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

Minnesota Girl's picture
Minnesota Girl
Posts: 119
Joined: Jul 2011

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!

icemantoo's picture
icemantoo
Posts: 3335
Joined: Jan 2010

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's picture
lobbyist0724
Posts: 454
Joined: Sep 2016

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!

Minnesota Girl's picture
Minnesota Girl
Posts: 119
Joined: Jul 2011

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

eug91's picture
eug91
Posts: 317
Joined: Jan 2019

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

Minnesota Girl's picture
Minnesota Girl
Posts: 119
Joined: Jul 2011

It's a pretty exciting milestone. :)

James0567
Posts: 17
Joined: Feb 2019

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
Posts: 403
Joined: Nov 2016

Great milestone!

Lynn_65's picture
Lynn_65
Posts: 17
Joined: Feb 2020

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

Scottie22's picture
Scottie22
Posts: 83
Joined: Apr 2013

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.

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