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  • Seminoma Reoccurrence

    Hello Everyone,
    Just a little background about me, I was diagnosed with IA Seminoma testicular cancer back in December 2015. Received an orchiectomy and they removed the cancer. I was placed on surveillance.

    Well September 29, 2020 they found two large tumors in my retro perineal lymphnodes 10cm and 11 cm wrapped around my Inferior Vena Cava and Aorta. My oncologist recommend 2 cycles of BEP, with a third on reserve if we need it.

    So comes the train of tests, scans, and blood work that followed. Well I started my first cycle of BEP on October 19. On day two I immediately began to have tingling in my extremities, and ringing in my ears. So they reduced the time in between Cisplatin and Etoposide. They also put my hands and feet wrapped in ice to restrict blood flow to minimize the damage from the drugs. Day 5 major nausea after treatment and was throwing up allot.

    So I am now on my two weeks of only Bleomycin. Only issue I has this week was some back pain, cramping, and some blood in the toliet bowl after a bowl movement. The oncologist was not to concerned, and told me to keep an eye on it, if it happened again to head to the ER.

    So now brings me to what brought me to post to the forum. Over the last 3 weeks this forum has been a place where I come to get information, and some comfort when I can't stop worrying about every setback that I have. It has helped me cope with all the terrible and negative thoughts that go through my head. I wanted to join this community because I want to be able to share my story in hopes that I too can help bring comfort to someone else going through this struggle.

    I look forward to this journey with you all.

  • #2
    Hi Doryman,

    I'm very sorry to hear about your reoccurrence. I'm wishing you the best as you tackle this phase and I truly hope there are fewer symptoms and setbacks as things progress. We're here for ya.


    • #3
      Thank you for your kinds words.


      • #4
        Welcome, Doryman.

        I am concerned that 2xBEP may be under-treatment as the standard of care in cases like yours is 3xBEP. After 2xBEP there will likely be a marked reduction of tumor, but round three seals the deal.
        Last edited by Davepet; 11-06-20, 06:36 PM.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP


        • #5
          After reading everything on this forum about BEP treatments, I am starting to agree with you. My marker levels are currently LDH 605, HCG 664, and AFP of 3.1. He put me in the good prognosis category as well. I'm going to speak to my doctor about 3 BEP treatments.

          Last time we spoke we have three scheduled, but he said we would see after two. He wants to check on the progress before we made a final decision to move to the third.

          In your opinion we should not wait we should just go for all three no matter what the scans, and blood say?


          • #6
            I agree with Davepet. Two cycles of BEP is likely undertreatment. Given the volume of your tumors I would do 3 cycles. My volume was less than yours and my onco immediately did 3 cycles wo any hesitation. Ultimately the decusion is yours, but I am certain that 3 cycles will cure you ... why take a risk of anything less ?

            -- Matt
            March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
            March 13th: Left IO 100% Classic Seminoma
            6.3 x 5.1 x 3.8 cm, no invasion of anything
            LDH never fully normalized
            Stage: IS
            Watchful Waiting
            May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
            May 12th: started 3xBEP
            Neupogen during Cycle 2 and 3
            July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
            August 4th: Post Chemo CT/PET scan
            September 4th: Port removed
            January 2020: 5.5 YEARS ALL CLEAR !


            • #7
              I absolutely agree with you all I'm going to insist on three! Thank you for the advice.


              • #8
                Yes. be an informed patent. Find the NCCN guidelines for testicular cancer and read them carefully and make sure your docs follow it. First and second occurrences/recurrences of TC have been highly studied and the NCCN recipe is the best chance of success.
                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!
                10/22/19: all clears up to this date!


                • #9
                  I will look into it right now. Thank you for the advice. Also did anyone begin to have pain in the other testicle during chemo? For the last two day I have been getting a slight pain in my groin, but I can't feel any irregularities with the testicle.
                  Last edited by Doryman; 11-05-20, 11:59 AM.


                  • #10
                    I wouldn't be too concerned about slight pain with a normal feeling testicle, but go ahead & mention it to your doc at the next visit.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP


                    • #11
                      Thanks Dave! Just went and got an ultrasound today, I will update you all with the results as I get them. I start my next BEP cycle Monday, not looking forward to it, but on a positive note my LDH is down to 188, and HCG to 76, AFP is still at 3.1.


                      • #12
                        Hello, Doryman. Your case is rather strange to me. You had seminoma 5yrs ago. Did you have elevated marker values then? These 10 and 11 cm tumors are really large; did you attend proper surveillance? Also, 2xBEP is out of standard protocol, 3x or even 4x BEP should be obligate. I'm just trying to exclude option that your doctor doesn't know what he is doing, maybe he has some advanced plan.
                        45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...


                        • #13
                          No my markers were not elevated until September of this year. As for proper surveillance the answer is no, I stopped going after the third year because I was stupid in thinking that I was fine. So probably around year 3 or 4 it spread. As far as treatment 3xBEP is on the calendar for treatment. I spoke with my doctor and after the 2nd cycle he wants to check my progress with a CT scan. I am getting blood results weekly to check all my blood counts and markers levels. So far my levels are returning to normal with only HCG being elevated. Also the pain I had in my back has almost completely disappeared which leads us to believe that the tumors are shrinking.


                          • #14
                            What? OMG. Did they do nodes biopsy now? These tumors are large and I think that it can be done without RPLND. This is no seminoma reccurence. This can be: completely new tumor from other testicle or from somewhere else in the body, or maybe reccurence of non-seminoma component from original 2015 tumor, that was missed on pathology examination. Did you do ultrasound for remaining testicle now?

                            It seems that chemo works, and that is good, I'm sure that you will be fine, still >99% chance of survival. But still, these issues should be resolved. I realy don't want to scare you, I just want to know that you get best possible treatment. I'm not sure are your doctors incompetent or they just want to spare you from details
                            45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...


                            • #15
                              I did get a biopsy it came back as pure seminoma, same as 2015. Ultrasound of the other testicle came back negative for any new cancer. Tumor markers are low, and the prognosis is good staging is 2. There is no growth in lungs or brain. The Pathology report, MRI , and CT results came back as a reoccurrence of the original cancer.

                              My doctor is actually a great oncologist, and is part of a group of doctors that are highly respected in southern California where I live. So far my treatment has been nothing but the best. I have not experienced any delays in treatment, and I have never been misinformed at anytime. In fact he calls me every week to check in, and gave me his personal cell to call him anytime I have an issue or question. He is following the NCCN guide lines exactly. As far as the doctor being incompetent, I am confused why you think that.
                              Last edited by Doryman; 11-08-20, 04:20 PM.