cycstoscopy

Trinityo88

So they did my csytoscopy on the 8th.  Everything with my bladder looks good but there is still blood in my urine.  They thought I had a UTI and I don't know about ya'll but when I have  UTI I KNOW I have one before I ever go to the doctor.  I never felt like I had one.  After the antibiotics I went back and there is still blood in my urine so they told me to do another urine test.  I am doing that today, the doctor said if there is still blood in my urine they will give me another round of antibiotics.

Could it be kidney stones?  When they did my ct scan they said I have 3 kidney stones. 

Also, how long should it take to schedule the dang surgery?  They know for a fact they are doing the surgery and they told me on the 8th they would call me in a couple of days to schedule it but I have yet to get that call.  I am growing extremely frustrated that they havent scheduled it yet.  I mean the longer we wait to schedule it the further out the surgery will be.  It isnt like they arent scheduling other surgeries in the mean time.

Also, they are doing a robotic partial neph.  What is the usual heal time for that for me to return to work?

 

I am just frustrated and airing my frustrations on here I guess.

AnnissaP

Hi. As far as I know, kidney

Hi. As far as I know, kidney cancer can cause blood in urine. I think stones can as well, but don't know. I had a radical nephrectomy on Nov. 7th and I still get sore the odd time. Healing is different for everyone and the wait for surgery can be awful. As for returning to work....again it depends on the individual and the job you are going back to. I went back after 7 wks and it was too soon. I worked all of January and now I am off again. Please take all the time you need and do not rush in to things. I would call the doctor regarding a surgery date. That is just me though. No worries on the wait bc if it is cancer it is very slow growing. You shouldn't have any problems waiting a few weeks to 1 mth. My process from finding the tumor to having surgery took 3 mths.

Trinityo88

time

They found the tumor on January 2nd and my first appointment with the urologist was Jan 9th.  I have emailed the doctor and he basically told me to be patient. 

APny

Trinity, that's how I found

Trinity, that's how I found out I had kidney cancer. I had blood in my urine and the urologist ordered a CT scan, which showed the RCC. My surgeon said the tumor was close to teh collecting duct which is why I was bleeding. Most likely after the surgery there'll be no more blood in your urine. All the best to you!

Trinityo88

APny said:

Trinity, that's how I found

Trinity, that's how I found out I had kidney cancer. I had blood in my urine and the urologist ordered a CT scan, which showed the RCC. My surgeon said the tumor was close to teh collecting duct which is why I was bleeding. Most likely after the surgery there'll be no more blood in your urine. All the best to you!

is it

Is it normal to have blood in your urine if you have RCC?

I mean if that is the case then why does he keep prescribing me antibiotics?  My tumor is at the very bottom of my kidney and not near the collecting duct but I have had to pee in a cup more times than I can count since this started and each time they are concerned about the blood in the urine.  If they would just schedule the dang surgery and get it out then maybe that would clear up the blood in the urine issue..

ImNotDeadYet

Trinityo88 said:

is it

Is it normal to have blood in your urine if you have RCC?

I mean if that is the case then why does he keep prescribing me antibiotics?  My tumor is at the very bottom of my kidney and not near the collecting duct but I have had to pee in a cup more times than I can count since this started and each time they are concerned about the blood in the urine.  If they would just schedule the dang surgery and get it out then maybe that would clear up the blood in the urine issue..

It was for me

In fact, that was what brought me to the doctor originally. They ran some bloodwork and didn't see anything except some elevated blood cell counts. They thought it migh be kidney stones and said they'd repeat the tests in a week. On day six, the blood was back and I had trouble urinating. THAT got me to the ER, still thiking I had stones. After the CT, the saw the tumor on my left kidney and it was cutting into blood vessels, causing blood in urine and blood clots in my bladder. It was probably the most uncomfortable 24 hours in recent memory, but I had the surgery the next day. 

So, yes. It can be a sign of RCC as well as kidney stones. It all depends on how the tumor manifests and how big it is when they finally find it.

stub1969

Hi Trinity

Let me answer your kidney stone question----definitely, yes, kidney stones can and do cause blood in the urine.  People don't realize that the surface of kidney stones is rarely--if ever-- smooth.  In fact, they usually have a jagged surface and irregular shape.  When it passes through your body, it cuts in to the tissue causing bleeding.  I've passed numerous stones and collected my fair share--they look kind of creepy.

Timeline for surgery is dependent on many things.  If you are not satisfied with the care you are receiving I'd encourage you to make contact with another (reputable) facility and work through their Urology department to get the ball rolling.  In my case, I was diagnosed by my Nephrologist at my local hospital.  He forwarded my "request for appointment" to the local urology department with the directions they'd be calling in a couple days.  In the meantime I had contacted Mayo and set up an appointment with their Urology department.  I actually saw the surgeon and they set a date (two weeks later) for surgery all before the local hospital called me back.  My first appointment with them would have been weeks after my Mayo surgery.  

Hope this helps.  Good luck

Stub

Trinityo88

stub1969 said:

Hi Trinity

Let me answer your kidney stone question----definitely, yes, kidney stones can and do cause blood in the urine.  People don't realize that the surface of kidney stones is rarely--if ever-- smooth.  In fact, they usually have a jagged surface and irregular shape.  When it passes through your body, it cuts in to the tissue causing bleeding.  I've passed numerous stones and collected my fair share--they look kind of creepy.

Timeline for surgery is dependent on many things.  If you are not satisfied with the care you are receiving I'd encourage you to make contact with another (reputable) facility and work through their Urology department to get the ball rolling.  In my case, I was diagnosed by my Nephrologist at my local hospital.  He forwarded my "request for appointment" to the local urology department with the directions they'd be calling in a couple days.  In the meantime I had contacted Mayo and set up an appointment with their Urology department.  I actually saw the surgeon and they set a date (two weeks later) for surgery all before the local hospital called me back.  My first appointment with them would have been weeks after my Mayo surgery.  

Hope this helps.  Good luck

Stub

Kaiser

I have already gotten a second opinion but I am with Kaiser and it is very difficult for me to switch doctors since I can not go out of network.  I have to go to a Kaiser facility.

I did another urine test yesterday and emailed my doctor this morning suggesting the stones could be the casue of the blood.  I also requested they call me to schedule my surgery. 

Keeping my finger crossed that this works. 

APny

Trinityo88 said:

is it

Is it normal to have blood in your urine if you have RCC?

I mean if that is the case then why does he keep prescribing me antibiotics?  My tumor is at the very bottom of my kidney and not near the collecting duct but I have had to pee in a cup more times than I can count since this started and each time they are concerned about the blood in the urine.  If they would just schedule the dang surgery and get it out then maybe that would clear up the blood in the urine issue..

If it's a UTI there should be

If it's a UTI there should be bacteria in the urine. If the culture they did is positive then yes, it's a UTI. If it's negative then something else is causing it. Either the RCC or kidney stones. Both could cause blood in the urine.

todd121

Trinityo88 said:

Kaiser

I have already gotten a second opinion but I am with Kaiser and it is very difficult for me to switch doctors since I can not go out of network.  I have to go to a Kaiser facility.

I did another urine test yesterday and emailed my doctor this morning suggesting the stones could be the casue of the blood.  I also requested they call me to schedule my surgery. 

Keeping my finger crossed that this works. 

RCC and Blood In Urine

The way I found out I had RCC was blood in my urine. RCC definitely can cause blood in your urine. It's one of THE major symptoms.

What kind of doc is this?

You need a urologic oncologist at least. I mean you need a urologist absolutely at least, but urologic oncologist with experience in RCC is the best for you. He should've done a culture before he put you on antibiotics to see if you had a UTI. Once they start antibiotics, they can't do a culture because the antibiotics in your urine will keep anything from growing in the culture.

If at all possible, try and get to a specialist, preferably a urologic oncologist, but if you're not seeing a urologist, you absolutely should be.

Who is doing the surgery? Is it a urologist? Urologic oncologist?

I'd try and see a medical oncologist with RCC experience. I know with Kaiser it can be difficult. You might have to ask and then appeal. You have the right even to an outside consultation if you want one, if there is no specialist in this area. A consultation isn't incredibly expensive I don't think. It might even be worth paying for one. If they can use your existing imaging and tests, it might just be $2-300 for a consultation. If at any point you really want one, look into that option.

Best to you,

Todd

Deanie0916

Hi Trinity

Hope you get some clarity soon! Positive vibes coming your way.

Trinityo88

todd121 said:

RCC and Blood In Urine

The way I found out I had RCC was blood in my urine. RCC definitely can cause blood in your urine. It's one of THE major symptoms.

What kind of doc is this?

You need a urologic oncologist at least. I mean you need a urologist absolutely at least, but urologic oncologist with experience in RCC is the best for you. He should've done a culture before he put you on antibiotics to see if you had a UTI. Once they start antibiotics, they can't do a culture because the antibiotics in your urine will keep anything from growing in the culture.

If at all possible, try and get to a specialist, preferably a urologic oncologist, but if you're not seeing a urologist, you absolutely should be.

Who is doing the surgery? Is it a urologist? Urologic oncologist?

I'd try and see a medical oncologist with RCC experience. I know with Kaiser it can be difficult. You might have to ask and then appeal. You have the right even to an outside consultation if you want one, if there is no specialist in this area. A consultation isn't incredibly expensive I don't think. It might even be worth paying for one. If they can use your existing imaging and tests, it might just be $2-300 for a consultation. If at any point you really want one, look into that option.

Best to you,

Todd

doc & culture

They did a culture before they put me on the antibiotics.  The doctor is a Urologist. 

He does have experience in RCC but the isnt an oncologist.