Chris Riley Chris' NIH Adventure

Back in the Spring of 2013, Chris was diagnosed with tumors on his left adrenal gland and right kidney.  During that winter, Chris underwent surgery to remove his left adrenal gland and the kidney tumor.  The adrenal gland tumor was found to be a pheochromocytoma (aka pheo) and the kidney tumor was found to be an oncocytoma.  Big words for stuff that basically is very rare.  Pheos and oncocytomas are very rare...doctors started to take notice.  

Fast forward to the winter of 2014.  Chris suffered a collapsed lung and was diagnosed with a spontaneous pneumothorax (aka a bleb or air blister on the lung).  He underwent surgery to remove the bleb on his lung...again more big words for a rare condition considering all his other ailments.    Now doctors really started taking notice!  His condition was presented at 'Tumor Conferences' throughout the County.  How is it this guy has so many rare conditions going on all at once??  Then begins all the genetic testing!  An enormous panel of genetic tests were run to the tune of $23,000!  There was a distinct possiblity that Chris had what's called Birt-Hogg-Dubay Syndrome.  A very rare genetic disorder that includes stuff like pheochromocytomas, oncocytomas, and pneumothoraxes.   Viola!  We have our answer, right?  Wrong.  The genetics all came up inconclusive for BHD syndrome and anything else that resembled his medical conditions.

So now what?  Thankfully Chris' Minnesota urologist was presenting his condition at the various 'tumor' conferences.  A certain someone finally took notice!  That certain someone was the very doctor who pioneered genetic study of kidney cancers...Dr. Marsten Linehan at the National Institute of Health (NIH).  Faster forward to October 2016.  The NIH wanted to take his case on; they accepted him into their kidney cancer research program!  We travelled to NIH to undergo extensive diagnositics and testing related to all his conditions.   He went through 3 days of absolutely exhausting testing and doctor visits. Even I was completely exhausted and I'm not even the patient!! That said - holy wow - The NIH is a force to be reckoned with! Indescribable the amount of knowledge and caring at this facility. Americans should all be very proud that their tax money and their Country have created such an incredible first class facility.

After all the testing, pokes and prods, we met with Dr. Linehan ( ( He is truly larger than life. He is THE ONE who discovered many genes related to kidney cancer in his 30+ year career. We were in awe speaking to him (he was a consultant for the TV show, 'House' hahahaha). To sum it up - it looks like Chris has what's called Chromophobe Renal Cell Carcinoma (…/ChromophobeRenalCellCarcinoma ( An extremely rare form of kidney cancer that is typically genetically driven. However in Chris' case - it is likely non-hereditary - which makes his case even more rare! It is thought that his current cancers may be related to the chemo/radiation treatment for his liver neuroblastoma cancer he had as an infant. Dr. Linehan said in his career of treating 30,000 kidney cancer patients, he has only seen 3 or 4 of this type of non-hereditary chromophobe. He may be able to develop a treatment protocol based on Chris' case for people who have had prior chemo/radiation and then years later see this type of kidney cancer profile. Way to go Chris!

And here we are today...Chris is starting his NIH Adventure.  During the week of This type of kidney cancer is only treatable via surgery. Here's where it gets even more interesting -- Chris' surgeon is the best IN THE WORLD at removing kidney tumors, Dr. Metwalli (…/adam-r-metwalli… ( We are hoping the surgery can be done robotically, since his previous open nephrectomy was horrendous. All of these details will be determined closer to his surgery date. Thank you all again for your tremendous support over the past few years, and as we go forward with getting Chris taken care of! 

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