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Not Diagnosed but have questionsf

JuliaGrant
Posts: 14
Joined: Oct 2016

I am a 52 year old woman, very active, very healthy. First had blood in my urine 2 years ago (August 2014) - went to doctor and they gave me antibiotics. April 2015 had blood in urine but only saw it one time. August 2015 started peeing blood clots one night - gone by next morning. Saw urologist 2 days later, he put me on antibiotic for 2 weeks. Went back and still had blood in urine, put on antibiotics for 30 days. Went back still had blood, did cystoscope and said bladder was fine. Did a urine cytology and still had blood. He wanted me to come back in January for another cytology. I asked if blood was still there if he was going to do anything different and he said no. He said some people just have blood in their urine. I have not been back to see him. Went for my two year exam with gynocologist (only have to go every 2 years because I've had hysterectomy) and he did a urine test per my request to check for blood. He said that I had a lot of blood in my urine. I gave him the history and he recommended sending me to a different urologist for a CT scan. He said if I had always had blood in my urine he would agree with the other uroligist but I haven't.

Now just waiting on that referral.

Sooo, i have noticed that I am a lot more tired lately, some back pain but I work full time and then come home and take care of my farm (cows, horses, chickens). Should I be worried? Does this ever turn out to be nothing?

thanks,

JuliaGrant

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

To answer your question

Does this ever turn out to be nothing? Yes

Even if it turns out to be something, like cancer, its not the end of the world, and its very treatable.

Good luck and let us know how you get on.

JuliaGrant
Posts: 14
Joined: Oct 2016

Let's hope and pray it turns out to be nothing. No offense, but I don't want to join your club for real!!! Prayers for all of you!!

 

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

I have to agree with Footstomper:  Terrible Doctor!!  My goodness.  Something is going on that needs to be addressed, clearly this isn't your normal considering the response from your gyne. 

Please let us know how this turns out, in the meantime I will keep you in my prayers.

Donna~

JuliaGrant
Posts: 14
Joined: Oct 2016

Thank you and I'll keep all of you in my prayers!!

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

but don't answer here. Are you sure that you've got blood in your urine from something other than the result of an over assertive love life?

In any case, get a different urologist. I might also think that with chronic uro bleeding, the cause might be found in a standard blood test.

JuliaGrant
Posts: 14
Joined: Oct 2016

Haha - supposed to be getting a referral to a different urology group - hopefully soon. I had a blood workup thru my employer early last year -- there were no red flags that I saw.

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

from an employee physical is basic CBC and probably metabolic function and drug testing. I would place no value on that test.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Oh Julie, sorry for all you are being put through.. and glad you are seeing another doc. I wonder if your primary coudn't order a CT or at least a ultrasound. Could your primary get this going stat?

And we have to stop treating MDs as Medical deity! I would've turned the tables on this doc and asked him, "What if YOU kept peeing blood?Would it just be some people have blood in their urine?" Geezlouize!! After all those months, you deserve better treatment!

So we're here for you all the way, if you want us to be. We'll help you get through this. I know, its hard not worry, but try really hard to focus on today  best you can.

Sending you hope and a hug!

Jan

JuliaGrant
Posts: 14
Joined: Oct 2016

Thank you for the kind words. Looks like I'm not going to be seeing the new group -- they can't get me in until mid-January or later and there's no way that I can come up with my whole deductible in the first part of the year. I've had my gyn send a referral back to old urologist to see if he'll schedule the scan. If they do find anything (and I'm praying they don't), then I'll go to one of the cancer centers around here.

magpie49
Posts: 5
Joined: Oct 2016

Julia, I hope its nothing but totally agree with all above.  New doctor, new tests and I would do it now.  Its been to long already.  Best wishes 

JuliaGrant
Posts: 14
Joined: Oct 2016

Thank you! I go between thinking that it's nothing and then thinking that it's been going on for 2 years and I've totally screwed myself...

Ree_Maryland's picture
Ree_Maryland
Posts: 158
Joined: May 2014

I had blood in my urnine for years, I could not see it but the urine test showed it was a small amount .than in 2014 had another urine test done .the blood count was high. sent for a MRI  turned out i had RCC ON RIGHT KIDNEY . had it removed  doing good .still small amounts of urnine that i can not see . but Dr said some people have it . don't remeber the name Dr gave it . Hope this made sense. 

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Hematuria (blood in urine)

JuliaGrant
Posts: 14
Joined: Oct 2016

Thanks

JuliaGrant
Posts: 14
Joined: Oct 2016

Your post gives me hope that I haven't totally managed to mess things up! Thank you!

 

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Definitely get that CT scan ASAP. Hopefully it's nothing but if it isn't then they caught it and can deal with it. Chronic bleeding is not good, no matter what the cause. You don't want to end up anemic on top of everything. Mine was caught because I peed blood and my urologist insisted on a CT scan along with the antibiotics for a suspected UTI. Thank god he did. Don't want to scare you, doesn't mean yours is RCC but it's good to rule it out with the CT.

JuliaGrant
Posts: 14
Joined: Oct 2016

Thank you! Don't know why the original urologist never mentioned anything about checking kidneys.... And then, even though my gyn recommended that I get the kidney ct scan, he said that "normally with this amount of blood, it's usually the bladder and not the kidneys". I'm confused and don't know what to think anymore.

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

For a CT of the abdomen & pelvis, with & without contrast.....sooner rather than later.  Your peace of mind is attached to these results, you now need to be your own best advocate.  Meaning start making your phone calls, possibly multiple times in a day, for STAT testing.  You may need to become a thorn in their side until you get what you want/need.   This should have been done a long time ago.

Best wishes.  I'll be praying you for.

Donna~

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Again, julie,  your Primary doc can order a CT for this bleeding. Have you consulted your Primary doc?

Jan

JuliaGrant
Posts: 14
Joined: Oct 2016

Good Morning! Got in to see the old urologist yesterday afternoon and he said that he doesn't like to send for CT scan because of the amount of radiation that it gives your body. I told him that I really wanted to make sure that I didn't have a mass or anything going on in my kidneys since this has been going on for a little over 2 years now. Sooo, he agreed to send me for one and I go tomorrow morning. It is a CT scan with contrast.

Jan - I don't have a primary doc because I rarely ever go to a doctor and the ones around here won't keep you if you don't come every year. Shoot, when I go in for a colonoscopy they truly can't believe that I don't take any meds on a regular basis.

Thanks everyone for the prayers, kind words, info and support!! Hopefully I should know something tomorrow....

JuliaGrant
Posts: 14
Joined: Oct 2016

Also, I forgot to add that he said that I had no infection - that he was seeing pure blood in the urine, no white blood cells. He did say that if the CT scan shows nothing then I'm just going to be one of those people who have blood in their urine. He said he would keep a check on it every 6 months to make sure the amount of blood was the same....

dhs1963's picture
dhs1963
Posts: 511
Joined: May 2012

If the CT does show a mass (not likely, but possible, as only 1-3% of the people with blood in urine turn out to have cancer), but if there is no other explanation, that raises the odds.  Do not let this doctor opperate on you if it turns out to be cancer.

 

 

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

Even the GP is able to refer you for an ultrasound.

A good Ultrasound device can pick up a sub-centimeter mass from the kidney and it is completely safe with no radiation concern. It can also distinguish the mass as a solid or cystic mass as well.

Best wishes!

Carmen

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Well good that you are getting a CT and glad you advocated for yourself.

BUT you need a primary doc. If you had one they would've ordered tests and referrals which MDs take more seriously when referral is from a doctor. It is an insurance rule you see a doc at least 1x  a year esp if you are going to get medications/refills. My primary has literally saved my life and is the one I trust 100%. Its a female D.O. thinks outside the box which in my case got me to the best speciaists for many other conditions that were being missed.

Let us know your progress. I always get a written copy of any tests/procedures I have done before I see the MD who ordered it.  If it is serious, you usually hear from the MD right away with a call (usually).

Keep us  informed.

We're here for you!

Jan

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

I was sent for an ultrasound for gallstones. Before I reached my front door, I had my doctor on the phone telling me they had found a shadow and could I go back for a CT scan NOW.

A good GP is a great thing to have, even if its someone to talk to if you dont like/undertstand a diagnosis.

mrou50
Posts: 389
Joined: Mar 2013

I agree with everyone here get a second opinion, I had the same issues doctors telling me it was nothing this went on for almost five years finally I found a doctor who wanted a scan by then it was to late the tumor had spread into another tumor and were to large to save my kidney.  As for could it be somthing else sure but better to get the scan and find out than wait to long and find out the hardway.  Good luck you are in my prayers.

Mark

JuliaGrant
Posts: 14
Joined: Oct 2016

Went for the CT Scan this  morning and carried the results back to the urologist. He looked at them and said that there might be a couple of small cysts on my left kidney and something on the tube from that kidney to the bladder but nothing that he thought we needed to worry about. He said he would let me know what the radiologist had to say when he received his report.

JuliaGrant
Posts: 14
Joined: Oct 2016

He did mention doing an ultrasound to make sure they were just cysts but then said he wanted to wait on the radiologists report...

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

That's very good news. CT is good at identifying the soft tissues and malignant mass, which you have none. Ultrasound does a better job at identifying the existence of fluid (cyst). Cyst is very common in adult over 40, so don't worry about it!

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I'd thought some scant blood in urine was sort of nothing and common. However, I'd also thought visible blood/clots was something potentially serious and should be checked out, particularly if you went from not having it to having it. When I had gross hematuria (visible blood) the first time, I saw a PA. By the time I saw him it had gone away and my urine test showed no blood. He shrugged. I didn't even know it was blood. I just knew my urine had turned bright red. Unfortunately, it happened after a night of heavy drinking (a rare event...it was my 50th birthday and I resorted to a one night return to my college days. Lol) so I let him chalk it up to the heavy drinking or the red velvet martini I'd had the night before.

A year later that gross hematuria returned and this time it lasted a couple of days and was eventually accompanied by kidney-stone like pain (blood clots passing through the urethra evidently). The first doc I saw thought I had a UTI and started me on antibiotics. She also did a culture and blood test. Later when those came back negative for UTI, she was very concerned and suggested I see a urologist. However, in the interim I went to the ER because of the intense pain. I thought I had another kidney stone. I'd almost convinced the ER doc that's what it was. I didn't want to be hospitalized or to be given pain drugs or get a CT, because all of that had been a waste of time when I had my kidney stone (and it cost a lot of money and none of it did any good). Thank God the ER doc did not listen to me and ordered a CT with contrast. They found this 7 cm mass...rest is a long story.

I've no idea all the reasons that can cause gross hematuria. However, I think your doc skipping a CT because of radiation makes him sound damn stupid when the downside risk is undetected kidney cancer. But I never went to medical school, so what do I know. Still, I'd get away from that urologist. He/she just doesn't sound like they are really looking closely into what's going on with you. At the very least you could have an ultrasound, which has no radiation.

I hope you don't have any problem with your kidney. Or it's something small/treatable. If there is a mass, I'd suggest finding a urologic oncologist to get further followup and not stick with this urologist. He seems to be in denial about the risks and symptoms of kidney cancer. You need a good specialist. Urologic oncologists have special training in masses and how to treat them. They often do robotic surgery or use other methods to treat this.

Let us know what happens please. Wishing you well!

Todd

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