Greetings @oldirish1..Certainly without a doubt the renal cell carcinoma that I had was scary at first...1 cm in my right kidney. It was removed in March 2008 so actually tomorrow is my 10-year anniversary. For me I've been cancer-free since I had it removed but I have to have the scans yearly now. Mine was encapsulated and had not spread so my situation was a little bit different than yours I hope that you can get the help that you need sounds very frustratin. I do know someone who told me that if you have these nodules on your skin and you have fibroids in your uterus then there's a name for this Condition it's a rare condition and it can lead to renal cell carcinoma to but of course that would only applied to a female. For me they never knew how I got the renal cell carcinoma because I was only about 48 years old and is kind of rare for someone that age to have that let alone someone who's a female. I just found out about this other condition about a month ago from someone who I met who has it and I do have uterine fibroid and I've had some noduals on my skin that were unexplained but my dermatologist was not suspicious of them so I do not believe that I was being affected by that condition but still never did know yet how I ended up with renal cell carcinoma just out-of-the-blue. It was actually found incidentally when I had an ultrasound done for gastric issues and then and a radiologist with a really good eye saw the spot in my kidney which he said looks like a tumor. For the first couple years I had to have scans every few months CAT scans with the contrast. Then I had to go for another 3 years with it every 6 months and then now it's every year