RCC vs Oncocytoma

i waited four months between finding the mass and having surgery and it sucked.  I was on Xanax durin that time. I went out of town and got a second opinion at MD Anderson and it was worth waiting the four months after it was all said and done.

Have you considered a second opinion and a major cancer Hospital?  I'm not sure I would want to lose a kidney to an oncocytoma unless it was absolutely necessary.  Has any suggested a biopsy?  

How big is the mass?

Hang in there!

My merry-go-round ride started in December, 2013 when a routine physical uncovered microscopic blood in my urine.  Two CT scans (both semi-botched) and an ultrasound that didn't reveal anything later, my primary care physician referred me to a urologist at Stanford Hospital and Clinics.  He saw a 1.5cm lesion on my right kidney, but was not convinced it was malignant.  His suggestion was to wait and monitor.  He did offer the option to treat it if it was giving me problems psychologically.  But his preference was to wait and not unnecessarily reduce my kidney function if he didn't have to.  I asked if I was at any risk of it spreading if it happened to be malignant.  He tol me that cancers of this type are very slow growing and that the chances of spreading were negligible.  So we waited.....and waited.....and waited until April of this year when my annual ultrasound showed the lesion to be 2.0cm.  Not a huge increase, but enough of one that my doctor felt it was time to treat it.  He offered two modes of treatment.....a robotic assisted laparosopic partial nephrectomy or cryoablation.  He recommended the surgery because of my age (60) and overall good health, as the surgery has a much higher percentage of success (high 90's%) versus the neph.  I chose teh surgery mainly because of that and because, at that point, I felt it better to have the lesion completely removed instead of having the dead tissue remain in my body.  I have the surgery on June 22nd and am in the recovery process.  It turned out to be chromophobe renal cell carcinoma, a very non-agressive, but rare (only about 5% of RCC's are of this type) for of renal cell carcinoma.

Since I was diagnosed 29 months ago it seems my entire life has become waiting. I had blood in my urine (and we are talking bright red see the doctor now! type bleeding.) and went to the urologist who suspected a kidney stone (and he was right) but also wanted to do a CT.  Being curious i said yes.  we found a 22 cm mass in my kidney and enlarged renal glands.  then it was over a month of tests and biopsies and other tests trying to figure out exactly what i had as half the tests read inconclusive and the other half said maybe benign. (the PET scan was my favorite, anyone else have one where the tumor just didnt show up?)  The second biopsy finally showed RCC cells so I got to go to the hospital for a radical neprhectomy.  The doctor and I made the decision to leave the other adrenal gland in because it might not be cancerous (unfortunately it was) and and further treatment would be very difficult without any adrenal function.

Then surgery and waiting to see if the remaining tumor was going to grow, shrink, or stabilize.  It grew.  then the waiting as we dedide what to do and then wait to see if i can get into a clinical test.  Succeded and discovered that my waiting was just starting.  Turns out that Immuology does all sorts of weird things to tumors, especially if they are unmutated and simple.  2 years of waiting to see what the next CT will read and then on to standard TKI meds for a while.

Now I get the fun of waiting to see if the insurance company agrees to each selection my doctor makes and then waiting until we see if the med works and then if the side effects are survivable.  Its a regular roller coaster but i live on with the same 3cm tumor in my adrenal gland that was there when I started this sudden change of life and I am thankful every day for that. 

Anyway, its nice to be able to  blather every once in a while to people who may be listening but can at least understand.  Always willing to trade stories and see what other people have experienced.

Roo

Mine seems to have a method.  I just wish they would tell me and my doctors what it is...