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4 weeks post RPLND - pains everywhere

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  • #16
    Thanks tammmy for your input.

    just a thought crossed my mind. I believe I read somewhere that a left testicle tumor should affect only the left side nodes of the body and now the argument is wether to remove the right external iliac lymph node? Is this normal ?


    • #17
      I think yes, it should be on the left side but I think since they tend to do bilateral RPLND post chemo, I guess they know it can sometimes spread beyond the expected "metastasis template". Not sure if it would go onto right iliac side and not on like lungs first, but to be honest I think in terms of late relapse they collectively know very little.

      Hey I know it is difficult not to worry but your AFP "rise" is small and slow and if the node keeps on shrinking or remains steady for a while maybe you have time to monitor it a bit and even seek additional opinions if needed. Do update on your progress.
      07/2014 husband found a lump
      07/2014 Right O/I, non-seminoma, yolk sac + immature teratoma
      07/2014 CT scans shows numerous lymph nodes in stomach and RP, biggest one 1.3 cm
      08/2014-10/2014 3XBEP
      11/2014 First all clear!
      04/2015 Paraortic mass 1.7 cm - only lymphocelle! Gone on the next scan.
      12/2020 AFP 5.4 (should be <8)
      07/2021 AFP 9.2, radiology clear
      09/2021 AFP 10
      01/2022 AFP 18.6, radiology clear
      05/2022 AFP 21
      10/2022 AFP 38, radiology clear, including PET
      04/2023 AFP 61, 1.7 cm paraortic mass, PET negative.


      • #18
        I am glad to hear that you have been in contact with Dr. Einhorn and that he has reiterated not to worry about the AFP<25. I am also glad that the PET results in the bowel are thought to not be related to the testicular cancer. That is the issue with doing PET scans is that they can turn up all sorts of things that are not related. That is CT scans are simply done. Unless you had extensive right-sided retroperitoneal disease it would be rare for a left-sided testicular cancer to show up in a right external iliac node. Given this, and that the node is shrinking, I would ask the surgeon why they think a PLND is needed vs a wait and watch approach and what they think the odds are that this is cancer related. Testicular cancer involvement of any external iliac in an isolated instance is a bit rare on it's own, regardless of the side, unless perhaps a person has had previous scrotal or groin surgery. I would be asking questions, but not be nervous or jumping into things.

        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.