RCC vs Oncocytoma

ClaudiaB

hi everyone! 

After 20 days (feels like 20 years) still unclear about everything.

 I already had two MRI , sonogram and Ct scan with and without contrast. On the last report says the differential diagnosis between RCC and Oncocytoma . I believe that I will need to have a nephrectory either way. Also says the my liver pancreas and renal glands are clear. There is no pathology lymphomatic and that my right kidney is perfect! 

I just wanted to know if any of you have gone through this long and agonizing process too? 

Like always, thank you for all your support and uplifting comments.

 

JerzyGrrl

Going through the process

Hi, ClaudiaB,

Welcome to the forum.  Sorry you have to be here, but (1) this is a great group of people, and (2) you're starting out with a whole lot of good news (in addition to the "might / could be this or that" info). 

It takes a while to get diagnosed, then all worked up medically (hopefully not quite so worked up emotionally), arrangements made with insurance and physicians and facilities, waiting, then pre-surgery stuff, waiting, surgery, and...

I'm at the waiting stage after (most of) the pre-surgery stuff.  Since I'm willing to be flexible, my surgery could be ANY time between two weeks from today (Should they have a patient cancel, which they say happens with 30% of their first-time-on-the-schedule patients) and September 6th (When I actually have my name on the roster).

The good news is, not being at the front of the line means you're not the Crisis du Jour.  The bad news is, not being at the front of the line means you have time to work yourself into a stressed state, talk yourself down and/or scrape yourself off the ceiling (I have a dedicated spatula for that), work yourself into a calm state, ask yourself why the living room drapes -- which you've always thought were so ugly -- are still allowed house-space, and ponder the meanings of other things in the universe and life.

It's a journey, this life thing.  Hang in there -- We're with you!

Jerzy

medic1971

hello

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!

 

foxhd

waiting

I was dx'd on a saturday ER visit. I had to be readmitted on sunday due to pain. Readical nephrectomy on tuesday. Nope. No waiting for me. On the other hand, you've been closely examined and tested. First, If you were in a critical situation, you would have had surgery already. Second, your doctors will be pretty clear on how to do your procedure due to ample prep time. Thats all good news. The bad part is waiting. Get used to it. Regular scanxiety comes next. Good luck with everything.

Bay Area Guy

2-1/2 Years

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.

k3364

I'm new to this

I'm 36. Just found a 1cm mass. MRI report says RCC,oncocytoma differential diagnoses, PCP sending me to an urologist. Anyone else been through this kind of diagnoses ?? PCP said to close to tell apart. Better be safe than sorry. Thanks in advance for any advice.

Kangaroorex

ACK! the waiting

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

Footstomper

Insurance Companies

Mine always refuse to pay for scans and treatment before backing down at the 11th hour. It just adds to the fun of having cancer.

Kangaroorex

Insurance processes

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