Pathology report post nephrectomy

ktrett03
ktrett03 Member Posts: 6 Member
edited January 30 in Kidney Cancer #1

I’m 34 years old and was in a car wreck 1/4/24, where I was rear ended on a major highway. I followed up at the ER for neck and hip pain only to discover I had a complex cystic mass growing on lower pole of my left kidney via CT results. MRI 2 weeks later confirmed that it was over 8cm. I never had any symptoms whatsoever. Radical nephrectomy was 5 day ago and even though they are 95% certain it’s RCC, I’m still not mentally prepared to go over pathology report at my follow up appointment in 2 days. Any guidance would be appreciated as I navigate the recovery journey.

Comments

  • AliceB1950
    AliceB1950 Member Posts: 237 Member

    I'm sorry this has been such a shock to you. Most of us had our cancers found incidentally while getting scanned for something else. Please try to not be afraid to look at your patient portal for the pathology results, if available, before you see your surgeon again. I had my nephrectomy in 2018, and at that time, the results weren't released until I'd seen the doctor. Even taking notes and having my husband with me didn't make it any easier to remember what the doctor said, and I had no idea what questions to ask. Now when I see him after the follow-up scans, I look at the results as soon as I can, so I can jot down any questions about the radiologists notes. I find it easier to not be surprised at anything he might say.

  • eug91
    eug91 Member Posts: 471 Member

    Welcome ktrett-

    Sorry you had to join us like this, but I'm glad you did - we know what you're going through, so we know you're gonna do great. We're here for you.

    First off, congrats on getting through your neph. Hopefully you're walking and on the road to recovery.

    The mental part of this entire process is just as tough as the physical recovery. It's not easy, but you have reasons to be optimistic. You found the tumor and got it OUT of your body.

    No matter what happens with the pathology, your gameplan in the upcoming years should be the same - to take care of your health, to continue with follow up scans, and confirm it doesn't ever come back. Good luck with your follow-up appointment.

    You've got this - you're gonna do great!

  • Allochka
    Allochka Member Posts: 1,060 Member

    Great advise by Alice to look at results in advance, be mentally prepared and list down all questions!

    Quite possible that years down the road you will be grateful for the road accident, which lead to timely discovery of kidney cancer and saved your life!

    Good luck!

  • ktrett03
    ktrett03 Member Posts: 6 Member

    I appreciate the support! For those that had an open radical nephrectomy, how long did it take to regain abdominal strength? I’ve tried using the belly compression bands and splinting with a small pillow, but got into a coughing fit today. I struggled to have the strength for a productive cough, but then also felt it straining internally. It’s such a strange feeling as if I now have a big hole and my organs are shifting each time I move around. Getting in and out of the bed continues to be the most challenging and part of my day. I have a wonderful support system, but luckily none of my family or friends have had to go through this to be able to relate.

  • key2025
    key2025 Member Posts: 13 Member

    key question is stage. Did it spreads within the kidney or is it localized? Prognosis for stage 1-2 is very good. Being cystic the actual size of the tumor may be smaller than what MRI says.

    Minor question to ask is subtype. Cystic tumors have better % survival than solid tumors.

    i had a partial and it still took me a few months to recover. Not as young as you though. My urologist told me it would feel like someone hit with me a baseball bat. He was right. Even though I thought I would do better as I was on the younger end of the spectrum. Do your breathing exercises, get rest, and if it hurts stay on top of your pain meds and give yourself a break. I never understood the difference between being tired and being weak until after the surgery.

  • eug91
    eug91 Member Posts: 471 Member

    Everyone's healing process is different - just based on age, overall health, how the surgery went, etc.

    I don't remember when I started getting that abdominal strength back, but I do remember that my doctor told me that I could be back to normal exercise and lifting things at four weeks. HOWEVER it took my body longer to heal up - at four weeks I could barely do a light jog before feeling just exhausted. For me it took six weeks before I could run, eight weeks before I felt "better", and twelve weeks before I could do everything I could before. Though that was just me - I wasn't in great shape before and I was a little older than you.

    At the end of the day, try to be patient, don't push yourself too hard, and listen to your body.

  • AliceB1950
    AliceB1950 Member Posts: 237 Member

    My urologist told me that a lot of the pain comes from the surgical team having to shove your guts out of the way (and I guess clamp them so they don't slither), then shove them back when they're done. Everything gets bruised and it can take months for it all to stop hurting.

  • Deanie0916
    Deanie0916 Member Posts: 614 Member

    Hi, sorry you're in this spot, but so many of us have been through it so keep asking questions! You're really young to get this, so you might want to get a genetic workup done to see if there is some gene mutation. It's kind of a double edged sword, if you know it might mean more preventative scans that will catch potential problems earlier and inform your family but then you also have that knowledge of what might happen hanging over your head. All the best to you. ❤️ 🙏

  • ktrett03
    ktrett03 Member Posts: 6 Member

    Thank you for this recommendation. I was diagnosed with stage 3 clear cell, and am starting Keytruda next week. The oncologist agreed and wants to do genetic testing to see about VHL. Hoping that further scans and labs don’t show any mets as the margins were clear. Just sounds like my tumor was pretty aggressive, so very thankful for the car wreck and that it’s out of me.

    I’ve gone from being fearful for myself to now more worried that my sister or parents could have something too if it could be genetic.

  • key2025
    key2025 Member Posts: 13 Member

    Typically for tumor suppressors like VHL there is a debate whether to even report germline mutations (your case being different given the cancer diagnosis). Cancer needs both copies for a tumor suppressor to be inactivated (by deletion or mutation) and most times there is no statistical difference in penetrance between wild type and heterozygous.

    One notable difference though is in age of onset as if you're a germline carrier you now only need 1 copy to be inactivated as opposed to two.

    Long way of saying, even if you family has a germline mutant it will not greatly increase their chance of cancer. They may want to inform their doctor if they are tested and are carriers, and do an ultrasound periodically to detect any potential tumors early. I doubt insurance would authorize a CT and especially not a MRI even if they are germline (unless they have both copies mutated).

    Also, do expect your tumor to have a VHL mutation as most renal cancers do. The germline will be noted from the normal portion of your section. I am myself guilty of sloppy reading of my path reports.