GG41,

It sounds like your GP is in over his head. Most masses that size tend to be RCC and even if they look like RCC. 10% of what looks like RCC may not be after a pathology is done. All of us on this board have had RCC. Mine was 14 1/2 years ago and other than the initial surgery eveything is fine. I assume a Urologist will send you for A CT to better define the mass. While 5.8 cm is not large it is too big not to be taken care of ASAP. We will get you thru this. We all felt like sh-- when we were told we probably have Kidney Cancer and they want to take out your Kidney. That to shall pass.

Icemantoo

My lesion was quite small when it was first noticed.....1.5cm.  Because of that, my urological oncologist recommended monitoring it since growths of that size are often not malignant.  It was 2-1/2 years later that I finally got it removed and in that 2-1/2 years, it had grown from 1.5cm to 1.7cm or so.  It wasn't until that section of the kidney was removed (I had a partial nephrectomy) that the lesion was confirmed to be RCC (chromophobe in my case).

With your size, it's likely that it's RCC and it can be recognized as such by a good radiologist with some degree of certainty, but not 100%.  It's likely that once you get a good raiologist, they'll refer you for a CT scan to better define the bugger and then discuss surgical options with you.

But, you need to do yourself a huge favor.  Don't search the internet.  When first diagnosed, we all ran to the internet to see what we could find out, and almost all of us ended up confused and terrified.  The problem with medical research on the internet is that a lot of the information is out of date and, even worse, a lot of the information is either contradictory or is written by someone that is trying to sell you some kind of magical cure.  I know it's hard not to look stuff up, but don't.  You'll only make things harder on yourself.

Everyone on this board either has or had RCC or knows someone that did.  RCC can be very successfully treate and we're all living proof of that.  Treatments for RCC have improved dramatically and, in fact, are still evolving even today (which is why the internet is pretty much useless in this instance).  The only thing you should look up is the name of a good urological oncologist in your area, preferably one associated with a large hospital, and most certainly one that has seen many, many cases of RCC.  Then get your primary care physician and your insurance company to get you a referral to that doctor and hospital.  I was fortunate in that my primary care physician got me a referral to the Stanford Hospital and Clinics and the urologist I was set up with was nothing short of fantastic.  He didn't do the surgery, but the doctor that did was equally fantastic.

So, that's what you should concentrate your internet searches on.

The people on this site are absolutely fantastic.  I'm a novice at this, but there are people (like iceman) who have tons of knowledge and insights that will help you get through this.

Hi, my kidney tumor was felt to be a cyst by ultrasound. It was found accidently at ER for Gallbladder attack. Told nothing to worry about looked like nothing. I was referred to a GI guy who ordered a MRI w/contrast, again only for my gallbladder. By accident I had an appointment with an urologist for PSA followup. When I got to that appointment he pulled me into his office and showed me the MRI, said the "normal cyst clearly showed as a Bosniak grade 4 mass on right kidney, but the top front so easy to get to.. So GP, ER, GI doc all said nothing to worry about just a cyst with no followup needed. Feb 2016 I had a duo Gallbladder and partial nephrectomy took 10% of my kidney. It took a week to get the path result back and it was an oncocytoma. The 6 weeks from being told to finding out the path results were very stressful thinking that I had two types of cancer. Like you, I read enough to scare the crap out of myself. I found this place and really found the quiet support and knowledge that only those who are going through this can give. Even though my story turned out well I have stayed around here because the positive energy that flows from the regulars is very special. Please update the group and know everybody is pulling for you.

'Keep cool, and away from children.'

GG41 said:

Thank you for your reply. I

Thank you for your reply. I appreciate it.  Is it the usual case that drs can't confirm rcc until after you have had your kidney taken out? I have done some reading about it but soem sites say it is readily identified by a radiologist and others say it can't be confirmed until after. I'm confused. The waiting is hard.  

Basically, anything that is 5+cm needs to be removed.  Most likely it is RCC; cysts typically do not get that big.  Cysts typically do not enhance on imaging.  But, you can not be sure until it is looked at under a microscope.  Even a biopsy does not tell much, because there are often false negatives:  it just missed the cancer cells.

Get your self to a urologic oncologist.  What I recommend is also getting a CT of the chest to make sure there are no metastisis; do that prior to the surgery.  You will have surgery, and you will miss at least a month of school.  It is probably not a good idea to wait to the summer, though that may be an option if it were smaller.  

You want to find someone who specialized in RCC.  

Sorry you find yourself here, but you're amongst the experienced now, so all will be well.  As others have said, get yourself to a urologic oncologist.  In the meantime, push for your MRI results, because by now it has been read.  If you can't get into a specialist soon, get your GP to order the CT with and without contrast so when you do go to the specialist they'll have everything they need....outside of some labs.  I would suggest a CT of chest, abdomen and pelvis, again with & without contrast.  Make sure you get copies of all your tests.  Best to be armed with all the info when you're seeing new docs.  Don't assume that you'll lose the kidney either.  Depending on the location of the beast within, and some other factors, they may be able to perform a partial nephrectomy.  Mine was a partial and done via robotics.  Several small holes and one a bit bigger to get that sucker out.  The first week post-op isn't much fun, but not as bad as you can imagine either.  Truthfully, I didn't experience much pain at all.  Discomfort yes, but I only took pain meds once after getting home.  And I was only in the hospital 2 days.  Others have relayed more pain than I experienced, so we're all different, but the worst of it for me was how weak I felt. 

We'll be here to help you with any questions along the way, hang in there.  In the meantime, I'll keep you in my prayers,

Donna~

GG41 said:

Thank you for your reply. I

Thank you for your reply. I appreciate it.  Is it the usual case that drs can't confirm rcc until after you have had your kidney taken out? I have done some reading about it but soem sites say it is readily identified by a radiologist and others say it can't be confirmed until after. I'm confused. The waiting is hard.  

The waiting is on a level with hearing the news in the first place, just spread over a longer period of time.  Kind of like being stuck in warm taffy, nibbled half to death by guppies, or pestered relentlessly by kindergarteners.

The good news (?) is, this typically doesn't grow like kudzu. Instead, it's slow.  So, while odds are really good that you CAN wait and it won't get worse, that means you can get lots of practice at working yourself up, talking yourself down, chilling, and repeating.  I have a three item you-can-get-through-this survival kit for the waiting times: (1) A spatula for scraping myself (and others) off of the ceiling; (2) A cat box scoop (only used in the kit, not in cat boxes) for dealing with any sh*t I may encounter; and (3) a sharpened #2 pencil for doing well on tests. 

Sorry you need to be here, but if you need to be here, this is a great place to be. 

Jerzy

This is probably way too down the road, but they kind of always think RCC because the odds are greater that it is.  But it isn't kidney cancer until that pathology comes in and says it is, no matter what it looks like or how big it may be. Mine was oncocytoma, and the odds of that were even tinier, since my father, aunt and grandfather all had RCC. So there is always that possibility and I hope it is true for you as well.  Best of luck, it is so very difficult to have that conversation and know you could have this awful disease, but this community is very supportive, I still stop in to see how people are doing just because they were so supportive. Good luck with your surgery.