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primary rplnd for stage iiA seminoma anyone

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  • primary rplnd for stage iiA seminoma anyone

    Hi all, new here posting but lurker for over 1 year. amazing job you do.

    Husband has stage IIA seminoma after 1 year in surveillance. A patient in Sloan Kettering he is advised 4xEP or RPLND with sheinfeld and either 0 or 2 or 4xEP depending on post Rplnd path report. Most lileky scenario feels 2xEP.

    Primary rplnd for seminoma arent that common yet, mskcc seems to be pioneering. Has any one had it before? For those who had the surgery even with different tumour type, is it worth putting yourself through it to potentially save 2 cycles of EP?

    Any views greatly appreciated

  • #2
    RPLND for pure seminoma isnt new, I had it done at Shands Hospital in gainesville back in 2013 for pure seminoma
    its a rewards versus risk surgery, if you have chemo 1st then its like a sticky mess trying to remove lymph nodes
    after surgery. In my case I had RPLND and then 2 months later I still relapsed.
    So really what it boils down to is if you have the RPLND and get all the cancer great, if not then you will still have the option for chemo.
    keep in mind I am not a medical expert nor claim to be all knowing. Before I had my RPLND my case was reviewed
    by a tumor board to determine if the surgery was worth the risk. Another thing you need to understand is you Lymphatic system is very important to
    your immune system. So again you cut out say 40 node as in my case then you have a weakened system. For how long its weakened is not in my wheel house
    but on the other hand, if you remove all the cancer and do not relapse then that really a non issue.
    So what it boils down to is what is the best choice for you situation, as no 2 patients ever have the same situation.
    Just make an informed choice based on whats best for you and your loved one. No one will tell you if its worth it or not its entirely your choice.

    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan
    Jan 2017 3 years cancer free "Pet/CT scan
    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

    Comment


    • #3
      Sloan is one of the sites looking at primary RPLND in early stage seminoma as part of a study conducted by Dr. Daneshmand at USC in California. With either RPLND or EPx4, the expected outcome is nothing short of a cure. It really is what is the best decision for your husband and yourself? Some people wish to avoid chemo if they can and other wish to avoid surgery if they can so if those apply then that may affect your choices. There are also different risks as far as fertility concerns, if family planning is important. With a primary RPLND my main concerns would be with the experience of the surgeon and with Dr Sheinfeld, you have one of the most experienced RPLND surgeons in the world so you are in great hands there.

      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


      • #4
        Having had both, I would gladly do an RPLND to give myself a high chance of avoiding chemo entirely.
        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: begin 4xEP, end 9/18/15
        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!
        4/15/19: all clears up to this date!

        Comment


        • #5
          Good to see that RPLND is now a viable option for seminoma...
          July 2016 - Left I/O
          December 2016 - BEPx3
          All clear for 2.5 years now + new baby!

          Simplify Cancer: Man's Guide to Navigating the Everyday Reality of Cancer
          My Testicular Cancer Support Kit
          First Oncologist Visit Checklist
          Simplify Cancer Podcast

          Comment


          • #6
            Thanks all for the replies. His preference is RPLND and they are not guaranteeing no chemo after, it would be 0 or 2 or 4 cycles depending on path.

            Surgery is now booked and now my worry is that insurance will not preapprove it on the basis that is still unproven / experimental or some other stupid excuse.

            Thanks again every one

            Comment


            • #7
              RPLND happed today with Dr Sheinfeld and was successful - what a week of worry - now fingers crossed that no chemo is recommended or just two 2xEP instead of 4.

              This forum has helped a lot

              Comment


              • #8
                Glad he got through the surgery. This is a very good option to consider as it potentially spares people from exposure to really nasty drugs, which despite working miracles, can also really mess up our bodies. If I had done the RPLND first for Stage IIB non-seminoma, I probably only would have needed 2xEP rather than 4x, and probably wouldn't have had as many long-term and permanent side effects as I've had. My arms literally start burning when I type (like right now) which is from the 4xEP chemo 8 years ago!!! Doesn't stop me from cranking out a few thousand words when needed for one of my blogs, and have just gotten used to that and numerous other things for the most part.

                Here's to hoping for ZERO rounds of chemo and a permanent cure just from this alone. Good to know Dr Sheinfeld is still doing these. He's very very close to retirement. He did mine as well, back in 2011.
                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


                • #9
                  To be clear, S P's chemo side effects are more than typical. For me 4 years out of 4xEP, I have zero side effects that I notice on a day to day basis. The only two that I have at this point is potentially slight hearing loss, and then I do get very slight neurapathy on my hands and feet but it is so mild I have to focus on it to notice it.

                  But the chemo process itself sucks too and is another great reason, as well as potentially avoiding chemo induced cancers later in life. To me with my staging, I didn't have a choice, chemo was required to save my life. So it is what it is, I definitely bought myself a ton of time doing chemo, hopefully I bought myself a full long life (as is probable at this point being 4 year out all clear!)
                  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: begin 4xEP, end 9/18/15
                  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!
                  4/15/19: all clears up to this date!

                  Comment


                  • #10
                    To be clear, S P's chemo side effects are more than typical. For me 4 years out of 4xEP, I have zero side effects that I notice on a day to day basis. The only two that I have at this point is potentially slight hearing loss, and then I do get very slight neurapathy on my hands and feet but it is so mild I have to focus on it to notice it.

                    But the chemo process itself sucks too and is another great reason, as well as potentially avoiding chemo induced cancers later in life. To me with my staging, I didn't have a choice, chemo was required to save my life. So it is what it is, I definitely bought myself a ton of time doing chemo, hopefully I bought myself a full long life (as is probable at this point being 4 year out all clear!)
                    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: begin 4xEP, end 9/18/15
                    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!
                    4/15/19: all clears up to this date!

                    Comment

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