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rcc or oncocytoma

GG41's picture
GG41
Posts: 9
Joined: Jan 2017

Hello all,

Around May of 2016, I began having some difficulties with my health and began exploring with my family dr a myriad of tests. At the time, I was being tested for endometrial cancer and that was negative but they found some irregularites with my blood not clotting properly. During this time, I have been feeling very fatigued and not so well. In September, I was back at the dr because I had started at school again(I'm a teacher) and was sweating uncontrollably all of the time. It got to be kind of funny with my 8 year old students and their teacher walking around with a towel all of the time. Anyway, long story short...more tests were ordered. One was an abdominal ultrasound. In the findings from the ultrasound, my right kindney was flagged for a dromedary bulge. My dr told me not to worry, I might just be made this way. In the meantime, I'm going through a bunch of other tests and each one scarier than the next and happily getting good results. I was thinking I was through the worst of it. My dr scheduled me for an ultrasound  3 months later. At the end of December 2016, I had this ultrasound. On January 3, I got a call that this was not a dromedary hump but a 5.8 cm solid mass suspected RCC or an oncocytoma.  My dr was floored and feeling very badly that we waited 3 months for another look. He explained all of the ultrasound report to me.

An MRI was scheduled for last Friday. I went to the MRI but have not yet received results. Is it correct that they often cannot tell the difference between oncocytoma and RCC?  I'm doing my best not to freak out over this because nothing has really been confirmed. I've got so many mixed emotions because I'm glad they finally found something, but I'm scared as hell that it is kidney cancer.  I have not been referred to a urologist yet. My dr said he would refer me after the results from the MRI come in. Does this sound pattern sound familiar to anyone? Any advice for me would be appreciated.  Thanks

icemantoo's picture
icemantoo
Posts: 3313
Joined: Jan 2010

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

Bay Area Guy's picture
Bay Area Guy
Posts: 492
Joined: Jun 2016

I agree with Ice.  Get a referral to a good, qualified urological oncologist.

I'm surprised that an MRI was ordered instead of a CT scan.  My doctor told me that CT's and ultrasounds are the tests of choice for investigating things like RCC and other types of malignancies and that MRI's are only used when someone cannot handle the contrast material used in CT scans.

GG41's picture
GG41
Posts: 9
Joined: Jan 2017

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.  

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

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.  

GG41's picture
GG41
Posts: 9
Joined: Jan 2017

Thanks for the information. Good advice about the chest CT.  I recently just went through pulmonary testing as one of my medical adventures. Thanks for the information. I appreciate it. 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

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

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Like others said, you need to see a urologist. I would see a urologic oncologist if you have the choice. They are the experts on masses.

The gold standard is not MRI, but a contrast and non-contrast CT scan.

I remember that they told me they were 90% sure it's RCC, but there's a 10% chance it was something more benign, but I don't remember the exact name of that more benign thing. Perhaps it's what you are talking about.

The urologic oncologist will know what he can tell from the scans.

A mass that big probably has to come out. Perhaps with a partial nephrectomy if you're lucky.

A three month delay is really not a big deal, btw. These tumors grow pretty slowly. Still, now you don't want to sit around and wait. I got in really quickly with my urologic oncologist once I had the contrast CT showing a 6.9cm mass. They worked me in almost immediately and surgery was scheduled within 2 weeks. You have to be aggressive when you make the appointments. Usually telling them probable/possible cancer will get you in quickly. They save some appointments for urgent things like this.

BTW, if it turns out to be RCC, you'll want a CT of chest/abdomen and pelvis after your surgery just to make sure you don't have any tumors anywhere else and also as a baseline for future scans post surgery. (They need something to compare it to to see if things changed/grew). Don't let them go with the CT scan of your abdomen and a chest xray, for example. Xrays don't pick up the small stuff. I advise people to follow up with an RCC oncologist asap after the surgery. There are sometimes studies you might be eligible for, but often these have time requirements like they must be started a certain number of weeks after the nephrectomy. The RCC oncologist will know about these types of studies. The urologic oncologist may not. It depends on how plugged in he is to RCC research.

Regards,

Todd

P.S. The terminology for these types of specialists is very confusing. A urologic oncologist, for example, is not really an oncologist. Let me put them here for your reference:

urologist - a surgeon who is trained to do urologic surgeries (kidneys, prostate, bladder, etc.)

urologist oncologist - a surgeon who is trained in various types of masses, but particularly kidney masses. Usually/often they have additional training in robotic and laparascopic (where instruments are inserted into your abdomen through small holes) and also other types of treatment for masses like cryoablation (freezing of cysts/tumors) etc.

oncologist - an internal medicine doctor who specializes in treating cancer and managing the treatment of cancer. these docs have first done a specialty in internal medicine, often also study hematology, and then study systemic cancer and using drugs/chemo to treat cancer and also interact with other specialists to treat cancer (like radiologic oncologists that use radiation to treat cancer)

GG41's picture
GG41
Posts: 9
Joined: Jan 2017

Bay Area Guy: I did also notice that in my reading. I'm not sure why it was a MRI. 

Bay Area Guy's picture
Bay Area Guy
Posts: 492
Joined: Jun 2016

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.

stub1969's picture
stub1969
Posts: 888
Joined: Jul 2016

I get a sense you have a long relationship with your GP.  If that is the case, I encourage you to visit with your doctor about giving you a referral to a larger hospital that have specialist in RCC.  As Ice said, it's seems your doctor is over his/her head on this.  5.8 isn't considered a "small" tumor anymore.  It's time to get this taken care of.  Mine was 5.3 cm at it's greatest dimension.  And, like you I was reaching and holding on to the hope that it wasn't cancer--but it was.  Since doing a biopsy is not common practice for RCC you're right the only way to tell if it is cancer is by removal and having pathology do their job.  

Again, welcome.  This site is full of incredible members.  We all have been through this journey and can provide information about our experiences.  Take care and try to relax.  Focus on the things you can control and try to be strong.  Lean on your faith and loved ones.  You'll get through this!  By the way--you'd be amazed at how many of us are current or former educators!

Blessings, Stub 

GG41's picture
GG41
Posts: 9
Joined: Jan 2017

Thank you for the welcome and all of your advice. I'm going to get onto the urologist information. I do have a long relationship with my GP. I think.he sometimes minimizes things to keep me positive. That's one of the reasons why I read. I guess I'm still a little more in denial than I thought. Thanks again to all who responded. 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

When you get your results back, then will be the time to look for a urologist and/or oncologist.

Stop 'researching' on google. You will find nothing useful there: the field is moving so quickly that the generality of pages cant keep up. O therwise they are often crazy.

You are at the 'crazy scarey' part of this disease(if you have it). Your imagination is not your friend. Wait for answers, then  you know what to do. Above all dont panic. I realize this is impossible, so just try to be calm and dont scare yourself.

Good luck

PS: You wouldnt believe how many people here are teachers (I'll let the others reveal themselves if they wish). I guess I should have followed the advice on the back of every book of matches.

Coldbiker's picture
Coldbiker
Posts: 23
Joined: Jan 2016

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.

 

GG41's picture
GG41
Posts: 9
Joined: Jan 2017

Thanks for your help everyone. I'm still just waiting on results and hoping for the best. I've stopped trying to use Dr. Google but there were some reputable sites that helped me to at least get some basic info. I have to say I have felt a lot calmer since posting, reading and receiving feedback here. Thanks for taking the time out to reply.  

One thing I'm still wondering about though...what's on the back of a book of matches footstomper? 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

'Keep cool, and away from children.'

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Makes more sense than "Close Cover before Striking." It's been a long while since I've had a book of matches....

GG41's picture
GG41
Posts: 9
Joined: Jan 2017

Haha that's funny. I've never heard that one.  I'll h have to remember that!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

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~

Vivaldi
Posts: 27
Joined: Jun 2013

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. 

APny's picture
APny
Posts: 1997
Joined: Mar 2014

I can only echo what everyone said. Definitely get a urologic oncologist. As for what it is, there's a 20 percent chance it's oncocytoma and 80 percent chance it's RCC. That's what my UO said prior to surgery. Once the pathology comes in they'll know for sure. I was hoping it would be oncocytoma but unfortunately it wasn't. In either case it has to come out, as said above. All the best to you and get someone who's a specialist as soon as possible.

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