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Kidney Mass

Bcrawley
Posts: 10
Joined: Jul 2014

Hello, I am new to this group and this is my first post. I wanted to get some advice. I went to the VA for my anual exam and they saw blood in my urine. They sent me to get a sonogram and it came back with a mass in each of my kidneys. one was 9.4cm and the other was 10cm. They told me not to worry BUT if there was blood in the urine again either come as a walk in or go to the ER. My question is this, should I be worried and seek a civilian Dr's advice?

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

You will never regret gettin a second opinion.  Even if he says the same thing. :)

db8ne1's picture
db8ne1
Posts: 141
Joined: Feb 2013

I'm curious as to WHY they aren't concerned.  Do they think they are simple cysts?  I'm assuming that since YOU didn't see blood in your urine, how do you know if it will or will not continue?  The masses may certainly not be something problematic, but again, I'd find out why they think so. 

I agree with Cheatinlil: I'd get another opinion from a urologist that deals with Kidney masses.  Maybe even get a CT with contrast to get feedback on the characteristics of the masses.  (Again, they could be simple fluid filled cysts...).

Just my thoughts.

Good luck and keep us posted!

J

icemantoo's picture
icemantoo
Posts: 3196
Joined: Jan 2010

At 9 and 10 cm it appears you may have 2 large tumors. Not the diagnosis where a doctor would say he was not concerned. Or were they 9 and 10 mm? Double check and in either event get a second opinion ASAP.

 

Icemantoo

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

A large mass in each kidney needs proper diagnosis. If cancer is suspected i strongly recommend you contact NIH. They may want to treat you there. Please get it checked out. Ron

Bcrawley
Posts: 10
Joined: Jul 2014

They didn't say they thought it was cancer. But I will get a second and find out what's going on this friday.

Bcrawley
Posts: 10
Joined: Jul 2014

I just got off the phone with the Dr. They said it was CM not MM. There is no pain. I didn't see any blood. It was detected during a routine exam. Again, this is the VA and I was told to just monitor the situation. After reading the replies from everyone I think I will go get the results and take them to my civilian Dr on Friday. 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Can you double check the size? Because those are huge, and there's no way they would say not worry about it. Maybe you meant mm?

You don't mention your age. Cysts are common as we age. People over 50 generally have 1 or more, and the older you get the more likely you are to have it.

Was the blood visible? Or trace? Visible blood is a very bad sign that shoult NOT be ignored until the source of the problem is found. There are two other common causes of visible blood in the urine (kidney cancer is quite uncommon), and that's a UTI and kidney stones.

If you had visible blood in the urine, I wouldn't rest until they determined the root cause. Trace blood (only found on a urinalysis) can be caused by lots of factors, and some people even have that with nothing wrong.

Are you having pain? (UTI, stones, and kidney cancer can all be accompanied by pain).

I'm guessing you had small masses of 9-10mm, and that's quite common. Look at your blood test results as well and check your kidney function (creatinine, BUN, eGFR). If you have such small cysts, and no visible blood, watch and wait is what they would do.

A urologic oncologist (or just a urologist even) would be the person to see for a follow up if you want an expert opinion.

Todd

Bcrawley
Posts: 10
Joined: Jul 2014

Todd, I'm 48 and we're have kidney disease in my family. I am going to get the results from the VA tomorrow and make an appointment with mutt civilian Dr.  I have no pain and I wasn't able to see the blood in my urine. It was detected in a routine exam.

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

It's very rare. Find a urologic oncologist ASAP. This isn't something to be monitored the way the VA is suggesting. I would think they need to do a CT with/without contrast to get a good look at what type of mass it is. Ultrasound won't tell them enough information.

Sometimes they can tell from the CT what it is. Was blood work done? I'd think they'd want to check your kidney function.

Can you get them to refer you to a VA urologist?

Please let us know how your followup goes.

Todd

jacket69
Posts: 6
Joined: Jul 2014

I too am new to this site.  I had microscopic blood in my urine with no pain.  The Dr.  wasn't worried because the blood tests showed my kidney's were fine but he ordered a ct scan to just be sure.  I ended up with a huge tumor on my left kidney and three small mets in my lung.  I had the kidney removed and went to MD Anderson for a second opinion.  Stage IV with very little cancer.  Two months of SUTENT and the small mets are greatly reduced.  Go get a second opinion.  You won't regret it. Good Luck.

Bcrawley
Posts: 10
Joined: Jul 2014

I am going to get a second on Friday.

JoanneNH
Posts: 115
Joined: Sep 2013

Has to be mm and not cm.   10 cm is just about 4 inches.    That is the size of a baseball.    I know you are getting a second opinion, but I would try to get a copy of that report.   Go to medical records and see if they will give you a copy.

If it truly is 10 cm and they want to wait and see, that is gross malpractice.

 

What is a "mutt civilian Dr."?

Bcrawley
Posts: 10
Joined: Jul 2014

It should have been My Civilian Dr. word check on my cell phone. I asked him if it was mm of cm..he said cm. I am going to get the report tomorrow morning. Then I am going to take the report to my civilian Dr and get refered to a specialist from the civilian side.

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

RCC is typically asymotomaitc --- the mets might have symotoms but not the primary tumor.  Unless there is some medical reason why you are not a candidate for surgery, I would find someone who is willing to cut them out.   Howeveer, with large tumors on both kidneys, that can be problematic.

You need a good doctor now...really good.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

This is the most bizarre thing I've ever read here. Something isn't wrong. Everything is wrong.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

OK, sorry I need to update my last post... geeesh..  I suggest you contact NCI (not NIH).  The NCI, National Cancer Institute is the best place on the planet for someone with bi-lateral tumors.  There is no guarantee that they will take you, but it is my understanding that if they do, all the costs are covered, yes ALL.. They can do the Genetic testing and they KNOW how to treat bi-lateral cases.  They may need copies of your tests etc.  But worth a phone call..

Ron

NCI, Talk to Lindsay Middelton at (301) 402-7911

a_oaklee
Posts: 421
Joined: Nov 2013

Fox:  I thought exactly the same thing when I read this post.  I didn't respond initially because I thought "this can't be real"?  It troubled me.  But then I started thinking of all the news stories lately about bad care at VA's .......so now with a little guilt.....

BC:  I am very glad that you found this website.  When you go today to get your report ask for a CD of the test itself (digital copy).  We get one everytime we have a scan, as other doctors we see want to look at it themselves and not just read a report. 

With bilateral tumors you are indeed an unusual case and need to be seen by experts.  Ron is absolutely correct that you need to call NCI 

I hope for the very best for you.  Keep us posted. 

Annie

Bcrawley
Posts: 10
Joined: Jul 2014

Thank you Annie, I don't usually go to the VA hospital for anything major. But this was just my routine yearly exam. I have the correct results and a CD. I have an appointment with my civilian Dr tomorrow. I will get another view of what's going on.

Bcrawley
Posts: 10
Joined: Jul 2014

Ok, I went to get a copy of the results and a CD. The nurse that I spoke to on the phone had everything jacked up. He gave me bad information. he told me I had a cyst in each kidney. When I asked him about the size he said they were Cm and not mm. I asked him if he was sure he said yes.  Here is the results of the sonogram:

 

Sonographic  evaluation of the Kidneys was performed demonstrating no evidence of hydronephrosis or perinephric fluid collection. There is a simple cyst along the mid aspect of the left kidney measuring 1.9 x 1.8 x 1.5cm. A very small is noted toward the lower pole of the left kidney measuring 9 x 9 x 7mm. No complex renal cyst or contour-deforming renal mass can be seen. otherwise, the contour and echotexture the kidneys are within normal limits.

The right kidney measures 10.7cm longitudinal and left kidney 11.4cm. Neither ureter is visualized as dilated. 

 

I have an appointment tomorrow with my civilian Dr to get with a urologist to go over everything. I feel a lot better than I did last night but still a bit concerned.

 

 

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

you have a cist that is 1.9 cm and one that is 0.9 cm.  That is not as scary.  It could easily be a cyst, and not cancer.

Bcrawley
Posts: 10
Joined: Jul 2014

My Problem is the missinformation given to me over the phone by the nurse. When I asked him to double check the size he said it was CM not MM...I didn't get much sleep last night afraid of the results..lol..But I feel better now.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Bcrawley, that nurse should be ashamed.  Hopefully, you will get solid advice from a private doctor.  Good luck.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

That is great news, in spite of all the stress and worry.. most likely they ARE cysts..  Soon we can kick your back side out of here...  Just Kidding... you can stay and hound us as much as you like..  We do like it when someone escapes Cancer... it is rare that happens, but it does happen... you lucky ****...! time for you to celebrate..!

Sleep easy now...

Ron

Bcrawley
Posts: 10
Joined: Jul 2014

Thank you. 

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

:)

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