Announcement

Announcement Module
Collapse
No announcement yet.

It's Time to Decide on Treatment: Stage 1b, 100% EC

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • It's Time to Decide on Treatment: Stage 1b, 100% EC

    Stage 1b, Pure Embryonal Carcinoma

    10/26: Pre-Op Tumor Markers Normal (LDH 170; HCG <1; AFP: 1.0)
    11/9: Right I/O
    11/4: Pathology report (tumor 2 x 1.3 x 1.1 cm; extensive lymphovascular invasion; rete testis invasion; clear margins)
    11/20: Clear CT Scan (one, 3 mm lung nodule that appears characteristically benign)
    12/11: Post-Op Tumor Markers Pending (assuming normal, if not, obviously BEP x3)

    I'm seeing a fantastic oncologist who has shared many patients with Dr. Einhorn in the past. Dr. Einhorn also recommended I see her. She has treated hundreds of men with testicular cancer and seems up-to-date with the data.

    RPLND
    There are two high volume surgeons she generally refers out to, but for my case she does not see this is an option. Neither does my urologist. I tend to agree.

    Survellience vs. BEP x1

    I was very surprised to learn that she recommended surveillance for my case. She tells me there's a 50/50 chance of recurrence, which Dr. Einhorn agrees with. My research tells me the same. My oncologist is also a bit worried about the toxic affects chemo may have on my history of pre-hypertension, but it's not a deal breaker. She also states the difficulties that come with more BEP following a slim but potential chance of relapse after BEP x1. She states this relapse potential as 10%. Dr. Einhorn in his emails with me states it as 1%. Some discrepancy there.

    As I'm nearing the 6 week mark, I'd like to make a decide soon. My oncologist is on-board with whatever I choose and can schedule me for chemo as soon as next Monday. I've done ungodly amount of research on this and am still split equally between the two choices. I'd love to get some opinions. I know I'm in great shape and that my chances of cure are 99-100%.

    How would I fare with the long-term effects of toxicity following BEP x1 now vs BEP x3 later should I choose surveillance? Are the effects generally 3-fold?

    These are my thought processes. Thanks in advance for any advice.

    EDIT: Also curious as to how long is too long before starting treatment? I have read 6 weeks. Should I choose BEP x1, it will be around 6.5 weeks since surgery and 5 weeks since clear CT scan. This comes at a weird time with Christmas and New Years; will treatment be pushed forward on these days?
    Last edited by ByeByeMrRighty; 12-17-17, 10:04 AM.

  • #2
    With 100% Embryonal & L/V invasion, It's 50% chance of recurrence. I'm unconvinced that adjuvent treatment has any value, mostly because it is impossible to tell how many never needed it, which tends to make the success rate look better. JMHO.
    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      I personally wouldn't rule out the RPLND. With the relatively higher recurrence rate with 100% EC and Stage IB, and concerns about potential issues from any chemotherapy, it's a very good option. Check out my blog about this, linked in my signature.
      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
      C
      ONTACT ME ANYTIME!

      Comment


      • #4
        I agree that RPLND is definitely an option. Regarding the toxicity of 1xBEP vs 1/3 of 3xBEP, I asked Dr Hanna that question. He said that he could make a plausible case for 1xBEP being worse than 1/3 of the toxicity of 3xBEP and here could also make a case for it being better. And, he wasn't even sure enough to posit an opinion on the matter. If he doesn't know (this was 1 year ago), then I think nobody knows. Do, it's just a "known unknown" in this decision process. I know it's a really important one, but we just don't know yet.
        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


        • #5
          I suppose it is a good dilemma to have the options for treatments but it does make the decision making more difficult. From what I have seen the relapse rate with BEPx1 is certainly less than 5% so probably not as high as the 10% that you were quoted. That is just based of of https://academic.oup.com/annonc/arti...11/2167/139799 Also Dr. Feldman at Memorial Sloan Kettering has a nice review of the options at: http://ascopubs.org/doi/full/10.1200/jco.2014.56.8006 These are just two pieces and certainly not exhaustive of the literature but you may appreciate them if you haven't seen them.

          I think it is splitting hairs a bit but the risk of relapse with primary RPLND with a skilled surgeon may be a tad bit higher than with BEPx1. The advantages with the RPLND is that they will know for sure what is going on in the abdomen as they will be looking at the nodes, it also means that you could end up needing some chemotherapy after the RPLND if there are nodes involved.

          If they started BEPx1 next week, then I would assume they would go for Monday-Friday and then give you the bleomycin on Tuesdays the following weeks just to avoid the Holidays on Mondays and that certainly is not an issue.

          As far as surveillance, this is certainly an option as well and as mentioned there is a 50% chance you are already cured, there is also a 50% chance that you will relapse. There is basically 100% chance that you will survive so it is just a manner of what you are willing to endure and when, to get there. Most nonseminomas relapse in the first two years, although later relapses are obviously possible. I would look at your lifestyle, etc. and ask is it better for me to stop now for 3 weeks and get chemotherapy to reduce my risk vs. if I relapse in the next few years am I going to be able to stop my life for 9 (maybe 12) weeks to receive chemotherapy?

          I would look at how concerned I am with the ability to have have kids as chemotherapy and a small chance RPLND can cause issues there. There isn't a lot of time between now and Monday to bank sperm if that is of great concern for you. The effects of BEPx1 may not be that great on fertility but the caution first route would be to bank sperm first and after chemo it is going to be advisable to wait 1 if not 2 years to try to have children.

          Lastly, I would look at my personality. Am I the type of personal that if I chose surveillance and relapse then I'll deal with the relapse then, no big deal. Or, am I the type of person that is going to beat myself up and have regret because I chose surveillance and relapsed? Also, am I the type of personal that is going to freak out and be affected by tremendous anxiety during surveillance because I know I "didn't do everything that I could" at first to reduce my risk of relapse. In these later situations, then surveillance my not be the best option.

          Mike
          Oct. 2005 felt lump but waited over 7 months.
          06.15.06 "You have Cancer"
          06.26.06 Left I/O
          06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
          06.30.06 It's Official - Stage I Seminoma
          Surveillance...
          Founded the Testicular Cancer Society
          6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

          Comment


          • #6
            Originally posted by unotesticulo View Post
            I agree that RPLND is definitely an option. Regarding the toxicity of 1xBEP vs 1/3 of 3xBEP, I asked Dr Hanna that question. He said that he could make a plausible case for 1xBEP being worse than 1/3 of the toxicity of 3xBEP and here could also make a case for it being better. And, he wasn't even sure enough to posit an opinion on the matter. If he doesn't know (this was 1 year ago), then I think nobody knows. Do, it's just a "known unknown" in this decision process. I know it's a really important one, but we just don't know yet.
            Correct. They're not sure how much different the long term side effects are or would be from BEPx1 vs BEPx3, due simply to not having enough long-term data yet. Eventually they'll have data on that.
            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
            C
            ONTACT ME ANYTIME!

            Comment


            • #7
              I'd go with RPLND. 1 x BEP was quite brutal for me. And the unknowns are scary. With RPLND, the only side effect may just be the scar.
              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


              • #8
                Thanks Davepet, S P, unotesticulo, Mike (in particular for your detailed response!), and RJKD for all the input. I truly appreciate all the responses.

                Not knowing the difference in toxicity between BEP x1 vs. BEP x3 is something I'll have to accept for now. Einhorn got back to an email of mine and said: "There would be more ototoxicity and neurotoxicity with BEP X 3 versus BEP X 1 . Unknown if any difference in risk , which is very low, of cardiotoxicity or second malignancies."

                I think RPLNDs have been a bit undervalued in high risk stage 1 cases - maybe oncologists don't feel comfortable in sending their patients across lines state lines as they see it as overkill for stage 1 patients - I'm not really sure.

                As for surveillance, relapse with 100% EC would occur sooner than later. Of course, it could reccure past two years, but more likely within year one. That's a good thing in my opinion.

                I'm really on the fence with all three options, and am slightly leaning toward surveillance as per the original recommendation from my oncologist and in emailing Dr. Einhorn. I know there's no right answer and that I could find ten other oncologist who disagree. I'm getting a second opinion this Thursday and maybe I'll learn something new. I'm also approaching the six week mark from the original I/O so I'll be decided by the end of the week. Either way, I know my cure rate is very high at around 99%, and I'll feel better when a decision is made. P.S. I was trying to attach my pathology report but it won't work lol wth

                Thanks.
                Last edited by ByeByeMrRighty; 12-17-17, 10:07 AM.

                Comment


                • #9
                  Originally posted by RJKD View Post
                  With RPLND, the only side effect may just be the scar.
                  And, you know, retrograde ejaculation.

                  Comment


                  • #10
                    Originally posted by shabby View Post

                    And, you know, retrograde ejaculation.
                    Very unlikely with an experienced surgeon. We're talking in the order of 2-3%.
                    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
                      There's always a risk to fertility whether from chemotherapy or RPLND, which is why sperm banking is recommended either way. When done in a pre-chemotherapy setting and as a primary means of treatment, however, a nerve sparing RPLND can be successfully done almost all the time when done by an expert. In the pre-chemotherapy setting, a robotic RPLND can also be done as opposed to a full open procedure, with a much smaller scar and faster recovery time.
                      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
                      C
                      ONTACT ME ANYTIME!

                      Comment


                      • #12
                        RPLND is not very effective for pure EC.
                        With Stage1b 100% EC, I would recommend you to do BEP x1.

                        I was stage1a 100%EC last year and then chosen surveillance, but relapsed after 6months. If I need to choose it again, I will still choose surveillance given that it is stage1a. For stage1b, I properly won't choose surveillance. BEP x1 is not a big deal, with compare to BEP x3.

                        However, if you do surveillance, you need to do frequent medical check. EC growth very fast.

                        30/12/16 2.5cm on right testis, 6mm on left testis.( B-HCG 0.34 <2,AFP 4.5 <7)

                        24/01/17 Right I/O
                        (Pure embryonal carcinoma, no lymphovascular, no invasion of tunica albuginea, rate testis, epididymis, spermatic cord. )

                        14/02/17 AFP 2<7, 6mm on left testis
                        17/02/17 Survelliance
                        06/03/17 CT scan (Visible lymph nodes in the mediastinum . probable benign reactive appearance)

                        28/07/17 AFP 35 (normal 7), relapsed confirmed
                        04/08/17 CT scan (new metastatic para-aortic lymph node 1.6cm AP1.5cm)
                        10/08/17 Start 3 BEP, AFP201 (normal 7)
                        06/10/17 End of 3 BEP, AFP3 (normal7)
                        17/10/17 CT scan
                        27/10/17 Prev left para-aortic lymph node not seen. AFP2(normal 7), B-HCG <2, LDH 208( normal 118-220)

                        Comment


                        • #13
                          Originally posted by hinear View Post
                          RPLND is not very effective for pure EC.
                          Not entirely true. However there *is* an increased risk of missing cancer that may have spread via the bloodstream instead of the lymph system.

                          Dave

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

                          Comment


                          • #14
                            Originally posted by hinear View Post
                            RPLND is not very effective for pure EC.
                            With Stage1b 100% EC, I would recommend you to do BEP x1.

                            I was stage1a 100%EC last year and then chosen surveillance, but relapsed after 6months. If I need to choose it again, I will still choose surveillance given that it is stage1a. For stage1b, I properly won't choose surveillance. BEP x1 is not a big deal, with compare to BEP x3.

                            However, if you do surveillance, you need to do frequent medical check. EC growth very fast.
                            Understandable considering you relapsed as have many others on this forum, but I think it's important to understand confirmation biases at play. This forum draws the people that relapse and the ones who don't never post here.

                            50% chance of recurrence is 50%. Those are relatively okay odds to avoid treatment all together. And when people like Dr. Einhorn, who was a pioneer for bringing chemotherapy to the forefront, recommends surveillance for allstage 1 patients, I take that very much to heart although I know it's no guarantee. He understands the nuances we might not. As for pure EC, stage 1a and 1b aren't tremendously different.
                            Last edited by ByeByeMrRighty; 12-20-17, 03:18 AM.

                            Comment


                            • #15
                              Originally posted by ByeByeMrRighty View Post

                              Understandable considering you relapsed as have many others on this forum, but I think it's important to understand confirmation biases at play. This forum draws the people that relapse and the ones who don't never post here.

                              50% chance of recurrence is 50%. Those are relatively okay odds to avoid treatment all together. And when people like Dr. Einhorn, who was a pioneer for bringing chemotherapy to the forefront, recommends surveillance for allstage 1 patients, I take that very much to heart although I know it's no guarantee. He understands the nuances we might not. As for pure EC, stage 1a and 1b aren't tremendously different.
                              Confirmation bias is definitely a thing here on this forum.

                              The other reason why centers generally prefer surveillance is because they are working to reduce statistical over-treatment. A person who elects to go on surveillance instead of 1xBEP and then needs 3xBEP is not considered over-treated by 2xBEP. However, a person who does 1xBEP who actually was part of the portion that was already cured, is considered over-treated. Correspondingly, if the percentages receiving adjuvient treatment are greater than the chance of recurrence that population is statistically medically over-treated and some received unnecessary treatment. That, combined with the fact that once on regular surveillance, relapses are caught quick enough to be low to moderate stage and have very high probabilities of being cured by 3xBEP/4xEP, give Dr. E the assurance that he is not reducing patient's chance of cure by recommending initial surveillance.
                              6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                              6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                              7/7/15: bHCG 56, AFP 42, LDH 322
                              7/13/15 - 9/18/15: 4xEP
                              10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                              10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                              4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                              4/20/16: RPLND @ IU - teratoma only!
                              9/27/2018 all clears up to this date!

                              Comment

                              Working...
                              X