New Concern

[Scared1234]

I had my dr appointment today. She really doesn’t think my ducts/liver are an issue. She is still concerned about my kidneys. I have had the cysts since a scan in 2013 and have had blood in my urine several times in that time frame. I had the CT scan a few weeks ago that show the cysts and one is 3 cm. The old CT didn’t have any measurements. I still have blood in my urine. I can’t believe they never told me about the cysts back in 2013. I can’t see blood in my urine so I didn’t know I was still having that issue. In the past, they’ve always said, kidney infection or UTI. I’ve had that happen twice in the past 7 years. Now I’m wondering it it ever was. I’m being sent to a urologist and I’m REALLY scared at what they will find. Kidney cancer? Cancer in the urethra area? Bladder cancer? My bladder wasn’t very visible during the CT scan. Anybody have any type of insight? I know she isn’t worried about the ducts/liver, but I do still have some uneasiness if that. Ugh!!

 

[SallyHart]

I am glad you got to see your doctor. Your doctor's suggestion that you see the Urologist is the Gold Standard where Kidney's are concerned. I went through all this so just to prepare you. He will more likely do a special Kidney scan which focuses purely on that area. He will see Kidney's. Urethra, bladder everything that is in that area, or as you had a CT already he may just look at that, or his may do a very small procedure where he looks inside the bladder....no biggy. Depending on what he sees/finds will depend on which procedure he will do next, if any. I had all the above plus he went in and looked inside my kidney area whilst I was asleep. He was very thorough and I accepted everything he offered. Try not to worry Kidney cysts are very common just like breast, ovaries, liver etc etc. Don't think it is bad, believe me you would have more symptoms if you had a cancer anywhere in that area. Hugs to you.

 

[Scared1234]

I am glad you got to see your doctor. Your doctor's suggestion that you see the Urologist is the Gold Standard where Kidney's are concerned. I went through all this so just to prepare you. He will more likely do a special Kidney scan which focuses purely on that area. He will see Kidney's. Urethra, bladder everything that is in that area, or as you had a CT already he may just look at that, or his may do a very small procedure where he looks inside the bladder....no biggy. Depending on what he sees/finds will depend on which procedure he will do next, if any. I had all the above plus he went in and looked inside my kidney area whilst I was asleep. He was very thorough and I accepted everything he offered. Try not to worry Kidney cysts are very common just like breast, ovaries, liver etc etc. Don't think it is bad, believe me you would have more symptoms if you had a cancer anywhere in that area. Hugs to you.

Thanks! Do you mind sharing what symptoms took you to the urologist in the first place and what the outcome was? Did he do testing at your first appointment or did it take several different appointments?

 

[matisworried]

hey, @Scared1234... i have had microscopic blood in my urine (hematuria) for over a decade. every single urine test i've had has shown it. like you, i was referred to a urologist and was sure i had cancer... maybe kidney failure. she ordered a CT scan which showed renal cysts. i got a cystoscopy as well. this is how we discovered the ACTUAL cause - superficial blood vessels in my urethra were "seeping" TINY amounts of blood. literally nothing to be concerned about. totally harmless and i spent several weeks freaked out about nothing.

i recently went through liver cancer diagnosis/treatment with a client of mine and learned a lot i didn't know about what radiologists look for and what the red flags are for them. cysts and tumors have very distinct differences when seen on scans. i really don't think you have anything to worry about!

did your doctor say she was concerned about your kidneys or are you making that assumption based on your referral to urology? as @SallyHart said, it really is gold standard to refer you.

 

[Scared1234]

hey, @Scared1234... i have had microscopic blood in my urine (hematuria) for over a decade. every single urine test i've had has shown it. like you, i was referred to a urologist and was sure i had cancer... maybe kidney failure. she ordered a CT scan which showed renal cysts. i got a cystoscopy as well. this is how we discovered the ACTUAL cause - superficial blood vessels in my urethra were "seeping" TINY amounts of blood. literally nothing to be concerned about. totally harmless and i spent several weeks freaked out about nothing.

i recently went through liver cancer diagnosis/treatment with a client of mine and learned a lot i didn't know about what radiologists look for and what the red flags are for them. cysts and tumors have very distinct differences when seen on scans. i really don't think you have anything to worry about!

did your doctor say she was concerned about your kidneys or are you making that assumption based on your referral to urology? as @SallyHart said, it really is gold standard to refer you.

She just said I needed to be referred so we could figure out why I have blood in my urine, because it’s not normal. That’s interesting about the vessels, because my scan said something about one of the vessels on my kidney. I need to go back and see what it said, again. What worries me is that I’ve had an off and on pain down low, to the left of my right hip bone. And the fact my bladder couldn’t be seen. I am under 40 though, so I know I’m on the young end of those types of cancer...

 

[matisworried]

She just said I needed to be referred so we could figure out why I have blood in my urine, because it’s not normal. That’s interesting about the vessels, because my scan said something about one of the vessels on my kidney. I need to go back and see what it said, again. What worries me is that I’ve had an off and on pain down low, to the left of my right hip bone. And the fact my bladder couldn’t be seen. I am under 40 though, so I know I’m on the young end of those types of cancer...

so she didn't say she was worried - that was just your assumption based on the referral. try and keep that in mind. people like us tend to editorialize our care. we take our own opinions and assumptions as fact when it's not.

the reality is you are being referred to urology not because she is concerned but because and it's standard practice to refer you to a specialist when you have had multiple abnormal labs. it doesn't mean anything serious is going on, it just means that they've exhausted their capabilities in diagnosing the issue and need a specialist to get to the bottom of it. gross hematuria (when blood is visible in the urine) is much more serious than microhematuria. the cause is likely minor and completely unrelated to the cysts that were found.

in the meantime, don't dwell on any of this. spending your days worrying endlessly won't change anything... it'll just make you miserable. try to fill your time with the things you enjoy doing - get out there and live.

 

[SallyHart]

Thanks! Do you mind sharing what symptoms took you to the urologist in the first place and what the outcome was? Did he do testing at your first appointment or did it take several different appointments?

No I don't mind at all. I had numerous UTI's and pain in the bladder region. No pain in Kidneys though. The first was an appointment with the urologist who got the history from me. He then referred me for the special Kidney scan. After that he said he wanted to take a closer look so he did the cystoscopy along with some special tests on the urine where they analyse it (not culture). After that he said there was some inflammation in the bladder and maybe something with the pipes that drain the Urine so he put me to sleep and took a good look at those and my kidney. So depending on his findings (or not) and how proactive you both are, will depend on what he chooses to do. My advice is to have it all looked at thoroughly, it doesn't matter how long (mine was 3 months from start to finish (testing) what matters is he is there to help you and find out what (if) anything is causing your problems. It is hard waiting for things to take place and get results but worth it in the end. My only issue that he could give me was a bit of bladder inflammation which he put down to all the UTI's.

 

[Scared1234]

No I don't mind at all. I had numerous UTI's and pain in the bladder region. No pain in Kidneys though. The first was an appointment with the urologist who got the history from me. He then referred me for the special Kidney scan. After that he said he wanted to take a closer look so he did the cystoscopy along with some special tests on the urine where they analyse it (not culture). After that he said there was some inflammation in the bladder and maybe something with the pipes that drain the Urine so he put me to sleep and took a good look at those and my kidney. So depending on his findings (or not) and how proactive you both are, will depend on what he chooses to do. My advice is to have it all looked at thoroughly, it doesn't matter how long (mine was 3 months from start to finish (testing) what matters is he is there to help you and find out what (if) anything is causing your problems. It is hard waiting for things to take place and get results but worth it in the end. My only issue that he could give me was a bit of bladder inflammation which he put down to all the UTI's.

Thanks for all this information. Did your pain ever extend over to the hip area? I have t really had a lot of UTI’s. I think because I always have blood in urine, they have just diagnosed me with UTI’s, when it probably wasn’t.

 

[Scared1234]

I guess what else is worrying me... I’m still having this lower abdominal pains and the hip pain. If there was any type of tumor, even in the hip, would the CT have shown that? I asked the dr about if the CT would show a tumor in the bile duct and she said “probably.” So that didn’t completely ease my fears, either. Ugh!!

 

[matisworried]

I guess what else is worrying me... I’m still having this lower abdominal pains and the hip pain. If there was any type of tumor, even in the hip, would the CT have shown that? I asked the dr about if the CT would show a tumor in the bile duct and she said “probably.” So that didn’t completely ease my fears, either. Ugh!!

generally speaking, cancer is painless until tumors grow to the point where they're pushing on other organs/nerves/etc. at that point, it's highly unlikely that it would be missed on a scan.

picking apart responses and focusing on stuff like your doctor saying "probably" is common for people like us. you're convinced something serious is going on and it's hard to get past it so everything that's said (or not said) only further confirms this.

the reality is that if there was anything to be concerned about, it would have likely been caught and addressed.

 

[Scared1234]

generally speaking, cancer is painless until tumors grow to the point where they're pushing on other organs/nerves/etc. at that point, it's highly unlikely that it would be missed on a scan.

picking apart responses and focusing on stuff like your doctor saying "probably" is common for people like us. you're convinced something serious is going on and it's hard to get past it so everything that's said (or not said) only further confirms this.

the reality is that if there was anything to be concerned about, it would have likely been caught and addressed.

I kept holding out hope that the CT would have caught anything cancerous. But then my dr said if I continued to have the lower abdominal pain, she’d order a pelvic ultrasound. I had thought a CT would show more than an ultrasound. So then I start to worry even more...

 

[SallyHart]

Hi there @Scared1234. I don't recall having hip pain, having said that your CT would see the hip area as it is part of the pelvis so if you had abdominal and pelvis scan it would have shown that area. As far as Ultrasound are concerned, they focus on a specific area of the body. Whenever a lady has a mammogram, if anything is seen, be it a cyst or whatever, the next step is ultrasound so my guess is the doc will order the ultrasound based on the area of the pain that you are having. So if you are having pain in the area of ovary for example, they will just focus on the ovary area rather than all of the abdomen/pelvis as does in the case of a CT. If you are already being referred to the Urologist you could explain the pain to him and ask him to refer any additional scanning/ultrasounds which will save you going back and forth and waiting for further referrals.

 

[Scared1234]

Hi there @Scared1234. I don't recall having hip pain, having said that your CT would see the hip area as it is part of the pelvis so if you had abdominal and pelvis scan it would have shown that area. As far as Ultrasound are concerned, they focus on a specific area of the body. Whenever a lady has a mammogram, if anything is seen, be it a cyst or whatever, the next step is ultrasound so my guess is the doc will order the ultrasound based on the area of the pain that you are having. So if you are having pain in the area of ovary for example, they will just focus on the ovary area rather than all of the abdomen/pelvis as does in the case of a CT. If you are already being referred to the Urologist you could explain the pain to him and ask him to refer any additional scanning/ultrasounds which will save you going back and forth and waiting for further referrals.

So would an ultrasound be more likely to show a tumor versus the CT?!

 

[bin_tenn]

So would an ultrasound be more likely to show a tumor versus the CT?!

I'd say your doctor is best qualified to answer a question like that.

 

[Ms.Honey]

So would an ultrasound be more likely to show a tumor versus the CT?!

For my side pain I had in this order:
X-ray, ultrasound, ct
All were clear.. I thought the ct would show more than the ultrasound?

 

[Scared1234]

For my side pain I had in this order:
X-ray, ultrasound, ct
All were clear.. I thought the ct would show more than the ultrasound?

That’s what I had originally thought. I’m hoping so.

 

[SallyHart]

So would an ultrasound be more likely to show a tumor versus the CT?!I wouldn't know about that as I don't understand the whys and wherefores of having Ultrasound after CT. Could you ask your GP?

 

[Scared1234]

I don’t really get much of an answer from my dr when I ask questions like that. I have had SO many people say that if I had a tumor large enough for symptoms then it would more than likely show on a CT. But I read that some cancers, like liver and bone (of which I’ve worried about) only show on an MRI.

 

[SallyHart]

I don’t really get much of an answer from my dr when I ask questions like that. I have had SO many people say that if I had a tumor large enough for symptoms then it would more than likely show on a CT. But I read that some cancers, like liver and bone (of which I’ve worried about) only show on an MRI.

Yes the CT 2 or 3D so they can look at everything. Even your bones are on there so I would say it is better. I think with Ultrasounds they usually focus on a particular area like I said before. I am so sorry this is worrying you so much. Can you hurry your appointments up with Urologist at all? Honeslt, I really feel it is the anxiety that is causing your troubles, obviously apart from cysts which are not a concern like your doc said. It could be the cyst that is causing the pain....hugs to you please keep us updated and try to push that appointment sooner so you can get some peace.

 

[Scared1234]

Yes the CT 2 or 3D so they can look at everything. Even your bones are on there so I would say it is better. I think with Ultrasounds they usually focus on a particular area like I said before. I am so sorry this is worrying you so much. Can you hurry your appointments up with Urologist at all? Honeslt, I really feel it is the anxiety that is causing your troubles, obviously apart from cysts which are not a concern like your doc said. It could be the cyst that is causing the pain....hugs to you please keep us updated and try to push that appointment sooner so you can get some peace.

Thanks! I’m really hoping and praying that if there had been any type of tumors/cancer it would have been visible on the CT. I can’t get my appointment any sooner. I took the first available!