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CRashster's picture
Posts: 241
Joined: Mar 2017

When do you get to think we might be okay? When do we get to think we might have dodged this bullet? For 2 years, I've had clean scans, but always think that something is wrong. I'm just now feeling halfway normal, but very guarded. I had a dream that the cancer was back. We were looking at scans and the doctor kept saying that my scans were clear, but the cancer was back. And I know there are cases alot worse then mine. And that starts the whole survivor guilt thing when I finally feel like I might be ok. Turns out I'm a complex creature.

Hd67xlch's picture
Posts: 152
Joined: Apr 2016

I went 5 years thinking it was gone and then it came back, and I was stage 1. Ive read on smart patients people going over 10-15 years and it coming back. No survivor guilt here, Hell I dont even think of myself as a survivor, to me thats someone who survived a plane crash or something, not being sick. I live every day like its my last, and like you Im NED, hoping it stays that way but I wouldnt make that bet,JMO.

Steph85's picture
Posts: 166
Joined: Feb 2018

I feel like its "when" it comes back not "if"... Being younger then the norm, I just feel like it will come back and I will be ready.  I've educated myself on clear cell RCC and know what to look out for and what to expect. Its only been 3 1/2 months since my surgery. Maybe things will change! 



donna_lee's picture
Posts: 1018
Joined: Feb 2009

Today is May 9.  On this day in 2006 I got the news on tests I'd had with a regular check-up and was told I had 5-7 months to live, UNLESS, something could be done.  The plan of action was a coordinated surgery with 2 specialists- Urologic/Onc. surgical and Abdominal/Chief of Hepatic surgery.  Removed were the R Kidney, set of nodes posterior, Left lobe of liver, along with congenitally defective Bile duct and the Gall Bladder.  Incidental problems with the gall bladder/liver promted me to say something to my "new" PC at that appointment in April.

The surgeons thought they got "it all".  But the mets had already invaded 2 other nodes; one found in 2007 and the other in 2008; both with comparisons of 3 month CT's and the nodes were surgically removed.

What we have is a different kind of cancer, for which there is no blood test to say Yes or No regarding a recurrence. (Unlike, breast, prostate, lymph, or blood cancers and a few others)  We live a life of test-to-test with the shadow of a skinny little tree casting it's reminder upon our life. 

I encourage you to learn how to make plans you plan to keep, not dodging committments depending upon the next test.

This note is intended to be positive, not full of gllom and doom.  I still worry and get stressed when the next test is due, more because it takes a day out of my schedule, than because of the test, per se.

Hang in there.  Life can get better.

Hugs, donna_lee

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