Hi! I live in the US and my nickname is Pepe.
I was diagnosed with Stage 3 RCC in December of 2011 after having no symptoms other than being progressively tired for months. A CT scan ultimately revealed a 5.5 cm tumor in my right kidney and a 2.5 cm tumor in my lymph nodes between my aorta and vena cava, which officially put me at stage 3. Pathology revealed 3 different types of cancer (lucky me!) solid cell, papillary and sarcomatoid features. Nobody ever really got into numbers with me, but I am under the impression that people with this diagnosis don't live very long.
My margins tested clean for spreading at the time of surgery, and I thought "kick ass" I'm doing pretty well here. Due to the high risk of the cancer spreading, I entered a clinical trial of Everolimus on Feb 14 2012. Half of the study group, got the placebo. I am 99% certain that I got the actual drug based on my side effects. (Which have not been a big deal, by the way)
I elected to have it all removed on Jan 3rd 2012 and was back at work (at a ski area) two weeks later in shoes only. Five and a half weeks after surgery I was skiing black runs and a few weeks after that was skiing moguls and snowkiting with 20 foot high jumps. I figured I had a better shot than anyone in my statistical pool, being in excellent shape and being a former (pretty fast) cross country mountain bike racer. I was VERY happy with my recovery and quality of life. It all seemed too easy really, and I vowed to enjoy myself as long as I could in case the crap came back. I went on two kitesurfing vacations and kited like a freak. I still do every day it's windy at home. I approach my teaching job (I teach Spanish and Public Speaking) with a new vigor, and see it as my addition to the planet since my wife and I have no kids of our own.
About two weeks ago (June 21st) my CT scan showed 5 lesions in my lungs. The largest is .6 cm most are .3cm or smaller. As the radiologist looked back at my chest CT from February, the lesions were there, but looked smaller, suggesting growth and stage 4 metastatic disease. However, the apparent growth could (possibly) be explained by a different angle / quality in CT scans. That could be wishful thinking. Officially, the scan is inconclusive because nothing is larger than 1 cm and nothing can be biopsied at that size, but I am officially freaked out.
I have been told that if it were spreading to the lungs, and if I went without treatment, that I would likely survive 11-12 months. My type of cancer apparently does not respond to chemo. I'm trying to live as though I have no cancer until my next scan - and then some dammit! But it's tough to keep my shit together sometimes. I have an awesome wife, incredible friends and very understanding bosses at work. I am extraordinarily lucky to have such a support network.
If anyone knows of success stories of people with my type of disease, I would love to hear them!
[b]Well, it's been a year since surgery, and I'm still kicking. Skiing and kitesurfing as often as possible. I was on an Everolimus trial, and was pulled from that when the cancer spread to my lungs. Organic food may be slowing things down, who knows. I am on a Phase 2 Trail of ARQ 197 right now. We'll see how it goes. Can't complain with how I feel, just hoping to keep this crap down!