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Stage 3a ccRCC - Keytruda or Surveillance?

Posted by ebdent88 @ebdent88, Jan 20, 2025

Hello. I am a 62 year-old male, fairly active (run 3-5 miles 2 or 3 times a week; also referee two adult league ice hockey games once a week) who ended up being diagnosed with kidney cancer in December of 2024. I would be considered overweight by 10-15 pounds, like many men my age. I hate using the word "obese", but I believe I fit that description by the letter of the law.

Surgery at the end of that month was a radical robotic complete nephrectomy. Despite my surgeon's optimism that the cancer was completely contained within the kidney, it ended up extending into the perinephric space (beyond the capsule) and into the renal sinus. My official diagnosis at this point is Stage 3a Clear Cell Renal Cell Carcinoma.

I couldn't get an appointment with the oncologist until February 10th, but everything I read (including National Cancer Center guidelines) tells me the options are either adjuvant therapy with Keytruda, or surveillance with scans and exams and bloodwork every 3-6 months.

Can anyone chime in with their thoughts, or experiences, with either type of follow-up treatment after kidney removal with Stage 3 diagnosis? Thanks very much.

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susanris | @susanris | Oct 19 7:35am

My 54 year old son had the same situation last year and had Keytruda for a year after his radical nephrectomy. He too had some dizziness and had fatigue but was fortunate to complete the series. We are awaiting his next scan results right now. He is glad he stayed with the Keytruda and God willing will get good results. I had kidney cancer in 1964 and the only treatment was nephrectomy, which I had.
I hope you can hang in with the Keytruda and do well!

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rivhanwinardi | @rivhanwinardi | Oct 19 9:18am
In reply to @schweck406kp "@quiltlady56 I was diagnosed in 2020 had radical nephrectomy told stage 1 6.8cm tumor. Then I..." + (show)
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@quiltlady56 I was diagnosed in 2020 had radical nephrectomy told stage 1 6.8cm tumor. Then I have been very sick this last year and was diagnosed stage 4 metastatic ccRCC with two tumors in my liver and one in remaining kidney with stage 4 CKD. That was in March. I just had liver surgery last month to take out the two tumors. Pathology report he did not get all the cancer and they won’t touch the one in my liver afraid I would have to go on dialysis. I still am not on the Keytruda and input they say they are going to start me on. I am now 66. I vomit severely often and have lost 55 pounds in 8 months because I just can eat. I don’t know why they haven’t started the meds yet and nothing in the surgery went as planned. Not sure where to turn at this point.
Praying and wishing good luck to everyone.

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@schweck406kp May I know what's the pathology report said about the tumor in the liver? Is it confirmed the metastatic of ccRCC? Seems you really need to start the Keytruda soon. Hope all the best for you.

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ronsale | @ronsale | 6 days ago

I opted out of nephrectomy when malignant lesion was found in one kidney in March 2023. Instead I had 19 infusions of Keytruda and five high dose radiation treatments. Three CT scans done from July last year until February this year show no sign of lesion and no spread of cancer.

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jaxfl | @jaxfl | 5 days ago

Typically completing two years of ICI gives the immune system a chance to train memory. Which is preferable to wack a mole. Which may no longer work if MRD develops resistance or evasion.

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Colleen Young, Connect Director | @colleenyoung | 4 days ago
In reply to @ram64 "Hearing other people’s stories helps makes me feel less alone. Three months ago I was diagnosed..." + (show)
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Hearing other people’s stories helps makes me feel less alone. Three months ago I was diagnosed with stage 3ta renal cell carcinoma. I am a 64 (I thought healthy) female. I came home one night and couldn’t urinate only a blood clot came through. When I went to the ER they thought it was probably a UTI but after a blood test and cat scan they discovered a 9 cm tumor on my left kidney. I kept passing blood clots that would block my catheter and were very painful. I ended up having a radical nephroctomy within a week. The surgeon recommended immunotherapy and when I met with the oncologist he laid out 3 options:
1.) wait and observe
2.) immunotherapy
3.) drug trial that was immunotherapy and another drug
I chose immunotherapy. The oncologist said it was grade 2 with little necrosis but because it had started to go out the renal vein I was at higher risk of reoccurrence.
I am doing immunotherapy every 6 weeks for a year. I’m only a month into it but I feel like I need to try to do anything that may prevent reoccurrence.
So far I’ve felt fatigue and some dizzy or light headiness but nothing severe. Good luck in your decisions. We are all in this battle together.

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@ram64, how are you doing on immunotherapy? Have you had your second treatment yet?

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frankwalter | @frankwalter | 2 days ago

I was diagnosed with esophageal cancer 2b and went through chemo and surgery then 9 months later discovered it metastasized to my frontal lobe of the brain. I had another surgery, clear margins, so 2 quick rounds of radiation then started on keytruda and I have been on it since doing treatments every 6 weeks instead of 3 after I hit the 2 years mark.
I have decided after 6 plus years of doing keytruda to stop, not because of side effects as they are really not there……yet. I do worry they may come that’s why I am stopping.
But 6 years is a long time, and I had a 5% chance or less of survival. Choose immunotherapy, if your body rejects it try other treatments like target or new treatments they are coming out with, stay strong and fight.

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