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  • Chemo or Surveillance?

    Hi everyone,

    I was diagnosed with TC and had my orchiectomy 4 weeks ago. Last thursday I met with my Urologist and according to the pathology report I have a stage 1 (he didn't told me whether I'm 1A or 1B - all my tumor markers are low and the tumor is contained), classical seminoma and no visible sign of metastasis. My doctor told me that as far as treatment is concerened, there are two options - either active surveillance or two cycles of chemo, and he referred me to a Uro-Oncologist that I'm due to meet in roughly 3 weeks from today.

    At first I was somewhat happy that I could, perhaps, choose surveillance over chemo and "be done with it", but then when my doctor told me that it involves a lot of radiation (due to the CT scans) and that there is 20% chance of relapse vs only 2% after chemo, it got me thinking whether I should pick Chemo instead (especially when he said that a relapse would incur 4 cycles of Chemo), which bring me to my question - how bad are two cycles of Chemo?

    Reading the treatment protocols I've learnt that this would probably involve only Carboplatin (unless the Oncologist says otherwise ofc), and I would like to know whether it's sufferable (if it matters, I don't live in North America...). I know each person has a different experience with Chemo, but I would like to know "how bad is it", if there are any long-term side effects, and other considerations I should have in mind.
    As vain as it may sound, I'm a grad student and I was already at the end of writing my thesis, and then this came along and my entire semester was pretty much thrown to the trash. My next semester starts around mid-March, and I would like to be done with Chemo by then and resume my life "where I left off" (as much as possible). If it helps, I'm in my twenties and I used to exercise regularly before my orchiectomy (swimming, Breaststroke in particular, 3-4 kmX3 times a week. In fact, I'm on my way to the swimming pool as I'm writing these words), would it help me recover faster? In general, is there anything I can do which makes Chemo more bareable? What short and long term side-effects should I expect and how fast do they go away after Chemo (if they do)? Are there any checkups one is usually asked to do before Chemo, or other things I should know before choosing this route?

    Thanks in advance!

  • #2
    Adjuvant chemo for pure seminoma should be carboplatin, I certainly would not entertain doing 2 BEP as adjuvant for this. Normally it would be one shot of Carboplatin , treatment done and dusted in a day with about a 5% relapse rate. It is sometimes given as a two cycle treatment with each cycle 21 days apart, to reduce the odds even further to around 2% but make sure you understand what you are getting and why and what the pros and cons are.

    I am not sure why he has said a relapse would be 4 cycles of chemo. The treatment of the relapse should depend on the details of the relapse. A standard 3 x BEP should still be available to you in the huge majority of circumstances I think.

    Side effects vary from person to person, but I had 2 Carboplatin and it felt like I was waking up after a real hard night on the beer for about 72 hours after (headache, lethargic, queasy if I moved), slowly improving after that. Probably back to 98% normal in a week. Second shot was slightly worse. My energy levels dipped and stayed a bit low for longer. They slowly returned over 3 to 6 months but it was easy enough for me to resume work a month after last treatment. No hair loss. No neuropathy. No long term impacts that I can identify.

    You will still need CT scans, even after carboplatin, itís just you wonít get quite so many. The schedules have changed since I did mine but I think you save a couple now.

    There is no wrong choice here, both choices (surveillance and treat relapse if needed v adjuvant and treat very rare relapses) lead to a near 100% cure as long as you do the follow ups. It comes down to your preferences. Do you prefer an 85% chance the op has cured you and if you are in the 15% who relapse then you will get 3BEP or do you want to reduce the odds of relapse to 5% or less but in the knowledge that there is an 85% chance you subjected your body to some chemo drugs that it didnít need. I chose the carboplatin at the time but now I know more about the odds and the treatments and am not in that ďoh @#&£ it is cancerĒ panic, if I had to do it again I would go for surveillance.

    Comment


    • #3
      There is no right answer -- it's a matter what risk tolerance you have and what your life situation is at the present. There is not good data (per my understanding) on "shorter" courses of BEP or carboplatin chemotherapy on LONG term effects of cardiovascular, metabolic risks. My understanding is that 1xBEP/carboplatin is much less "bad" than 3 times as would be for 3xBEP (dose dependent risks). The 3xBEP is studied over quite a long time and there is a measurable increase in risks of death from cardiovascular disease and related. The risk factor is something like 2x over the general population when doing 3xBEP.

      It should be said that 3xBEP is pretty long and difficult based on what I hear from others.

      I chose 1xBEP over surveillance because my 30-50% relapse rate wasn't acceptable to me. 1x carboplatin is literally a one-day treatment. The 1xBEP was 3 week and was like a bad flu with nausea. I would imagine a one-day carboplatin would be something like a 1-week recovery (to go back to gym/work etc).
      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


      • #4
        Thanks for sharing your experiences! At the moment I'm leaning towards Chemo, unless my Oncologist would suggest otherwise (I have an appointment on thr 12th). Thanks again!

        Comment


        • #5
          First, you really won't know what is recommended until you see your oncologist, but both of those options sound likely, however 1x carboplatin should be offered, which others here report as being fairly tolerable.

          At 20%, your chance of recurrence is really quite low already. I'm pretty sure I'd take the surveillance option if I were in that position, there is an 80% chance you don't need further therapy, and you will get a lot of scans with either option. To me, chemo is a bigger concern than scans, but that is me.

          The only risk is that if you recur, 3xBEP (or 4xEP) is the cure. I've done 3xBEP, it's no fun, but you get through it & are cured & life goes on. At least at that point you know you needed it to survive.

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

          Comment


          • #6
            Originally posted by Maedhros View Post
            Thanks for sharing your experiences! At the moment I'm leaning towards Chemo, unless my Oncologist would suggest otherwise (I have an appointment on thr 12th). Thanks again!
            I found this paper:
            "The long-term risks of adjuvant carboplatin treatment for stage I seminoma of the testis"

            The median follow up was 9 years.

            https://academic.oup.com/annonc/article/19/3/443/247637

            he median follow-up for the cohort was 9.0 years (range 0.1–20.1). There has been no excess in overall mortality [standardised mortality ratio (SMR) 0.89; 95% CI 0.36–1.83], death from circulatory diseases (SMR 1.44; 95% CI 0.39–3.69) or the incidence of second nontestis cancers (standardised incidence ratio 0.96; 95% CI 0.26–2.45) in this group of patients. These findings also applied to specific follow-up periods of >5 or 10 years. Specifically, neither haematological nor solid nontestis tumours occurred in excess. There was an increase in the long-term development of contralateral testis cancers.


            Also:

            http://www.sciencedirect.com/science...58767315003511
            Treatment Trends for Stage I Testicular Seminoma in an Equal-Access Medical System​ Results

            The use of adjuvant radiotherapy in this population decreased significantly from 2001 to 2011. In 2001, 83.9% of patients received radiotherapy compared with only 24.0% in 2011. During that period, a concomitant increase occurred in the use of chemotherapy from 0% to 38.0%. A later year of diagnosis was significantly associated with a greater rate of receiving chemotherapy relative to radiotherapy (P < .001 for 2006-2011 vs. 2001-2005; relative rate ratio, 19.3; 95% confidence interval [CI], 8.04-46.13). A later year of diagnosis was not significantly associated with the receipt of surveillance (P = .412 for 2006-2011 vs. 2001-2005; odds ratio, 0.83; 95% CI, 0.54-1.29). Black race or age was not significantly associated with adjuvant therapy. With a median follow-up period of 4.7 years, the 5-year overall and recurrence-free survival rates were 98.0% and 77.0%, respectively.

            Conclusion

            The use of adjuvant radiotherapy has been replaced by chemotherapy for clinical stage I testicular seminoma in an equal-access system. The lack of an increase in active surveillance in our cohort might represent overtreatment of the population.

            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


            • #7
              One other thing came to mind. Was your pathology done by a GU pathologist? I've always wondered in cases of pure seminoma how confident they are that there isn't 5% non-seminoma that wasn't detected in the slices they did. And of course, the implication is that if there is 5% non-seminoma is 1xcarboplatin sufficient.

              I got a second opinion on my pathology by a GU pathologist and it changed from 100% embryonal cell to 90% EC/10% seminoma.

              Also, while it's not exactly clinically relevant in treating your cancer, it may beneficial to ask for testosterone level test before chemo. Also you would probably be best to do sperm banking in case you wish to have a child with "pre-chemo" sperm.
              Last edited by mcintoda; 11-26-17, 11:11 PM.
              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


              • #8
                I didn't think a 15-20% relapse risk sounded bad, but liked 3-5% better...

                I opted for the single dose of Carboplatin. Felt hung over, lethargic, little quesy but not bad, etc. for exactly 6 days. Day 7 felt like new again. Threw up once but I think it was more what I ate than anything chemo related.

                Getting over the mental crap was harder than any of the surgery or the carbo.

                Comment


                • #9
                  Wishing you the best for your decision. Let us know.
                  Son Grant
                  dx 12/21/16 at age 17

                  BEP x3
                  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.
                  Grant is enjoying his senior year in High School Cancer Free!

                  Comment


                  • #10
                    I'm set to meet my Oncologist on the 12th of December. At the moment I'm leaning towards Chemo as I preffer 2% of recurrence over 20% (my tumor was rather large and hence it means that it probably developed for quite a while - that's why I'm not that comfortable with surveillance, unless my oncologist would say otherwise). I do plan on writing a "Carbo diary" on my second cycle, as I found only one testimony (thanks Mark! ).

                    At the moment I'm exercising like hell since my doctors told me that the fitter I am, the "easier" Chemo will be. Again, thanks everyone!

                    Comment


                    • #11
                      After meeting my Oncologist, he suggested that I should choose surveillance over chemotherapy. He said that as the pathological report indicated some rete testis involvement, 2XCarboplatin now might not be as effective as surveillance and 3XBEP if the need ever arose. To be more precise, my first CT-Scan (done 3 days before my orchiectomy) showed that there might be some enlarged nodes in the retroperitoneum. My Oncologist said that if this is indeed the case then 2XCarbo simply wouldn't be as effective now as 3XBEP would be later on. So in other words, I'm on active surveillance...

                      Comment


                      • #12
                        Take this for what it's worth (it looks like you've already chosen surveillance) but I've seen enough guys over my 7 years in the TC scene still have recurrences after carboplatin for Stage I seminomas to give me pause. Moreover, when there's a recurrence with seminoma after carbo, I've seen it tend to be a rough fight where even BEPx3 isn't enough. I've seen this more than once. I know what the data says, but I personally don't believe that carboplatin for Stage I is as effective as the numbers suggest, and this is one of the few treatment options in all of the TC realm that just doesn't add up for me. So for Stage I pure seminoma patients, I say take the 80% odds that you're already cured and just do surveillance, and if there was really anything left, carbo might not have been enough anyways, so just do BEPx3 should the need arise and be done with it. "Virgin" cancer not exposed to any other platinum agent responds better to full bore BEPx3, me thinks.

                        Sloan-Kettering wrote a paper about this, and they tend to not favor carbo: http://ascopubs.org/doi/full/10.1200/jco.2010.29.5055

                        Young Adult Cancer Survivorship by Steve Pake
                        April is Testicular Cancer Awareness Month!
                        www.stevepake.com
                        Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
                        My Survivorship Thread | All of my Blogs
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                        ONTACT ME ANYTIME!

                        Comment


                        • #13
                          Thanks. My doctor said something similar - that even though I was stage I, my tumor wxas relatively big and that he doesn't think 2XCarbo would be as effective as surveillance and 3XBEP (if needed). When I entered his office I was already mentally prepared to go through the 2XCarbo, but I changed my mind/

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