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  • Surveillance on 1B

    Hi,
    My name is Troy and I was hoping to get some opinions of fellow tc patients.

    On the 22nd of may 2017, i had raised hcg, other markers were normal. Ct scan was clear. i was diagnosed with tc and had r/o on the 23rd May 2017. My pathology from stanford is mixed germ cell with (60%seminoma, 25%embryonal carcinoma, 10%teratoma and 5%yolk sac, rete testis and lvi invasion). One week after orchiectomy my hcg and all markers were back to normal. This puts me in the 1B stage and both the oncologists and urologists i've seen are suggesting surveillance opposed to 1x bep. I have seen a lot of people say at 1B they have had 1 x bep but i would love to know if there are any people out there to share their story on choosing surveillance with a 1B diagnosis and reaching the all clear? The doctors are saying i have a 30%chance of relapse but other articles suggest 50% given rete and lvi. Surveillance seems to be being pushed more than anything these days regardless of 1a or 1b

  • #2
    I did 1 x BEP, but I had a 50% chance of relapse. Surveillance is almost always pushed by doctors. In Norway/Sweden 1 x BEP would be recommended over surveillance in your case. Their reasoning is that they want to avoid using the highly toxic higher doses of chemotherapy in a person who has such a high risk of relapse. You have a 50% chance of relapse. Surveillance is a perfectly viable option for the right patient. Indiana University would recommend it as their first choice, but would also ensure that each patient knows that 1 x BEP and RPLND are viable options. I would actually do RPLND in your case. But that's me. I hate chemo.
    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


    • #3
      Thanks heaps @RJKD,
      I appreciate you responding to the post and your opinion. 50/50 sounds like such a big gamble but i guess they are just the options. I'm currently in america and they are saying for adjuvent it will be 2x bep so i don't even have a heap of confidence in the docs opinion as various studies show adjuvent 1x bep to be a huge help for clients with my exact case (1b) with lvi. Just looking for a slice of inspiration from someone who has dodged relapse on 50/50 odds.

      Comment


      • #4
        50/50 is not good odds or bad odds, technically even odds. I would not allow 2xBEP if I were facing the same odds.I probably would take the risk & avoid further treatment unless proven necessary by later testing under surveillance. The difference between 2x & 3x in terms of short & long terms side effects is likely negligible. Might as well take your chances & hope for the best. To me, avoiding potential long term problems from unneeded treatment is better than over treating in the hopes it's enough. That is my way of looking at it, every guy is different on how they handle these things.

        The type of person who is going to think "recurrence" every time there is any sort of medical issue, probably should get further treatment. The sort who realizes other issues are likely to happen & are not necessarily TC related probably will do better to take the bet. You will survive with either decision, you are really deciding how much poison you want to subject your body to. I would opt for none & hope. Just me.

        Dave

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

        Comment


        • #5
          Troym ,

          I did 1xBEP as a way to avoid 3xBEP later. My risk was probably lower than yours as I have CSIa. Two oncologists told me to do active surveillance, two oncologists told me to do 1xBEP. Einhorn told me to do active surveillance. I'm risk averse and I'd rather take a little poison to avoid a lot more. I also got diagnosed right before Christmas and the timing of doing 1xBEP over x-mas break was suitable for my work life; further, my father was available and helped at home.

          Remember that one of the physician's goal is "do no harm." By giving everyone active surveillance the overall number of people they over-treat (aka harm in a way) is lowered. For you, individually, though, the calculus is different.

          I'm afraid it comes down to your risk tolerance and life situation. All options are good and will likely lead to a cure. For your mental well-being, I recommend to pick an option and then move on with life without looking back.

          Commentary on the options (not a doctor):

          Active Surveillance (AS). Still, with 1xBEP I do check-ups every 2 months. They are a minor inconvenience at this point. For me, the worry of recurrence would make me risk adverse: not take a new job if it arises, not take risks with entrepreneurship, etc. I think it's fairly clear that AS is effective at catching a relapse in time for a high chance of cure (e.g. > 95%).

          1xBEP is relatively well tolerated, relatively short course. But the long-term risks of metabolic, cardiovascular issues and secondary cancer is probably not studied enough yet. It's logical that even 1xBEP can increase these risks.

          If you're unlucky and need 3xBEP: it is quite long and difficult as I understand. Same as above but worse. If you need this ok, you do it and get it done. It's very effective, except against teratoma.

          RPLND: Sounded scary to me, but after reading now people's experiences it seems to be on par with 1xBEP in terms of the down-time and difficulty. RPLND has some risks about retrograde ejaculation (1% or so) but doesn't have those long term down-sides. I did see on the forum some folks had surgery later on to correct bowel obstructions related to RPLND (scar tissue is my understanding). It has the added benefit to giving you pathological confidence in "what's in there",


          I would recommend talking to a surgeon about RPLND to understand what the risks and benefits are. Robotic and laparoscopic options exist, but the opinions on these differ. I'm not clear what insurance covers either. If the guidelines call for AS, do you have even have an option for RPLND?
          Last edited by mcintoda; 06-25-17, 02:59 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


          • #6
            If your docs are saying 2 x BEP if adjuvant is the choice, then I can understand why they recommend surveillance. I would do surveillance too in that situation. Your doctors need to get with the times though. 1 x BEP is the max at this point for you!

            Mcintoda, I'm curious, how did Einhorn make his recommendation to you? Was he strongly for surveillance? I can understand more of a surveillance approach for stage 1a folks. But I k ow many doctors that still recommend 1 x BEP in your case. Also, are you based in Canada? For some reason I recall you mentioning that. They tend to be pro-surveillance for all stage 1 patients up there.
            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


            • #7
              Hi Troy, I was 1A with majority EC. Even there (which has slightly better odds than 1B), Einhorn (by e-mail) and Hanna (in person) laid out all 3 options (surveillance, RPLND or 1xBEP -- Einhorn emphasized that 2xBEP is NOT a reasonable option) as good options without pushing for surveillance. Hanna said that their "institutional bias" was to favor RPLND over adjuvant chemo. I think that is due to the extremely high quality of the RPLND-surgeons they have available in house there.

              I did some reading about the risks associated with 1xBEP. It seems that the people that were dying after the 1xBEP adjuvant option were actually more often from a second occurrence of TC (still a worry if you've still got one ball). The point is that if the TC comes back or hits the other ball, you've already got 1xBEP under your belt, so when you need 3-4 more, your risks go up. Of course, this is not a likely outcome, but something to weigh.

              I am very happy with my choice of doing RPLND (robotic, against the IU docs' suggestion -- a different discussion). Of course, if I relapse, I'll be wishing I did that 1xBEP. It's only 7 months out now, but those chances go down with every all-clear.

              The up-shot in my opinion: RPLND vs 1xBEP is a completely justified debate. Now that 1xBEP is more normal, in 30 years we'll have real data about its long-term effects. For now, that's very hard to answer. That said, I cannot reasonably see why a healthy young man (living in a place with a good RPLND-surgeon) would choose surveillance over RPLND. If you have a good surgeon, the risks associated to the surgery are truly minimal. It cuts your chance of needing chemo, and leaves you being chemo-naive in case you do need chemo later. RPLND is painful, sure, but we're talking cancer here. We're talking pumping poison into your body that adversely effects every system in the body for the rest of your life. If you have to suffer recovery from surgery for a month or two, it just seems worth it to me. So, I encourage either the 1xBEP or the RPLND.
              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. They say I still have a 10% relapse chance.
              5/9/18 One and a half year all clear.

              Comment


              • #8
                Just to further what unotesticulo did about the risks of 1 x BEP. In terms of short term risks I can tell you what I've seen in the literature and on this forum. I've seen one man die from a neutropenic fever. One man got a stroke in his first cycle. He was on this forum. I've seen a couple of men get heart attacks and survive (case reports in the literature). In the large Swenoteca study of about 500 patients having 1 x BEP, one man got AML 2 months after the chemo.
                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


                • #9
                  The chances of needing more chemo after 1 x BEP due to a relapse was shown to be 1.3% in a study done this year in the U.K. Another 1.3% that relapsed after 1 x BEP were treated successfully by RPLND.
                  http://ascopubs.org/doi/abs/10.1200/...35.6_suppl.400
                  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
                    The above study does not break it down into stage 1a or 1b though.

                    The major impediment for me recommending 1 x BEP to more people without hesitation is the Etoposide dose. That's the most worrisome drug and I really don't want someone exposed to it unless they have to be. Having said that, if you have a 50% chance of needing 3 x an adjuvant dose, that also worries me! Researchers have tried to decrease the dose, but efficacy is always affected by this. Etoposide so far is a critical element of the cocktail.
                    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


                    • #11
                      Thanks, RJKD, you're always awesome with providing the stats. I just wanted to add that you're talking about recurrence of the same cancer. There is still the ~2%(? -- I was never confident in this number) chance that we bear of cancer in the other testicle. For me, after reading the only long-term (10 year, I think it was) study I could find on 1xBEP, the importance of being chemo-naive if you get the cancer in the other testicle became an important factor. When we're talking about 1.3% relapse risk, the 2% risk and the implication of first-round treatments on that, become meaningful. I have seen scant data on the impact of having already had 1xBEP years before dealing with TC in the contralateral testicle. Perhaps I'm a bit much of a worry-wart, but that was an important part of my thinking.
                      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. They say I still have a 10% relapse chance.
                      5/9/18 One and a half year all clear.

                      Comment


                      • #12
                        There was a 15 year follow-up that used different doses for 1x BEP. But the study was small.
                        https://academic.oup.com/annonc/arti...clinical-stage

                        The largest follow up is actually from the Swenoteca group. Overall, I haven't noticed any problem so far with 1 x BEP in terms of causing problems for treating a second primary.

                        Having said that, I have thought of if a testis biopsy would be useful. If I can catch something before it becomes cancer, I'd like to do that!
                        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
                          Originally posted by RJKD View Post
                          If your docs are saying 2 x BEP if adjuvant is the choice, then I can understand why they recommend surveillance. I would do surveillance too in that situation. Your doctors need to get with the times though. 1 x BEP is the max at this point for you!

                          Mcintoda, I'm curious, how did Einhorn make his recommendation to you? Was he strongly for surveillance? I can understand more of a surveillance approach for stage 1a folks. But I k ow many doctors that still recommend 1 x BEP in your case. Also, are you based in Canada? For some reason I recall you mentioning that. They tend to be pro-surveillance for all stage 1 patients up there.

                          My oncologist contacted Einhorn via email. The second hand info I got was that CSIA pure embryonal cell was 30% relapse rate at Indiana database (this differs from Princess Margaret Studies; numbers relatively small though). So for "that low" of a relapse rate he reccommended surveillance. RPLND wasn't discussed/offered to me probably b/c I was in an HMO without experienced surgeons when I got diagnosed. I'm not Canadian -- I got diagnosed and treated in Portland, OR.
                          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


                          • #14
                            Hi Troym, I had pure EC in May 2015 and 2xBEP as adjuvant was suggested by my docs. I have contacted Dr. Einhorn if I can do the surveillance only and he confirmed surveillance. Tomorrow I am going to have my regular check at oncology.
                            04/24/2015 – pain in the right testicle – USG confirmed mass, blood results B-HCG = 12 U/l, AFP = 6.14 ug/l, LDH = 9,
                            05/05/2015 – I/O (100% Embryonal carcinoma, LVI presented)
                            05/06/2015 – post-operative CT scan negative, 2xBEP suggested
                            6/2015 - surveillance (my decision)
                            7/2015, 9/2015 - markers negative
                            9/2015 - 2nd CT negative, 6 months later CT re-checked and found one node which measured 16x12mm
                            10/2015, 1/2016, 2/2016 - markers negative
                            2/2016 - 3rd CT scan - 2 nodes (border) - 12x8mm, 13x9mm
                            3/2016, 5/2016, 8/2016, 11/2016, 2/2017 - markers negative
                            2/2017 - 4th CT scan - 11x7mm (was 12x8mm) and 8x5mm (was 16x12mm)
                            7/2017 - markers negative

                            Comment

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