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  • My 1B nonseminoma

    Hi everyone. I was just diagnosed last month and am wondering what thoughts you guys have. I'm at the point I have to decide what path to take but am struggling with the decision. Everything seems to have significant drawbacks.

    The background:
    I'm 38. Right orchiectomy was July 5. 2.1cm mixed germ cell tumor, nonseminoma, limited to the testis. The first pathologist's report was 60% embryonal, 25% yolk sac, 15% “post-pubertal” teratoma. A second pathologist (different facility) was slightly different on the smaller component percentages (25% teratoma, 15% yolk sac). Lymphovascular invasion present. Spermatic cord margin negative. CT scan & X-ray around the time of the I/O were fine. LDH marker was normal before and after surgery. hCG was normal (4 before and dropped to < 1). AFP was 105.6 two days before surgery and had dropped to 10.6 by Aug 1. I got blood drawn a couple days ago but don't have the results yet. So right now all signs point to stage 1B.

    The first oncologist recommended 2x BEP because of the LVI. He showed me the commentary on the NCCN guidelines that suggest up to 50% chance of relapse. They don't do RPLND at that hospital. The second oncologist recommended RPLND first with chemo a close second choice. She referred me to a local urologist that does a couple of them per month (so has some experience but not like the big centers I'm sure). Both she and that urologist commented on the fact that teratoma doesn't respond to chemo, so I think they would suggest RPLND first when it's easier to perform (and before it could spread). They both seemed to imply that there was a decent chance I wouldn't need chemo after the RPLND, but of course it depends on what they might find. Still, it's now been 7 weeks since the I/O (it took time to get in to see all the doctors).

    So of course there are the 3 main choices.

    Chemo. Great result for the TC, but I'm very worried about the long-term side effects, even if we only did 2 cycles. I wouldn't like the short-term stuff but could deal with it as long as it passes. My assumption is that fewer cycles have lower risk of those side effects, so there could be advantage in doing it now (if it really had spread). Still, I'd hate to increase the risk of a secondary cancer (for example) when I don't know for sure whether the original TC has spread. I have been wondering whether there are things I could do to offset that risk.

    RPLND. Of course the promising angle here is that the likelihood of long-term side effects appears to be very low (especially if done by a skilled surgeon) - aside from the big scar. I wouldn't like being out of commission for several weeks but could manage and my boss has been very understanding. I really don't like the idea of the scar .. but suppose I would get used to it eventually. And there's still the chance I'd need chemo afterwards.

    Surveillance. The stress associated with simply monitoring aside, if it did relapse then I would need more aggressive treatment (e.g. 4x BEP instead of 2x). So my concerns about long-term consequences of chemo would be amplified. The last 3 doctors all recommended against surveillance, but for me it's still on the table. I keep wondering if there are ways to reduce the risk of relapse. But I've had trouble finding good risk percentages on this one. Most statistics I can find seem to aggregate different conditions that probably have divergent risks, so I'm wary of whether it's really a 50% risk of relapse.

    This was longer than I originally intended. I could say more but I'll stop here for now. What do you all think? I haven't had nearly enough time to read through the various stories here yet, so maybe I'll find other insights.

  • #2
    Not a doctor, weighing in with my experience/understanding:

    50% relapse rate sounds right.

    Please discuss in detail with your oncologist the clinical benefit of 1xBEP vs 2xBEP. My understanding is that 1xBEP is more appropriate for stage CS1. While relatively short and well tolerated it can affect your long term cardiovascular and metabolic health. Also it can contribute to low testosterone, neuropathy, mental fog that can last for some time- although most of the effects are not permanent for most people.

    Something also to discuss with your doc:
    How fast did your AFP return to normal; some emerging research suggests that tumor marker decay rate may be indicator of tumor activity.

    If I were you I would seriously look into an RPLND. It has to be done by an experienced surgeon however. It doesn't have the long term negative effects of chemo. Even 1xBEP is not good for long term cardiovascular health and honestly the full effects are not yet fully studied.

    Active surveillance seems like a good option if you are the type who is willing to accept the odds and the life situation is suitable for it. Even with the above options you will have a surveillance as well.

    Above all, all the options lead to a high likelihood of cure so don't feel like there is a wrong choice! Own the decision, feel empowered and move on to the next stage of life.
    Last edited by mcintoda; 08-25-17, 02:49 AM.
    Age 31 - Portland, OR
    01NOV16- Pain in right testicle, palpable mass
    13NOV16- R I/O. Markers normal
    27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
    06DEC16 - CT scan clear
    09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
    03JAN17- Ended 1xBEP; start surveillance
    18MAR17-2nd pathology report shows 90% EC , 10% seminoma

    Comment


    • #3
      Hi, I would seriously look into the possibility of an RPLND. To avoid the large scar and long recovery time, you can look into the possibility of having laparoscopic or robot assisted laparoscopic RPNLD.

      Comment


      • #4
        I would recommend an RPLND to try to avoid chemo. You have a 50% chance of relapse. You can take that down by another half (generally) to 25% relapse risk if you go RPLND. That's a very general number though. For example, if nothing is found on RPLND, the relapse risk is as low as 8-10%. If something is found, it really depends on how much is found.

        If you do chemo, 1 x BEP is the maximum. 2 x BEP is overkill and no longer recommended by the top TC oncologists.

        Surveillance is never a bad option too. Many institutions would recommend this. If you relapse, you likely will not need 4 x BEP, rather you would need 3 x BEP. After going through 1 x BEP, I can say for sure that 3 x BEP would be a punishing treatment. I've heard 4 x BEP is incredibly difficult. For these reasons, I personally advise RPLND in your case.
        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'm not a doctor, but I would be curious to see next Tumor Marker results. If AFP has dropped further than it depends on your personality and ability to handle any anxiety associated with the blood marker draws, and CT Scans. If you are not an anxious person than surveillance would be a good option. If you tend to be more anxious and since you have Teratoma in your intial path, than RPNLD is another good choice. Given what my son has shared, RPNLD though major surgery was not as hard physically/emotionally as chemo was and he only had 3xBEP.
          Please keep us updated.
          17 year old son 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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

          Comment


          • #6
            Thanks for the thoughts. I appreciate it.

            I called and got the last tumor marker results today. Unfortunately I didn't have pen & paper handy so I may not be 100% right on the numbers, but they were all in the normal range. AFP ~6.2, LDH ~155, and hCG < 3 (that's as specific as she got on that one). So I was happy to hear that.

            I asked the last urologist about laparoscopic RPLND and he's in the camp that doesn't think it's as effective as open RPLND, and has some drawbacks. He said they do a lot of other kinds of laparoscopic or robotic surgeries there, but not for RPLND because of that. His opinion was that there were only a handful of people in the world that are skilled enough with it (and he's not one of them).

            I'll definitely have to ask the oncologist about 1xBEP vs 2xBEP (or some number of just EP?). I thought I read somewhere that bleomycin is the component that can cause cardiovascular problems and that it's sometimes omitted, but I don't really understand how changing the drug mixture impacts the overall effectiveness.

            Their tumor board meets on Tuesday and the nurse recommended that I call back on Wednesday (if they don't call me first) to see what they collectively think.

            Comment


            • #7
              ARCH~ Glad your markers have stayed normal. Again not a doctor, but if you decide on RPNLD definitely do OPEN, with my son they found more nodes and masses than visualized on CT Scans, even after BEPx3. Bleo gets a bad rap, but they should run lung function test if you do go with chemo. Let us know what you decide.
              17 year old son 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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

              Comment


              • #8
                Originally posted by Arch View Post
                Thanks for the thoughts. I appreciate it.

                I called and got the last tumor marker results today. Unfortunately I didn't have pen & paper handy so I may not be 100% right on the numbers, but they were all in the normal range. AFP ~6.2, LDH ~155, and hCG < 3 (that's as specific as she got on that one). So I was happy to hear that.

                I asked the last urologist about laparoscopic RPLND and he's in the camp that doesn't think it's as effective as open RPLND, and has some drawbacks. He said they do a lot of other kinds of laparoscopic or robotic surgeries there, but not for RPLND because of that. His opinion was that there were only a handful of people in the world that are skilled enough with it (and he's not one of them).

                I'll definitely have to ask the oncologist about 1xBEP vs 2xBEP (or some number of just EP?). I thought I read somewhere that bleomycin is the component that can cause cardiovascular problems and that it's sometimes omitted, but I don't really understand how changing the drug mixture impacts the overall effectiveness.

                Their tumor board meets on Tuesday and the nurse recommended that I call back on Wednesday (if they don't call me first) to see what they collectively think.

                Great to hear about the normalization of the tumor markers!

                My oncologist reinforced to me that etoposide is the "bad one" in the cocktail; for secondary cancer and the effect is dose dependent. Bleomycin is not reccomended for folks who have respiratory issues or elderly (50+). Lance Armstrong did EP only in an effort to reduce the long term lung effects. Dr Einhorn says that while bleomycin has a small effect on lung function, the effect is negligible for most (non professional athletes) like you and me. In the case of a relapse my guess is that your docs would suggest 3xBEP and only 4xEP in case of some specific contraindication. Reducing the dose of etoposide should be a focus to reduce your risks of secondary cancers.
                I specifically was allergic to bleomycin and had a predictable persistent vomiting and shaking episode about 4 hours after injection. Next day I was much better but nausea persisted for weeks.

                Although I received a lung function test prior to 1xBEP my oncologist now says they don't reccommend it unless you have symptoms or some concerns about lung functions. Honestly it was a distressing test for me. Ask closely what the reason for lung function test pre- and post- chemo is if you go that route.
                Age 31 - Portland, OR
                01NOV16- Pain in right testicle, palpable mass
                13NOV16- R I/O. Markers normal
                27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                06DEC16 - CT scan clear
                09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                03JAN17- Ended 1xBEP; start surveillance
                18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                Comment


                • #9
                  Mctintoda is correct. Etoposide is the most worrisome of the drugs. It is directly responsible for causing AML (very deadly leukemia) in some people. It is dose dependent, but even very low doses have been shown to cause it. Bleomycin is the least worrisome drug of all of them. Cisplatin causes all sorts of uncomfortable side effects (ringing in ears, peripheral neuropathy). But it also has leukemogenic potential, mostly at the higher doses. It is thought that it acts synergistically with Etoposide to increase the risk of Leukemia.

                  Lance Armstrong actually had 1 x BEP plus 3 x VIP. Part of his treatment was in Texas and then he went to Indiana to get the VIP treatment.

                  Lung function tests before 1 x BEP are a waste of time.

                  Although Bleomycin is the least worrisome and a drug that I never gave the slightest mind to, it did cause some mild Raynaud's in my hands. I never expected that with 1 cycle of Bleomycin. Raynaud's is actually the most common side effect of Bleomycin, not lung disease.
                  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
                    Interesting. I guess I'm leaning towards RPLND right now to try to avoid the potential long-term complications of chemo. If I'm lucky I wouldn't need any follow-on chemo (that's a big "if"). That feeling might change tomorrow, I suppose, so we'll see.

                    Comment


                    • #11
                      Well, the surgery is scheduled for Sept 11. :P It feels like the "least bad" option to me right now considering my 50% risk of relapse (for surveillance-only) and the potential long-term problems of chemo. I think that if I were actually dealing with a relapse that the chemo risk would be more palatable, but I'm personally finding it hard to justify at this time. So my fingers are crossed that RPLND will be enough to avoid chemo (either now or due to later relapse). And, of course, that the surgery goes off smoothly.

                      FYI, I did ask the local oncologist about 1xBEP vs 2xBEP and she said she would probably recommend 2 (though not strongly) if I went that route. I also reached out to Dr Einhorn and he suggested only 1 cycle if I went that route.

                      So we'll see how it goes. Luckily my boss is very understanding. I'm hoping I'll feel good enough after ~2 weeks to get back to work (even if it's just a bit of work from home).

                      Comment


                      • #12
                        Good to hear! Where are you getting RPLND done?
                        Age 31 - Portland, OR
                        01NOV16- Pain in right testicle, palpable mass
                        13NOV16- R I/O. Markers normal
                        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                        06DEC16 - CT scan clear
                        09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                        03JAN17- Ended 1xBEP; start surveillance
                        18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                        Comment


                        • #13
                          University of Minnesota Medical Center. I thought for a bit about traveling to Indiana or Mayo Clinic. I'm certainly nervous about the whole thing, but the chances of successful surgery are still very good. Tough decision, but if it were easy I would have made it weeks ago.

                          I'm wondering how closely the recovery will mimic the I/O. The first few days of that recovery were painful, but after that it wasn't too bad; just had to move around slowly and avoid strenuous activity. I was back to work in a few days and back in the gym ~3 weeks later. Sounds like this one will take ~2x as long to recover. The doctor has initially said they'll give me some special liquid to drink for a few weeks afterwards but otherwise should be able to have a normal diet; I'll ask more questions at pre-op this week. As long as I can do normal day-to-day stuff (albeit slowly) then I'll be fine.

                          And, to think, when this ordeal started I thought I'd never consider RPLND. My perspective changed once chemo was a real possibility. Still don't want the scar, but I can live with it; the photos people have posted here don't look nearly as bad as I feared they might so that gives some comfort. I have encouraged (and will reiterate) that I'd like him to seal the wound with dissolving sutures and skin glue rather than staples (if that's a viable option here). That's working really well for the I/O scar and, from what I've read, tends to result in a "better" scar than other ways to seal surgical wounds.

                          Comment


                          • #14
                            What do your oncologists say in terms of odd of relapse after RPLND?

                            I think I recall you said that you've been researching for some months now. When was the staging completed (CT scan, blood work) ?
                            Age 31 - Portland, OR
                            01NOV16- Pain in right testicle, palpable mass
                            13NOV16- R I/O. Markers normal
                            27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                            06DEC16 - CT scan clear
                            09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                            03JAN17- Ended 1xBEP; start surveillance
                            18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                            Comment


                            • #15
                              Originally posted by Arch View Post
                              I'm wondering how closely the recovery will mimic the I/O.
                              This is a much more extensive surgery. Most I/O's are outpatient these days, you will probably be in the hospital for several days to a week, depending on your docs & the facility.You will likely not be bedridden, but you also won't likely feel like doing much for a few weeks. You will probably appreciate it if you can have someone help with daily chores like meal prep, cleaning, etc. I know I did.

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

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