New - blood in urine - waiting for more diagnostics - love some guidence

2 years 4 months ago #56567 by iXanadu
Hi all,


Background:

On 1/1 I noticed a pinkish tinge of color in my urine after a long workday. I thought something might have been in the bowl - but logged it away for future reference. The next morning I was shocked when the bowl turned deep red/brown (like raspberry ice tea) color. I spent my 60 minutes "read & meditation" morning time googling blood in urine - and was further shocked at what I read. I rarely see a dr - but did have a login to the health portal. At 9:00 am, I filled a specimen bottle with my raspberry colored urine. The specimen came back clean of any infections but noted large amounts of visible blood. My doc said they needed to "scare me just a bit" to ensure I would follow-up with a CT Scan and Cystoscopy. I was sufficiently scared - the CT scan is scheduled for 1/9. The blood continued pretty heavy, on every elimination until 1/5. On 1/6, I eliminated a few small clots, then spotty pink bowls the remainder of the day, and since then, just cloudy urine. I typically eliminate cloudy urine in the morning, but it clears up by late afternoon when I'm sufficiently hydrated. I drink a minimum of 2 quarts of water a day, I push for 3, and sometimes drink 4. When I drink 2.5+ quarts of water a day, I pee mostly clear prior to this. Now, its reasonably cloudy (but not pink I don't think) 24/7.


Finding a well-rated Urologist that has an available appointment within the next couple weeks is proving very difficult. I have a 15 min urologist appt (I think it is with an assistant) for the 21st- but no cystoscopy

Questions:

Will I get any diagnosis from the CT scan - or will I have to wait weeks/months for a urologist to interpret the scan? The point of the question is that I don't be in limbo until the 21st.

Should I skip a local urologist (and their assistant) and schedule a urology appt with a urogist at a cancer center? VCU is a hour drive from me, and I think in network.

What else should I know - do?

1/1/2019 Happy New Year: What is that red tint in the toilet
1/2/2019 Primary DR - might be first signs of BC
1/9/2019 CT Scan, Urine Culture, PSA test - ALL CLEAR
1/13/2019 Cystoscopy show what looks like Papillary
2/1/2019 TURBT
2/5/2019 Clots and blood clog urethra go to ER
2/7/2019 DX: HG...

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2 years 4 months ago #56568 by sara.anne
Sorry to see you here....I think everyone who reads your report can sympathize...been there, done that.

To answer some of your questions. First, hematuria can have many causes and most of them are NOT bladder cancer. In many cases a cause is never found. However, it is one of the possible signs of bladder cancer so the tests you have scheduled are appropriate.

The CT scan will show whether there is a visible growth of any kind in the bladder. It will NOT tell if there is cancer and neither will the cystoscopy. An experienced urologist will have a pretty good idea after reviewing these, but cannot be sure until a biopsy is done. The CT scan and the cystoscopy exam will indicate whether a biopsy is indicated. A radiologist will interpret the CT scan and send the results to the physician who ordered the test. This usually doesn't take more than a day or so.

As to whether or not to try to get an appointment at VCU or not, this is your decision. A couple of weeks will not make any difference in your condition; IF it is cancer it no doubt has been there for quite a while and something just triggered the symptoms now. The worst part of waiting is the uncertainty and worry and that is not a minor point. IF it is bladder cancer, you will be having frequent visits to your urologist for observation and treatment, so you need to carefully consider the hour-long drive. But IF it is cancer you want to be treated by the very best urologist you can find...one who is experienced in treating bladder cancer. I live in a metropolitan area and although my urologist is "within the city limits" it still takes me up to 45 minutes to drive to his office. I do make my appointments so that they are not in rush hour!!!

Wherever you seek an appointment, you can also ask to be placed on the cancellation list ready to take an appointment whenever one opens up.

Wishing you all the best...and hoping that you don't join our exclusive club!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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2 years 4 months ago #56569 by iXanadu
Sara.Anne,

Thank you for your response. This response was one of the more useful things I've read since my saga began. Not too long before you responded - I spoke with a friend that is a Nurse Practitioner. Her response was similar to yours - don't get too far ahead of the tests - there are many things that are NOT bladder cancer . . . At her direction, I went to a DIY lab and got a urine culture and PSA test going. She felt a culture would provide more useful information about infections than a straight urinalysis, and since the prostate factors in so closely to these symptoms, knowing what might or might not be going on with it would be helpful. Hopefully, by the end of the week, I'll have the results from these labs and the CT scan scheduled for the 9th and can get a hint of what lies ahead. I'm trying to practice "mindfulness" - so that I'm present in what is present, and let this take whatever course it will take - but that is easier said than done.

1/1/2019 Happy New Year: What is that red tint in the toilet
1/2/2019 Primary DR - might be first signs of BC
1/9/2019 CT Scan, Urine Culture, PSA test - ALL CLEAR
1/13/2019 Cystoscopy show what looks like Papillary
2/1/2019 TURBT
2/5/2019 Clots and blood clog urethra go to ER
2/7/2019 DX: HG...

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2 years 4 months ago - 2 years 4 months ago #56570 by camry321
I had microscopic hematuria 2 years ago---and every test since then. I had ultrasounds and cytology. All good. A year ago I saw a urologist who found little wrong. I had CT with and without contrast. Found kidney stones and simple cysts. Had cystoscopy---bladder was fine. I was hoping someone could tell me if kidney stones staying in kidneys or simple cysts could cause blood in urine every test.

I got my results on tests quickly. We have an online chart so I could check results there. I do not know if they would do that if the results had found anything.

They told me to have retests in 2 years unless pain (there is none) or gross hematuria. I had pink blood twice in the last few months one time each, so I'm not sure what to do . I felt relieved after all the tests, but now not so sure. My advice to you is to do all the tests. If they find nothing, ask questions. I was told that sometimes they don't find a cause.

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2 years 4 months ago - 2 years 4 months ago #56572 by Alan
From what I understand, yes, cysts and kidney stones can easily cause bleeding . Microscopically and visibly. Also, sometimes a cause is never found. Just keep in touch with your doc as these questions should be asked and perhaps it is time for annual testing instead of every 2 years to be safe. Might be as simple as leaving those questions with his nurse and she can relay back as that usually elicits a faster response.

Your CT scan and cystoscopy are the "gold standard" in detecting bladder cancer so you are doing the important things.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 4 months ago #56574 by camry321
Good luck on your CT scan---hopefully it is with and without contrast. The dye may make you feel warm and get a racing heart briefly. Nobody told me that and I panicked but mild reactions are normal. Post any results you get.

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