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Stage 1 recurrence?

RandaLeigh's picture
RandaLeigh
Posts: 16
Joined: Mar 2014

Just was curious if anyone on this boat had ever been diagnosed with stage 1 RCC and ever had any recurrence. I know statistics say it's very unlikely but numbers don't always tell the truth. If anyone would like to share their story I would appreciate it.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

i think you likely know the answer.. of course it has happened..  There is no 100% with RCC.  There are people that had Mets soon after surgery, and some many years later.  This is why follow up in needed and not an option, forever.  So a stage 1 person is in the 90% range.. and there will be like 65,000 new RCC patients this year.. so even at 5%, well.. that is a lot of people that will get Mets at some time... booo...

Although the Stage 1 folks usually get follow ups less frequently, at 6 months or 1 year intervals.   Each clear scan hopefully brings a lot of relief...

Ron

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

I had a stage 1b grade 3 tumour removed last year, my first scan three months later was clear. I had second scan six months later showing three new tumours and three sizeable lymph. It's now just over a year and I have cancer in both lungs, my lymph and back in my kidney. There are no 100% guarantees irrespective of size, grade or location of tumour in the kidney. Cancer has it's own agenda, many people including myself are told you are cured after the op. Having had cancer before I knew that was a misnomer, remission is more fitting, which may or may not continue a lifetime. 

This is why it is so important to keep up with your scans. I had my first kidney cancer op in 2003, had yearly scans for the next five years, at which point I moved from the States back to Europe. I continued with ultrasounds every two years, unfortunately in 2013 it showed a new tumour on the original site, which was removed with clear margins, the rest is still to be determined.

Djinnie

 



dhs1963's picture
dhs1963
Posts: 511
Joined: May 2012

In 2012, I had a 5.5 cm (T1b) tumor removed with the Kidney.  The tumor, while stage 1, was grade 4 with sarcomitoid diferentiation. First cans were at six months (too long for Sarcomitoid), where they found a solitary 1.5 cm tumor on my lung.  That was removed, and was very similar to the primary tumor.  I have been NED ever since, but my oncologist points out that we know the primary tumor spread throughout the body.  It is reasonable to assume that I have living RCC somewhere.  So, we keep scanning.  If the tumors come back one at a time, we take them out....if they come back more agressively, they are gone.

One thing to remember is we were all stage 1 -- some of us did not know we had the cancer till stage 4.

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

But the majority are those with major negative prognostic features. So if your question is posed because you want to estimate your own risk within that 5% (roughly) recurrence group, then the answer lies in your histology.

/G

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