10 years cancer free! and pushing for continued observation in Pittsburgh

Minnesota Girl
Minnesota Girl Member Posts: 119

I haven't been here in quite some time - a couple of years. It is great to see old faces and I offer good will for those of you who are new.

I was "accidentally" diagnosed with stage 1 RCC at 42 years old - it showed up on a CT for another issue. I had a hand-assisted radical nephrectomy and adrenalectomy on July 6, 2011. Although the tumor was just 1 mm from the renal vien, it was contained within the kidney. 2.3 cm, Fuhrman grade 3. NED!! Good news!

At my urologist's suggestion, I have always seen an oncologist for my follow-up care. My first oncologist said I would be considered "cured" at 15 years. We've moved a few times since then and my different oncologists have had different opinions. My most recent oncologist kept saying "you don't need to come anymore" and my response was "I HAD cancer and didn't know it. I will never be comfortable without some kind of observation. I never want to be in that position again." She ordered genetic counseling to help my peace of mind. It didn't offer any answers of why I got RCC, but I was cleared of all known genetic mutations. More good news!

I know long term recurrence of stage 1 RCC tapers off to a tiny, tiny little tail. But I also believe that as more people are diagnosed incidentally, at younger ages, we are going to learn more about this long tail.

I'm now looking to establish care in Pittsburgh. My primary care doctor recommended a urologist-gynecolist. She'll see me for other matters, but not the RCC. She referred me to a urologist, but he is not in my hospital network. How hard do I push? How are my fellow long time survivors being managed?

Thanks for listening - I appreciate any advice!

Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    edited June 2021 #2
    I'm just shy of 19 years out

    My follow up condusts of an ultrasound every 18  nunths as I still have a sub centemeter cyst n my other kidney. Also ci=overed by Medicare.

     

     

     

    icemantoo

  • lobbyist0724
    lobbyist0724 Member Posts: 489 Member
    Congratulations on the big

    Congratulations on the big milestone. I was diagnosed in 2016 and I was 42 as well, I still recalled that I was searching for all your old posts for advice at that time. Good to hear from you. Best!

  • eug91
    eug91 Member Posts: 382 Member
    edited June 2021 #4
    Congrats!

    No advice, but congrats on ten years! Here's to many many more! 

  • Minnesota Girl
    Minnesota Girl Member Posts: 119

    Congratulations on the big

    Congratulations on the big milestone. I was diagnosed in 2016 and I was 42 as well, I still recalled that I was searching for all your old posts for advice at that time. Good to hear from you. Best!

    Thanks

    If my journey helped you a little bit, I'm glad to know that. I hope you are doing well.

  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    eug91 said:

    Congrats!

    No advice, but congrats on ten years! Here's to many many more! 

    Thanks

    It's a pretty exciting milestone. :)

  • James0567
    James0567 Member Posts: 17 Member
    edited June 2021 #7
    Congrats!

    Congratulations for your 10-year NED. As you mentiond, this is a very significant milestone for you and I am sure you will have many many more such exciting milestones ahead.

  • Deanie0916
    Deanie0916 Member Posts: 523 Member
    edited June 2021 #8
    Congrats Minnesota girl!

    Great milestone!

  • Lynn_65
    Lynn_65 Member Posts: 26 Member
    edited June 2021 #9
    Congrats!

    Congratulations on 10 years and wishing you many more! ? You give me hope that I will one day celebrate 10 years too! 

  • Scottie22
    Scottie22 Member Posts: 95 Member
    edited June 2021 #10
    Congratulations

    Happy to hear your news. Wish you many more years of the same. In August I am due for my annual checkup and hoping for 8 years NED at that time.