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What are the odds?

monki36's picture
monki36
Posts: 9
Joined: Jun 2010

I had stage 1 grade 3 clear cell kidney cancer in May of 2013. Had a partial nephrectomy. All was good. I had a ultrasound in May of this year. They found a very small mass- 5x5x9 mm. The report came back possible Angiomylonoma. My urologist told me there was no way to tell that this was not cancerous, but it is way to small to biopsy. We are waiting 6 months, then performing a CT scan. 

My question is if you had cancer once, what are the odds that a tumor will show up in the other kidney and it is benign? 

Has anyone had a tumor show up and it was not cancerous? 

Thanks so much for your time!   Debbie

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

Debbie,

 

Since you joined our board in 2010 and an ultrasound showing this mass this year I  am going to assume your surgery was in May of 2010 and not May of this year. The size of the little bugger on your other Kidney is more consistant with a cyst than a tumor. Many persons including myslf have cysts on the other  Kidney and they usually watch and wait when they are this tiny. Probably nthing, but the CT in 6 months will show if it has grown or has the properties of a tumor. Hopefully the CT will show that it is nothing to worry abouut and even if it is something they will have caught it early enough to get rid of.

 

As for the odds of having a cancerous tumor in your other Kidney my Urologist says that the number is about 2 %.

 

 

Icemantoo

donna_lee's picture
donna_lee
Posts: 429
Joined: Feb 2009

there is always a possibility of the kidney cancer recurring.  Notice I did not same "coming back."  In all likely-hood, the cancer cells had already mets away from the original site, but had not developed into anything that was detectable on any US, CT, or other test.

After my first surgery, the docs said they got it all.... What was not said was that they removed surgically all visible or detectable sites that they saw on the original test results and excised wedges of the liver to determine if they were cysts or tumors.

I did have 2 recurrenses, each a year apart, each one in single lymph nodes, and each surgically removed. In my onpinion, they had been there at the time of the original surgery, but were so small, they were undetectable, even on the CT's  They were both found on regular check-up CT's and "caught" early.

Throughout all the tests over the past 7 years, I have been found to have a variety of cysts in both the pancreas and what's left of my liver; cysts in the remaining kidney; an hemangioma in the right lobe of the liver (which can look like a tumor); enlarged nodules in the thyroid; and a variety of other things I would never know I had if not for the cancer.

I'm not selling you short-or saying don't worry.  You have reason to be concerned.  But wait 6 months and then deal with what the Dr. finds.  There is no use wasting worry time on something that may not happen.

Good luck and hang tough.

Donna

todd121
Posts: 640
Joined: Dec 2012

I assume you have had other CT scans since your surgery (or at least 1 before your surgery)? And this wasn't there then? I'd look back and see if it was.

Probably a cyst. They are very common and people get more of them as they age. I have a small one in my other kidney.

I'm with iceman on the odds. I heard a number that was small, definitely like <3% for met to start in the second kidney for normal people (this is excluding people with the genetic condition that can increaset the odds greatly, which is rare). Kidney as the next site for a met to appear is way down the list. I remember lungs first, then bone, surgical site is in there somewhere, liver, lymph nodes. I don't remember the entire order. Anyways, it's rare. Hope that helps you feel better. You'll probably check it in a few months and it won't even show up on a CT scan (or it won't be mentioned on the report). I've had small things like this appear and disappear on my reports. When I asked my doctor, he said it's up to the radiologist to decide abnormal/normal and for small, normal looking things they might not even mention it.

Todd

 

monki36's picture
monki36
Posts: 9
Joined: Jun 2010

Oh my stars! I am sorry I did mean 2010 not 2013.

I did ask if this could be a cyst. The urologist said the ultrasound can tell if it is a solid tumors. They Are thinking it is a angiomyolipoma. They are not sure as the have the some of the same characteristics as kidney cancer.

I did have a ct scan last year, so I asked if the tumor was there then? The doc commented it was not the one he wanted for this case. I did not know want that meant. He said he was concerned but not worried. Haha I told him I was. He, told me it had to be removed to make sure it was not cancer.

Thank you for all your help. Debbie

todd121
Posts: 640
Joined: Dec 2012

Debbie,

So is he going to watch it or remove it? Or do a follow-up CT? I didn't think they could get enough resolution from an ultrasound to come up with this diagnosis? Especially on such a small mass. I would think a CT with contrast if possible followed by another in around 3 months might be the approach on a small mass like this?

What kind of doctor are you seeing? Is he a urologist or a urologic oncologist or a medical oncologist? You might want another opinion.

Please let us know.

Todd

monki36's picture
monki36
Posts: 9
Joined: Jun 2010

Todd,

    My doctor is a urologic oncologist, we are going to have a CT scan in November. He did talk about a biopsy, but again as you said it is such a little mass.

The big question is does CT scans show early stages of a cyst or mass? I know that sometimes CT scans can miss things? Given the fact that mine is very small. I just had a CT scan (at a local hospital) in March of this year For some stomach problems. It was done with and without contrast. There was no mass to be seen. So is this just that fast growing or did the ct machine miss it? All questions but no answers.   

Thank you for you help. Debbie

 

todd121
Posts: 640
Joined: Dec 2012

Something that small might have gotten missed or not been there. Probably impossible to tell.

As I recall, when they do a CT, there's something called a "slice" which specifies how fine-grained the data being collected should be. I'm not sure if that's an artifact of the machine or something that the doctor/radiologist defines when they do the scan (I'd suppose both are probably true, there may be a limitation of the machine and they may choose to do a larger slice depending on what they are looking for).

When the slice they use is near to the size of the thing they are looking at (or larger) it may get missed entirely.

I'm probably not explaining this very well....

Think of it this way. If you are looking through a peephole in a door to see if someone is walking by and you look once every 10 minutes, there's a good chance you'll miss them. But if you look every 5 seconds (and it takes them 10 seconds to walk through the hallway), you'll see them for sure.

For an excellent discussion of kidney masses have a read here: http://www.kidneycancerinstitute.com/what-is-kidney-mass.html

I think when it's this small it's hard to tell what it is. Seems you and your doctor are on top of it.

Best wishes to you. Hope it's nothing.

Todd 

P.S. Some small things this small on my CT reports have come and gone both in my kidneys and lungs. My doc explained to me that the radiologist interprets the images, and for small abnormalities that seem "normal" they may choose not to mention them. That's another possibility. I think your doc could ask the radiologist for a second read on your earlier CT to see if t was there or not, but I doubt he would because it probably wouldn't give any information that would change his course of action.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I think you explained it very well, Todd, even before your keyhole analogy.  Also, you've usefully highlighted how much arbitrariness and uncertainty exists at this level of magnitude, so that it's an art of judgment by the experienced practitioners and we all need to appreciate that fact.

monki36's picture
monki36
Posts: 9
Joined: Jun 2010

Thank you all for helping me understand. The maybe's and well could be's of this disease are very frustrating. I am the type of person who likes to deal with things and go on. Otherwise i have a tendency to over think the problem:) It sounds like I need more patience:)

If it is clear cell( which I hope it is not), would that jump up my stage or would it be considered a new stage 1 cancer since so small? 

Thanks for all your help! Debbie

todd121
Posts: 640
Joined: Dec 2012

I'm not sure they can tell if the second site is because of spreading from the first site or not, unless they saved some sample to do some kind of genetic analysis. Does anybody know? The size of the second tumor wouldn't matter. If it's spread from the first, it would be considered metastatic RCC, which is by definition Stage 4.

It's probably an angiomyolipoma like they said. Your odds of it being a met are very small, as iceman pointed out. Particularly since you had Stage 1. I would think your odds of a Stage 1 tumor have a met in the second kidney would be very small indeed. Much less than 1%.

Keep us up-to-date, but I'm sure you're fine. Nothing to worry about. You should worry more about driving to the grocery store and home safely.

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

and knowing you, Todd, I bet that you (and adman!!) spend an inordinate amount of time worrying about driving to the grocery store and home safely!     Wink

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Debbie..!  That mass is so small, it could be almost anything... wait and watch is the right thing to do at this time.  And some Docs say skip the biopsy, either remove it or not.  If it continues to grow then it is decision time.. if it does not grow, no need to do more than monitor.   I too have cysts in my remaining Kidney, they have not grown in almost 17 months and no concern to my Doc...

Hope this helps..

Ron

adman's picture
adman
Posts: 268
Joined: Jul 2012

....I now have a full-time driver due to my fear ;)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I might have guessed.   Laughing

monki36's picture
monki36
Posts: 9
Joined: Jun 2010

Thank you all! Yes, I am sure it is Just a little angiomylolipoma. Not worrying about that now. I have Shingles! Ugh what a horrible horrible disease. Thank you for your input:) 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Well, Debbie, you seem to have the luxury of choice over what you worry about!  I hope that the new small mass turns out to be nothing.  The watch and wait plan with CT some way away enables you to relax about that and deal with your present problem - the shingles.  What tough luck - as you say, that is horrible and some folks have a really hard time with it.  (Several of my closest relatives have had shingles on top of cancer during the past year and went through some very unpleasant patches.)

The one good thing is that, although shingles tends to recur (where have we heard about illness recurring?!) you will see this bout off and get back to your normal health again - light at the end of the tunnel.   I hope your shingles is at the less harsh end of the spectrum.  Maybe some members here can come up with tips on how to make it more bearable?

monki36's picture
monki36
Posts: 9
Joined: Jun 2010

It seems the doctors tell me it could have been a lot worse, As I went in early and got medicine. It is on my face, and has gone in my ear. It is getting better i can at least shower without screaming. Haha. I was on vacation no less when I was lucky enough to get them. They tell me I am young to have them. I turn 50 next month. ( hmmmm where have I heard that before)  All I have to say is that if anyone gets a rash go in!

i can not imagine dealing with cancer and shingles! That had to be horrible, those poor people! I feel for them! There should be a law somewhere that states you can only have one thing on your plate at once! Hope they are doing better! Debbie

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Unfortunately, Debbie, we buried two of them late last year. 

As the doctors said to you - it could have been a lot worse - but that doesn't actually make you feel better physically, does it? The consolation is that you know it will get better.  In the UK we're following the lead of the US in giving widespread vaccination opportunities now for shingles, particularly for vulnerable groups.  It seems like a very good idea.

monki36's picture
monki36
Posts: 9
Joined: Jun 2010

Oh, I am so sorry for your loss!

 

Yes the doctors are right About it could be worse, I believe you can lose your eyesight if it goes in your eyes. So I will take the ear and face. I think everyone should have the vaccine! Just remember to go go in with any blisters and rash!!! Debbie

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