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RPLND after 2 years? Help please

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  • RPLND after 2 years? Help please

    Hi all,

    I am Anil. I was diagnosed with TC two years ago in May 2018 –with 60% teratoma, 25% EC, 10% Seminoma, and 5% Yolk sac / 10x7x5 size (I had hydrocele too). My pathology in Turkey did not state any lympho-vascular invasion. After Right OI, my tumor markers almost decreased to the normal limits expect for AFP, which was 1 or 2 units high than the maximum. Doctors did not see anything on scans but got suspicious about possible micro-metastases and I had 3xBEP after which my scans were clean and tumor markers normal. I then moved to the US (New England area) and exported my medical history and images. My tumor has been reexamined in the US and they noted that there was a lympho-vascular invasion. My tumor markers have been always negative since my chemo ended. But earlier this month I had a CT scan and they saw an approximately 1.2x1.1 cm lymph node along the course of the right gonadal vein. Even this is my 3 CT scan after chemo (1 in Turkey right after the chemo, and 2 in the US as part of follow-up) the report stated that this lymph node was not present in my first post-chemo scan in Turkey but visible in first follow-up Ct scan in the U.S. in 2019. More interestingly, this suspicious lymph node did not shrink or get bigger since last year.

    I am really exhausted to navigate this situation. I cannot get convincing answers from the hospital about why they didn't notify about something like this last year and why the node in question did not change size in one year or why my tumor markers have been going stable for some time. They now requested a chest CT that I will have next week to run further tests. They even started to talk about possible RPLND.

    Can someone recommend me an expert in Boston area? I want to have an expert opinion before I decide how to proceed!

    ​Thanks!

  • #2
    At his point I think the lymphovascular presence is not a factor. One would use it to try to determine risk of relapse for stage I disease (which I am assuming you had vs. a questionable stage IS disease, I am not sure what the actual readings of your AFP were). In stage I disease BEPx1 would be most likely sufficient so you have passed that point. For stage IS the BEPx3 is more used.

    A solitary metastasis along the gonadal vein would be a bit more of a rarer presentation and the fact that it has not changed, would to me, mean good news.

    However, if I were in Boston, I would go see Dr. Chris Sweeney at Dana-Farber as he is a top guy and a top expert.

    By the way, I just spent some time with Dr. Tinay Ilker from Instanbul in February. A lovely guy as well. Not sure where you were treated.

    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.

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    • #3
      Thanks Mike. I was not in Istanbul for my treatment unfortunately. I heard before that there are great doctors though. I will definitely try to get in touch with Dr. Sweeney. Thanks for the suggestion!

      My pre-surgery AFP was 560, and post-surgery were 164 and then 17.29. (0-13.4 ng/mL)
      Pre-surgery beta HCH was 109,69, and post-surgery 10,13 –and then less than 1.20
      Pre-surgery LDH was 317 - post surgery 220 and then 173.

      Although my CT looked clean around abdomen, because of AFP being above the limit, I was given BEPx3 for suspecting micro metastasis.

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      • #4
        Geçmiş olsun Ümit..

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