Just diagnosed with Renal Cell Carcinoma (RCC): Treatment options?

I can appreciate what you are going through. Having had kidney disease for years, I too was devastated when told I had kidney cancer, which was discovered incidentally to another problem. My only comment would be to see an appropriate Oncologist, and one at a teaching facility if possible, and hear what you are told with respect to options. My understanding is that kidney cancers are slow growing, so as scared as you may be, you need time to make an informed decision. I'm now 84, and still have the bad kidney, and was diagnosed a year and a half ago. Please, take your time, and have aa trusted person with you when you see the oncologist. Make a list of your questions so that you are an informed patient. I wish you good luck, a great Oncologist, and peace.

@mapleskoff thank you for your kind words.
I unfortunately have no one to help me with this diagnosis.its just me . I plan on writing every question down to bring with me when I see the Dr. Im in Virginia, a few hours from Virginia Tech university and close to major hospitals.
Im hoping this was caught early too. I had a UTI then a kidney stone and kept telling my Dr something still wasn't right and kept demanding a CT scan and ultrasound. She finally gave in and sent me for both tests and that's when it was found on Wednesday..
I hate when Drs don't believe patients when they say something is wrong . We know our bodies better then them.

I know the feeling having been diagnosed with a malignant lesion on left kidney March of 2023. Urologist said that the only option was total nephrectomy followed by other treatments. Because of my age - - 81 at the time - - I opted out after considering all things. I was referred to oncologist who put me on Keytruda 21 months ago with 19 infusions to date. Last CT scan a few months ago showed to spread of cancer, and the lesion was no longer visible. I have had side effects which I will not go into, but with my appointment this Monday I am considering stopping since a more serious side effect has come up. But for the past couple of years I have been able to live an ordinary everyday life taking part in normal activities including driving. I know this is a difficult and personal decision that only you can make after carefully researching with you medical team all of your options. I wish you well.

@maryellen26
I agree with your last two sentences. I consider myself lucky to have been connected with super Oncologists. I can only suggest that you forcefully request being referred to a top notch doctor. Failing that, and if your insurance, time, and funds allow, refer yourself to said doctor. It is your well being, after all. You sound like a very good advocate for your care. Hoping you get the result you want.

@ronsale thank you for your kind words as ❤️‍🩹
I am 61 and hoping to get answers so I can make the right decision.

A normal kidney weighs about 1/3 pound. Mine weighed just shy of 4 pounds! Years of meloxicam (prescribed by the VA) and Aleve damaged my remaining kidney and I’m at Stage 3b. Changed to a renal diet and had one keytruda infusion with severe debilitating side effects controlled (thus far) with hydroxychloroquine and a low dose of prednisone.
An upcoming blood test should tell the tale.
Get all the information you can, ask questions, and as my primary doctor said, Pray!

@maryellen26, I thought I'd check in. Have you learned more about your diagnosis and recommended treatment plan? How are you doing? What's next for you?

Hi Colleen

My primary Dr isn't calling me back still to go over my ultrasound results. I was able to make an appointment with a urologist for March 4th. I also found a new primary Dr thanks to my pulmonologist but I don't see her till April 27. All the Drs out here have a 3 month wait which is horrible. I also just found out that my Dec ,19 ct scan of my kidneys also showed a umbilical hernia.. and my primary Dr still hasn't called me to go over those results either. To say I'm furious is a understatement.
She is supposed to get me another referral to the cancer center that has RCC specialists and once I get that and the cancer center calls me to set up that appointment I plan on writing my primary Dr a very professional email telling her how disappointed I am that she can't find the time to go over both results and how unprofessional she is.
So right now I'm in limbo for both health issues lol.

So the cancer center called me and advised once I see the urologist ( who is a RCC specialist) and once my biopsy results come back then I will get an appointment to the cancer center. They advised they need all the blood work/biopsy results to be sent to them from the urologist then they will schedule me in.

My husband was diagnosed with non invasive renal cancer in Feb 2023. We also fought the GP for more tests, ended up at an urologist who did find the cancer. We were referred to UTSW urology clinic, did months of trial laser therapy that worked and then didn't. Did six weeks of chemo using Jelmyto, even going of a cruise with a tube in his back. Three month check up and cancer was still there, getting more invasive, then two months to wait for the kidney to be removed and the cancer now was diagnosed malignant, but margins were good. Can't help but wonder had the offending kidney been removed, if all that could have been avoided. It's hard to decide when such procedures seem promising. We now have appointments with an oncologist and urologist who are not 500 miles away and know to be vigilant in staying on top of it. We are blessed that appointments are within the next two weeks. Recovery from the kidney removal is going well and at 75, hubby gets stronger everyday.
Prayers and good friends and family have been a blessing.