Pathology-type of cancer still unknown:

Grateful_Dad
Grateful_Dad Member Posts: 3 Member
edited June 2022 in Kidney Cancer #1

Hello everyone. I was diagnosed with stage 4 kidney cancer at the age of 44, September of 2021. It’s now May 2022 and I had received immunotherapy to start/attempt to shrink my tumor (as large as the kidney itself. Immunotherapy sessions had serious adverse reactions. Last month, my right kidney was removed (I still have a tumor on my lung, metastasized from the kidney). Surgery and recovery has been great. Issue: I was 1st told I had clear cell carcinoma, later I was told it’s a mix of clear cell and papillary carcinoma. After my kidney and tumor were removed, they sent a sample to the Mayo Clinic in MN, as well as a Cleveland based clinic to determine what type of cancer it actually is. My oncologist believes the immunotherapy backfired due to the combination of drugs used. Aside from getting a body rash, I went through two weeks of a constant migraine like headache to the point of debilitating, excruciating pain in and all around my head (never had a migraine), but a neurologist said what I was describing was like a full blown migraine. After 2 weeks and many visits to the emergency room, I was given prednisone (steroid) that brushed the pain away within hours. Immuno drugs are out of my system now, no more headaches! Anyway, have any of you been told you have 2 different types of kidney cancer at once, only then to be told after having your kidney and primary tumor removed, that they cannot identify what type of cancer it is? It’s worrisome, but I maintain a positive attitude regardless and have through this ongoing process. I can’t find any feedback, and don’t see my oncologist for weeks to see what this new pathology report indicates. Thank you to anyone who has insight/knowledge on this. Forgive any grammar or spelling errors!

-Grateful Dad

Comments

  • AliceB1950
    AliceB1950 Member Posts: 244 Member
    #2

    It's possible to have more than one type. That's called unclassified renal cell carcinoma. Mine was a mix, plus it included some other features. But it was identified on the post-surgical pathology report, no question of what it was.

  • robdog
    robdog Member Posts: 1 Member
    #3

    I’m new too this forum.. I just wanted too let you know I’m 43 yrs old . And recently had a accidentally finding during a ct scan .. they found a 6x6 solid mass on my right kidney.and a 7cm cyst on my left kidney. I’m literally loosing my mind thinking of how the heck are they gonna go about this … and just the thought of the surgery is got my anxiety through the roof. What was it like from start to finish/recovery.

  • eug91
    eug91 Member Posts: 471 Member
    #4
    https://csn.cancer.org/discussion/comment/1697227#Comment_1697227

    Hi robdog.

    You'll probably get more response if you post in the main Kidney Cancer forum and not under Grateful_Dad's post.

    Sorry you had to join us like this. It's a shock to learn what you did, but you're here now. We've been through what you're going through, so we know you're going to do great.

    I really recommend reading through the posts - you'll see a lot of good advice and stories/experiences of what people went through. If you click through my profile, I have a link to my radical nephrectomy story. And if you have questions, ask them in the forum.

    We're here for you - you've got this!

  • thebigaristotle
    thebigaristotle Member Posts: 1 *
    #5

    I feel you @Grateful_Dad ,

    I had some of those issues myself. Renal Cancer and 42, cut it out. Metastasized to my lung at 43. That when the immunotherapy came in. my immune system was going bonkers, my pituitary glands and thyroid glands were off. Skin flaking off. But the prednisone worked, and was able to ween off. I've been NED for about 2 years now. I hope everything works out.

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #6

    Hi Grateful Dad, hope you get some clear answers soon. Please keep us updated we're here for you.

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