Started to research kidney transplant

klarsen316a
klarsen316a CSN Member Posts: 26 Member
in Kidney Cancer #1

Today I took a huge step in calling the hospitals that do kidney transplants that are within my insurance network. There were only 2.
My oncologist is not on board with me looking into a transplant. They aren’t sure yet (it’s been a year) if the nodules on my lung are cancerous. They are too small to biopsy without potentially collapsing my lung. There has been no change to the size or shape of the nodules in the year I’ve been on treatments. With having only my left kidney, I don’t see why I shouldn’t explore this option that my primary care doctor suggested. He thinks that the cancer is contained to the kidney only. But my oncologist is not in agreement.
My Tumor is currently at 73mm or 2.87 inches. Initially it was 11cm or 4.33 inches. So, treatments are working. But I’ve been taken off of the Lenvima as it almost killed me. They are now only doing immunotherapy as a treatment. If In 3 months, it hasn’t shrunk anymore or it grows, they will double up on immunotherapy. This also comes with risk of the immunotherapy attacking my good organs.
I’ve been told that the mass is too large for a partial nephrectomy.

Wish me luck on getting closer to getting this cancer out of me!

Comments

  • jazzgirl
    jazzgirl CSN Member Posts: 253 Member
    #2

    Hi again I just saw this more recent post. I wish you luck and more. It's very good that you are proactive with your questions and research, being your own advocate. That is a major part any more of getting the best health care. Take care ~

  • Deanie0916
    Deanie0916 CSN Member Posts: 638 Member
    #3

    HI I hope you're getting some relevant answers. I will follow with interest, I might have to look into this as well.

  • Skidmore204
    Skidmore204 CSN Member Posts: 16 Member
    #4

    Good luck to you! My goodness. I hope you have energy ! Did anyone tell you that certain RCC has a large % of returning as another cancer type? I’m thinking this may be why the oncologist doesn’t want to do a transplant? I hope you get stronger everyday. I need my kidney removed but I am not a good candidate for any surgery and have to live with this mass until it causes more issues. I really hope it doesn’t spread

  • jayrmartin3
    jayrmartin3 CSN Member Posts: 2 *
    #5

    hi sorry to hear you are going through this. I found out by accident that I had a 6cm mass in the upper pole of my left kidney. I was able to have it removed by a single port robotic nephrectomy on Thursday so I would get a second opinion on whoever told you that yours was too big to be partially removed. It also depends on the location though of the mass. If the whole thing is growing inside your kidney then that may be why they can’t partially remove it. I am luckily and my mass was half in and half out so they were able to scoop it out from the top and I only lost around 10% of the kidney function.

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