RCC returns after being cancer free for 20 years (updated 8/21)

C91dancer,

THIS is why we should all DEMAND to be scanned, every year, for the rest of my life no matter what.  Not sure if you were having regular scans every year.  I know that the standards may have changed... Just terrible, but as it was said above, there are FAR more treatments for kidney cancer than there were 20 years ago.  Try to stay positive.

But this is proof positive that this highly unpredictable disease can come back many years later.  I had a small tumor removed back in October of last year.  I think that most of us are wondering what your initial situation was; how big was your original tumor, what type of surgery, prognosis, follow up treatment, etc... then everyone can better help you with their particular brand of expertise.

- Jay 

C1dancer said:

RCC Returns After 20 Years

I have been scanned and tested every six months for the past 20 years. I would not let them stop after my 5 - 10 - 15 etc benchmarks. I was told there are no blood markers for RCC ( yet they took 9 vials of blood each time), that I would get a secondary cancer before RCC would ever reappear, that I should stop worrying. I had been told that if even one cell was left in my body that it could reappear and attach to my brain, lung, liver... So I got a chest X-ray, liver ultrasound, brain scan each year, plus my remaining kidney was always tested for functionality. My original problem (1995) was stage 3 clear cell RCC, discovered a week after a total hysterectomy. Tumor was the size of a plum, encapsulated, hanging by a thread to a kidney that was completely cancered. Problem was solved by removing the whole right kidney, the tumor, all lymph nodes, a rib. No chemo or radiation necessary.

I am so sorry this happened to you. It's so hard to swallow that even with religiously getting scanned and tested this still came about. Wishing you the best and yes, long strides have been made in stage 4 treatment but it still sucks and is so unfair.

C1dancer said:

RCC Returns After 20 Years

I have been scanned and tested every six months for the past 20 years. I would not let them stop after my 5 - 10 - 15 etc benchmarks. I was told there are no blood markers for RCC ( yet they took 9 vials of blood each time), that I would get a secondary cancer before RCC would ever reappear, that I should stop worrying. I had been told that if even one cell was left in my body that it could reappear and attach to my brain, lung, liver... So I got a chest X-ray, liver ultrasound, brain scan each year, plus my remaining kidney was always tested for functionality. My original problem (1995) was stage 3 clear cell RCC, discovered a week after a total hysterectomy. Tumor was the size of a plum, encapsulated, hanging by a thread to a kidney that was completely cancered. Problem was solved by removing the whole right kidney, the tumor, all lymph nodes, a rib. No chemo or radiation necessary.

In your original post, you said that  the cancer metastasized in the right lung, liver, and left kidney.  Were there any signs leading up to this most recent discovery in scans from 6 months or a year ago, or did the signs just appear recently?  I am very sorry you have to deal with this.