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Potential Round Two

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  • #16
    The results are in: a 1.1 cm embryonal mass with lymphovascular invasion and two smaller seminoma masses. My CT scans were clear and markers normal. I'm sitting now at stage 1b. Because I had 3xBEP eight years ago, the oncologist is concerned that the pre-cancer to this tumor may've been present at that time and developed a resistance. This is just theoretical, but a concern nonetheless. My options seem to be surveillance with a 50% chance of recurrence or 1-2 cycles of BEP now to reduce that chance an unknown amount. The oncologist is leaning towards surveillance because of his concern about resistance and minimizing my toxicity exposure. If it does recur, I'd likely do a TIP regimen instead of BEP. I'm pretty torn what to do. It's an unusual scenario without much precedent.


    • #17

      Sorry about a second primary. I don't have an answer for you, but I do have a question: Is 2xBEP even an option considering that there is supposedly a lifetime maximum exposure to Bleomycin ?... in which would have been met in 4xBEP for example.

      Eight years would be a pretty long time for that tumor/cells to be sitting in the remaining guy since your 1st primary. I would think it would be a completely new primary and have the same % chance of being resistant as any other 1st primary that all of us had had. In other words no more of a chance at being resistant then your first. That's just my take anyways. However, if I were in your shoes I know that thought would be going through my head.

      Regarding toxicity: I think that TIP is more toxic then BEP. I'd inquire about that.

      - 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
      Jan 9th 2019: 4.5 YEARS ALL CLEAR !


      • #18
        Sorry to hear about the pathology. Who did you meet with for the oncologist? Did you meet with Darren Feldman?

        I too would be surprised that it was there from 8 years ago but I'm not a medical oncologist either. If resistance was a real possibility then waiting to treat relapse would appeal to me more than trying BEPx1 as an adjuvant therapy.

        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
        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 [email protected] if you would like to chat privately so as to avoid any delays.


        • #19
          I'm sorry. I know you are at Sloan, but i would still email Dr. Einhorn if you have not [email protected].
          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.


          • #20
            I believe Matt is right about the lifetime limit on bleo. I would definitely get another opinion before going there. TC is not known to travel from one testicle to the other, I suspect your doc is incorrect about that, I second getting Doc E to weigh in on this.

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


            • #21

              I'm sorry to hear that you are going through this again, but your not alone as I am also in a very similar situation as you. I was all clear for 9 years after 3 x BEP and then found out I had a mass in the other testicle. I had slightly elevated bHCG which prompted the US and then the I/O was done last week. I'm still waiting on pathology and follow up blood work.

              My oncologist stated to me that BEP is not an option this time around, he didn't go into details, but I believe the reason to be the bleo exposure.

              If you don't mind keeping us (me) in the loop I would greatly appreciate it as I'm curious what the doctors at Sloan think. I'm working to get scheduled with Dr. E soon so he can weigh in and I would be more than happy to share his thoughts on our similar situation. Just via email he has told me that 2nd primary is not treated as recurrence and provided its stage 1 would still carry a high degree of cure.