"Translocation" RCC

RandaLeigh
RandaLeigh Member Posts: 15
in Kidney Cancer #1

I received a phone call from my Drs office this week stating thet were performing more tests and stains on the mass they removed from my kidney. Originally I was told it was clear cell now they are saying it may be "translocation." type. This has me very worried based on what I've read about this type of cancer. Anyone ever dealt with this? 

Comments

  • NewDay
    NewDay Member Posts: 272
    #2
    INFORMATION ON TRANSLOCATION

    Hi RandaLeigh,

    i am sorry you need to be here but am glad you found us.  Translocation XP11.2 is a very rare form of RCC.  If you use the search function to look for "TRANSLOCATION", you can see some prior discussions.  I had 3 pathologies run on my tumor.  Two came back unclassified and one for Translocation.  There are two ways to test for this type and one is more sophisticated than the other.  The most reliable is a "FSH" study. This is extremely rare in adults.  Do you mind my asking your age?  Are you seeing an Oncologist that specializes in RCC?  The National Instute of Health (NIH) has experts in this type.  In fact, Dr. Lenahan there said they are the ones that discovered it.  When I asked him if this was worse than other types, he said "better than some, worse than others".  That was helpful. NOT. Their FSH study showed that I do not have it.  I can dig up some of the articles I found if you are interested, but everything I have, I found by googling.

    Kathy

  • ajens2528
    ajens2528 Member Posts: 11
    #3
    Me too

    Hi RandaLeigh! I'm sorry to hear of your diagnosis. I was diagnosed the same at 24. You can read my profile if you like. Mine was only stage 1a, what staging is yours? 

  • GiuseppeAr
    GiuseppeAr Member Posts: 1 *
    #4

    Hi, I have renal carcinoma with TFEB rearrangement.Discovered and operated in March 2015. Relapsed with metastasis in October 2023. My advice check yourself forever with abdomen MRI every 3 months.

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