confused newby - pT3a N ccRCC

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do_witz
do_witz Member Posts: 2 Member
edited August 2023 in Kidney Cancer #1

With no real symptoms or history of any kidney issues, my mass was found 6/3/23 in the ER. On 6/29 I had a radical open nephrectomy and was confirmed to have a 14cm pT3a N ccRCC. I consciencely stayed off google along the way (for the most part) because each step of the way things were only suspected and I knew it would be a dirty rabbit hole. I started my first infustion of Keytruda last week.

Now that I know exactly what I have, I have started to do a little more research. Honestly, I have been able to remain very grateful, positive and optomistic throughout but today I'm spinning. I really need to know if what I read is reality. It seems that at this point my 5 year survival average is 53% and if there is any re-occurance, it's more like 10%. I'm 55, i need to know if it's time to start living a little more recklessly. Are these statistics right?!?!

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  • eug91
    eug91 Member Posts: 471 Member
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    Welcome do_witz. Sorry you had to join us, but I'm glad you did. We know what you're going through and we know you're going to do great.

    First off, congrats on getting through your nephrectomy. Hopefully you're recovering well.

    Also, good job keeping off Dr. Google. The info you'll find there is often misleading/wrong. Those five year-survival stats are a little outdated. Firstly there's the constant rapid improvements in treatments - plus there're more and more younger people getting diagnosed (and younger people tend to live longer than older people). So your true survival rate numbers are likely higher.

    Basically: you have A LOT OF REASON to be OPTIMISTIC.

    Lastly, if you haven't already, consider joining the group at smartpatients.com. I know there're more people who've had success with Keytruda and can advise you on their experiences.

    You're going to do great - you've got this!

  • Deanie0916
    Deanie0916 Member Posts: 618 Member
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    Hello, welcome to the club no one really wanted to join in the first place. I agree with eug91, when you google, check the dates on the articles, there is so much info out there that is outdated and a lot of new promising info too. Take a deep breath and try not to drown in all of the research info and opinions. I agree smartpatients is a great group. Really digest the advice slowly and take on what is best for your life and situation...all the best to you, hang in there!

  • do_witz
    do_witz Member Posts: 2 Member
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    Thank you both for your reply. It's much appreciated. Most days I'm 100% in the solution but every so often I get sucked into a spiral for a couple hours. Guess that's normal ... I dunno.