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Two years since diagnosis....and currently NED

dhs1963's picture
Posts: 513
Joined: May 2012

It was the early hours of May 1, 2012 when I heard those dreaded words, "There is a mass on your kidney and you have to deal with it".  Once I looked at the stats, that did not scare me...I would take care of it and be ok.  At my six month scans, the identification of a mass on my lung...probably a met...scared be.  A lot.  Fortunately, it was a solitary met, and was surgically removed.

So here I am, two years since initial diagnosis, and NED. 


There are two things I would do differently today:

1) go to a surgeon who specializes in kidney cancer -- rather than a basic urologist, and

2) consulted a medical oncologist who specializes in RCC right away, particularly when the inital tumor turned out to be sarcomitoid. 


But I am here, writing at two years.  No Evidence of Disease!  (though I am 3.5 months since my last scans; next scans are next week). 

Djinnie's picture
Posts: 945
Joined: Apr 2013

I am glad to hear you are doing so well DHS, keep it up. I am with you on finding the correct specialists at the outset! I was thwarted at every avenue on that one, it wasn't until the cancer had spread that I was able to see any Oncologist. Very frustrating!



foxhd's picture
Posts: 3183
Joined: Oct 2011

I think you are right on, dhs. Like they say, "Hindsight is 20-20." We have all learned so much since our initial diagnosis. So many of us have had to learn things the hard way, and are lucky to be here now.  I am so impressed with the collective knowledge we have acquired and shared on this forum. I think about the heartache we have saved so many newbies from dealing with. I think we realize that many doctors including oncologists are not up to date in the advances in RCC. We need specialists. Not our local PCP, or urologist. The survival rates are substantially improved doing so. I wonder how many of us are still alive because of what we have learned here. Or to put it another way, I believe there are many RCC patients alive today because we have helped them understand this disease and its management. The shock of hearing that one has RCC is so personnal. We become so self focused being afraid of death. Where do we turn? Then physically and emotionally many of us have evolved into counselors. That is Karma to me. I am glad to know that we have assisted others into doing things differently because of our experience. I'm proud of the work we have all done together.

Posts: 69
Joined: Oct 2013

Good Morning!

Trust that your upcoming scans continue to be as good.  Maybe take in a baseball game to celebrate??  Thank you for sharing your good report.   ~Sharon 

Jojo61's picture
Posts: 1310
Joined: Oct 2013

We love NED!!!

And keep us posted on your next scan!




GSRon's picture
Posts: 1304
Joined: Jan 2013

NED is great... hope you stay that way forever..!!


icemantoo's picture
Posts: 3359
Joined: Jan 2010



Before you know it, you will be in double didgits.



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