xBEP?
          A: No idea. That sounds possible, but not ready to make a ruling on that until we do a real study on it. (I admire a doctor who knows what he knows and knows what he doesn't -- I much rather the "We just don't know" answer to a doctor who makes stuff up).

          Q: In the event of recurrence after 1xBEP, what then?
          A: 3xBEP as normal (I had seen the SWENOTECA group had treated some people in this boat with 2xBEP + 2xVIP -- Dr. Hanna said nothing is quite as good as the straight 3xBEP. I'd like to know why the SWENOTECA group did what they did, and the subtleties of this choice.)

          Q: Is there an option to do an adjuvant chemo course of EP? Maybe 2xEP?
          A: Probably, but there haven't been studies to determine its efficacy, so he wouldn't recommend it or do it.

          Q: Rates of recurrence after RPLND?
          A: Assuming pathological stage 1: 10%, if pathological stage 2 pN1, then 20%, if pN2, 30%

          Q: Any expected long term side effects if doing an RPLND?
          A: Not in the hands of an experienced good RPLND surgeon. He added that they have several there that fit in the category, including Foster, Cary, Masterson, and Birhle.

          Q: Is recurrence to the lungs worse or harder to treat than a recurrence to the lymph nodes (it would seem to me worse somehow).
          A: No. Either way 3xBEP should deal with it. Itís still possible, if needed, to surgically remove the left-overs if needed.

          Q: If post RPLND, I were in the pathological stage 2 setting, some do adjuvant chemo here?
          A: If you would be okay enough with chemo to do it in that setting, why not just do 1xBEP now? If that happens, he would recommend surveillance at that point.

          Q: Does a clear CT scan now mean that if I were pathologically stage 2 after RPLND, I would most likely be pN1?
          A: Thatís putting a bit too much faith in the CT scan. Sometimes it just misses stuff.

          Q: What is the risk of developing TC in the other ball?
          A: About 2%.

          Q: How does surveillance work? After 1xBEP? After RPLND?
          A: See oncologist every 2 months for first year, 4 for second and 6 for 3-5. Tumor markers every time and CT scan every other time. After 1xBEP itís see every 4 months, then 6 months, (I think also scanning every 4 months in first year). After RPLND, thereís no CT scans ó just chest X-ray and tumor markers.

          Q: What risks are associated to all this CT scanning?
          A: None really. They found that with 10 year follow-up (he admitted, perhaps not long enough), thereís no added risk of secondary malignancies from the CT scans as long as they are doing only the abdomen and not the pelvis or chest in CT scans.

          Q: What scanning should I do before RPLND or adjuvant chemo?
          A: Itís been a month since last scans, so should do them again before treatment (I think this means the abdominal CT and chest X-ray again. In light of the last answer, I donít know if this means pelvic CT or not.)

          Q: What is the time-frame for doing an RPLND? Chemo?
          A: Before 8 weeks after orchiectomy is okay for either. For adjuvant chemo, he recommended sooner is better ó if youíre trying to pre-kill it, why give it time to grow?

          Q: After RPLND, if itís found I need chemo, how long do I have to wait to heal first?
          A: Since he doesnít recommend chemo straight after RPLND adjuvantly, Iíd have time to heal before weíd find anything else in scans/tumor markers which would prompt a need for chemo. So this shouldnít cause problems.

          Q: Does having had TC decrease my life expectancy?
          A: You shouldnít live even a day less. (I assume he is talking about the setting with no relapse and no chemo, since chemo does have its risks, which I assume decrease average life expectancy.)
          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


          • #20
            That's a great summary. Very helpful. Although my understanding of the relapse rates in pN1 and pN2 were higher. Especially for pN2.
            https://www.ncbi.nlm.nih.gov/pubmed/12489056

            If pN1 or pN2 is found, it would be a difficult dilemma again though. Although at that point, if chemo is decided, then 1 x BEP is no longer an option. 2 x BEP is usually used, or quite possibly 2 x EP (I know many who have done this). With pN1, I think most would not do chemo, but with pN2 it's difficult to not pull the trigger.

            At this point, you have quite a bit higher chance that you will find NOTHING in the lymph nodes so RPLND is a good way to go! You're doing exactly what I would do.
            Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

            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


            • #21
              Thanks for pointing that out. To be honest, it's very likely that I mis-remembered the exact number he said there.

              My reasoning about the RPLND under the possibility of being pathologically stage 2 is as follows: If I were found to be pathologically stage 2, pN1 (which seems the most likely stage 2 possibility, given the clean CT-scan), then an RPLND would be considered still a good primary treatment option, so having already done it seems like a win. If I were in fact stage 2 pN2 (pN3 seems super unlikely with a clean CT, and I can barely handle the thought) then I should be doing 3xBEP, so I'd be glad to have done the RPLND to have gotten the information. Also, apparently post RPLND, you can get by with 2xBEP or 2xEP (at least that's what NCCN has) and that seems better to me than finding out in a later scan (thus waiting around longer for the beast to grow horns) that you need 3xBEP or 4xEP.

              All in all, I figure that if I'm in the 20% where I'm clinically stage 1A and pathologically stage 2, I think the RPLND is a very good thing to have done.
              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


              • #22
                You have pretty much come to the very same conclusion as I have. Cant remember where I saw but with you having no lvi your chances of coming out with pn0 are very good. The study was small, but out of 9 patients with pure ec treated with rplnd with 0 cancerous nodes found no patients relapsed. Even pn1 the number was fairly low.

                I am taking the risk and doing rplnd even at clinical stage 1b, for all the reasons you just posted above. I too have asthma and the risk of having complications from even 1 round of bleomycin doesnt sound like a risk worth taking for me, but I dont like my odds on surveillance. So rplnd it is! My plan is if pn0-pn1, Surveillance. If pn2, discuss chemo options (probably 2x bep at that point).
                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


                • #23
                  I hate surveillance for stage 1b. It's just like flipping a coin. I can say from my experience in this community, it's the 3rd round of BEP that really does it's number on the patient. That 3rd round is very brutal. Many patients have peripheral neuropathy, long-term fatigue, tinnitus, and many other ailments after 3 x BEP. You guys are being very smart by being proactive here.

                  Just want to put this out there. I have asthma, but my symptoms have been very mild since adolescence and that's why I was not concerned about the Bleomycin. If you have more moderate disease then of course you have to be a bit more concerned with Bleomycin. The more common side effect from Bleomycin is Raynaud's and even 1 cycle can cause a mild version of this. I have some ideas on how to mitigate this (if anyone reading this is interested just send me a line).

                  Another thing to point out is that I presume the relapse rate in pN1 (or pN2) disease changes depending on what is found. For instance, if seminoma is found I would assume the relapse rate is lower than if Embryonal is found. For my education, I would be interested to know the answer to this and whether we have data on this.
                  Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

                  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


                  • #24
                    unotesticulo, So sorry you're having to deal with this. I wanted to chime in because your pathology results were similar to mine. My pathology results were a 1.9 cm tumor onsisting of 80% EC and ~20% Seminoma ~1-3% of other junk. My only elevated tumor marker was my hcg @ 107. My tumor marker dropped a week after my I/O and my first CT scan was clear.

                    I elected surveillance because I didn't want to do chemo unless I had too. It also helped that my oncologist, urologist and Dr. Einhorn all suggested surveillance. With surveillance you need to be vigilant with your appointments and do not miss them. I go in every 2 months for blood work and every 4 months for a CT scan. Being a year out my surveillance schedule is going to change to 3 months for blood work and 6 months for CT scans. You'll be on sometime type of surveillance in the end anyways.

                    I am now officially 1 year out cancer-free. December was my 1 year mark and Dr. Einhorn said my chance of relapse is now < 5%. As aggressive as EC is it doesn't always mean you'll relapse. Granted I'm not out of the woods yet but I don't regret that I chose surveillance.

                    There is no 'wrong or right' decision you're making but I can tell you you're taking the right step by taking care of it regardless of chosing surviellance, rpnld or 1XBEP.

                    Best of luck to you man and if you have any questions you're more than welcome to shoot me a PM.

                    Comment


                    • #25
                      Good luck! New to journey with my 17 year old.
                      17 year old Grant dx 12/21/16
                      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                      pre/o CT Scan 12/22/16 normal
                      r/o 12/22/16
                      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                      BEP x 3 1/27/17
                      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                      Post Chemo RPLND 5/8/17: pathlogy Teratoma , 3 large masses removed

                      Comment

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