My story, for what it's worth: Direct to you Nephrectomy

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jarthur
New Member


Date Joined Oct 2017
Total Posts : 1
   Posted 10/27/2017 12:07 PM (GMT -6)   
In 2014 I was getting an ultrasound of my kidneys to check for cysts when the technician stopped, left the room, came back with the face of doom and told me she wanted to take a few more pictures, just in case ... I knew something was up, and I was right, this was an historical moment in my personal history - the day everything started to go to hell. The shadow she saw was a tumor, and in Jan. 2015, I underwent a partial nephrectomy of my right kidney. Seen in my left kidney at the time was another tumor, but it was only half the size of a little fingernail - so we went on a wait-and-see basis for a while. It went from fingernail to golf-ball size between CAT scans, at which point (April of this year) I was scheduled for a relatively new approach in kidney surgery involving slushy ice and a crack team of kidney wizards in Oakland ... but when they opened my kidney, instead of one golf-ball tumor, there were 12 tumors distributed from stem to stern, necessitating full nephrectomy of my left kidney and a silly waste of good slushy ice (AND they removed a rib to get to it - that's just plain WEIRD). I now live with a 3/4 kidney, which doesn't quite do the trick; I am surfing right above dialysis level (12-13% GFR; BUN 70 mg/dL; creatinine 4.55 mg/dL), in a constant state of nausea, mental confusion, general malaise and aches and pains. When I sink below 11%, I'll be on dialysis (at which point rumor says I'll experience the cleanest blood I've experienced since I was a kid - 100% pure Jonny blood). Meantime, I'm on SSDI, I can't drive or operate machinery other than Netflix, I'm an 63-year old invalid on an amazingly restrictive diet and a short leash. And there's not a thing I could have done to avoid it, and there's nothing I did that caused it, just the unkindly toss of the genetic dice, I came out the loser. And the adventure is not over yet ... I still have that 3/4 of a kidney remaining to possibly cook up more kidney cancer. I'm due for my 6-month CAT scan to check for "shadows", I hope there are none, but I do seem to be good at whipping up the Big KC ...

If nothing else, hopefully you'll be able to look at my story and say, "Well, at least I'm better off than that guy ..." If you are in worse shape, then please accept my heart-felt sympathies ... I'll be in worse shape soon, my doctors assure me. Thanks for listening.

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 300
   Posted 10/30/2017 7:19 PM (GMT -6)   
My goodness jarthur. You've been through a lot. I'm not sure what to say other than please accept my best hopes and wishes for your future.

Melody16
New Member


Date Joined Dec 2017
Total Posts : 3
   Posted 1/13/2018 7:08 AM (GMT -6)   
Thanks for sharing that Jarthur. I'm sorry to hear you've been through all that. I find your story interesting, as I am waiting to see a Urologist very soon, about a complex cyst discovered by chance, during an abdominal CT scan to do with my Crohn's Disease. Then I had an ultrasound done of it. Then a CT scan done of it. Now I have a referral to a Urologist. I don't quite know what to expect! I'm impatient to find out more. Will it just be monitored....or is it something that will require....goodness knows what! That 100% clean blood sounds pretty amazing, lol. You will feel young again, if you get that stuff!
Age 54
Crohn's Disease since 27 with chronic fatigue and diarrhea
Current meds: Imuran and Prednisone
Last Abdominal CT scan revealed a complex cyst on left Kidney

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 300
   Posted 1/13/2018 3:57 PM (GMT -6)   
Hi Melody. If what the found is suspicious, the next steps taken will depend on the size and location of the suspicious mass, as well as your feelings about what was found. I'll give you my experience.

In December, 2013, a routine physical uncovered microscopic traces of blood in my urine. My primary referred me for a CT scan, thinking they would find evidence of kidney stones to explain the blood. Surprise. They found what was then a 1.5cm lesion on my right kidney. After verifying it with an ultrasound and another CT, I was referred to a urologic oncologist at Stanford University. A wonderfully caring man, he explained that for lesions my size, the standard of care was monitoring, as a great many of these lesions turn out to not be cancerous at all. He did recognize, however, that some people can't stand the thought that they may have cancer and so told me that he could get it taken out if that was my desire, but that his recommendation was that he not reduce my kidney function without a good reason. In a fit of maturity, I decided to accept his recommendation. I had scans every six months, alternating between CT and ultrasound. Finally, in April, 2016, an ultrasound determined that the lesion had grown to 1.8cm, so he said it was time to take it out. I had a robotic assisted partial neph in June, 2016. My particular brand of kidney cancer was chromophobe renal cell carcinoma. It's rare, making up only 5% of all kidney cancers. However, the good news is that it rarely spreads, rarely recurs and is extremely slow growing. I've had two sets of scans (I was on a six month rescan regimen) that were clean, so the surgeon moved me to once a year scans.

So, in your case, depending on the size and location, you may go through the same treatment plan as me, or the docs may suggest immediate surgery. Again, there's no one size fits all treatments for kidney cancer. But just know that the advancements made over the past few years in treating kidney cancer are phenomenal. And advancements in scanning technologies mean that most kidney cancers are discovered accidentally, like mine. But they're also discovered when the lesions or tumors are much, much smaller and more easily taken care of.

Best wishes for you and if you need any more information, feel free to yell.
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