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

5 years 1 month ago - 5 years 1 month ago #56730 by iXanadu
Hi everyone,

I really thought I kept this more up to date. I'm very surprised that I didn't update the CT Scan or Cystoscopy visits, I did visit this site in my mind - but alas nothing is here.

1/9/19: CT Scan - came back normal with no visible abnormalities.

1/13/19: Urologist visit and Cystoscopy: After not passing blood for 7 days, I passed a clot in the urine specimen cup. The dr was pleased that I had independently done a urine culture and PSA screen. Based on the CT Scan and various Urine culture and dip test he was reasonably sure that the problem was going to be an inflamed prostate. He said there was no indication of bladder cancer in the test results. As a precaution - he wanted to perform a cystoscopy. And I got to watch. After the initial jolt of passing the scope through the muscle, I was presented with a finger like a thing growing on the side of my bladder. I was too shocked to ask for a picture - and have vague memories of the appearance. The sensation of the memory was that of seaweed attached to coral floating in the water. He said he suspected it to be 1-2 cm. There was a blood clot attached to the base. He promptly removed the scope and said "well there's the problem, that little growth is the source of the blood, we need to remove and send it to pathology to see what we are dealing with. My assistant will call you to set an appointment. On his way out the door, I got him slow down and answer a question about sexual relations to which the answer was the more the merrier, and that there was no risk of passing anything to my wife and he left. (I'm beginning to wonder if I need someone more talkative through this experience).

1/13 - 1/20: I am a positive person by nature - glass 3/4 full kind of guy. I set hard to attain goals, and work past adversity to achieve them. My intent was to treat this the same way. But because my dr was so unsharing with information, I needed self-research to know how to properly set goals and expectations - especially to calm my wife who emotionally is 180% opposite and dwells in the negative. I'm sure I visited most of the sites everyone here has, but this one video seemed to sum up everything I had read and helped me understand what might unfold over the weeks and months to come.
It is an interview or Dr. Soloway by Dr. Tony Talebi about the treatment of bladder cancer stages 1-3.

This video brought clarity to the cryptic words of my dr, and the vast information on the net. Because of this video, I prepared my wife for the moderate to high prospects of bladder cancer reoccurrence (like skin cancer), the possibility that they would inject chemotherapy or immunotherapy solution immediately after the tumor removal. I segmented the information so that I could focus on my business and continue to pursue my professional goals, without being blind to or ignore the health issues I was dealing with. I shared what I learned with my wife, and refocused on our 1-3-5 year financial goals - not fearfully - but realistically taking into consideration of how the might impact our lifestyle. These never included me not being here for 5+ years - everything I've learned is that this disease can have a reasonably dramatic impact on life - but is often not life threatening if handled appropriately.

1/21 After a reasonably fitful 4-5 hours sleep, I got up at 4:30, took a quick shower and headed to the hospital attired in sweats and comfortable clothes. After the 2-hour check-in process, my dr stopped in to greet me, and after just a few words, realized that I hadn't yet be started on an IV and was likely going to put his surgery schedule behind. There was no further opportunity to ask any questions. The next 15 minutes was a whirlwind. Four nurses huddled around me. Two were looking for a vein using a vein finder, one was asking a bunch of pre-op questions, and the forth was taking my clothes, asking about locking them up, all the while my wife is waiting in the waiting from for 1.5 hours wondering what in the hell is going on. I had facetimed her off and on, totally unaware that we were "behind schedule". The Dr's partner came in, asked a few questions, and did admit that they "may" inject "medicine" "if" the growth removed appeared to warrant the treatment. The anesthesiologist came by for 2 min - asked the usual questions. Soon the nurse said they were going to give me something to relax, but that I would not be put to sleep until I was back in the or. I don't recall much after that.

I awoke sometime later, maybe 1.5-2 hrs later in the stage one recovery area with a very attentive male nurse that was not more than willing to share what he knew. I learned that I was waiting for the "medicine" (and that it was usually done in the or, and "passed" in the recovery area). The dr's partner needed to do the injection into the catheter. Fifteen minutes later we got the call that the medicine was ready but the dr was about to start another procedure, that it would be about 45-60 minutes more before the injection. I asked if I was reasonably lucid to have conversations with clients, friends, and families and was told "yes, within reason". Apparently, I had been there longer than I realized. He was going to update my wife with the news, and I persuaded him to visit her and retrieve my phone and iPad so that we could talk, and so I could check on any incoming work concerns.

My Dr came by for 2 min - said he had briefed my wife on everything. The Dr partner came by and filled my bladder with "medicine" (I still don't know what the medicine was), and after waiting for the 45 min bladder bath, it was drained out over 10-15 minutes and I was sent to stage 1 recovery. I kept my wife informed through phone calls, facetime and messages.


Edit: My wife informed me she was told that two tumors were removed. On was the 2-3 cm finger like a tumor, and one was a flat tumor. He would not answer if they had invaded the bladder beyond the lining, that we would have to wait for the pathology results to say. They called what they injected me as "medicine" and she was too shocked to push for "what" that medicine was.


The stage one recovery area was pretty short. I had to pee really bad, so the nurse took me on a long walk to a restroom where I passed about 1/2-3/4 cup of urine - the one thing they need to see to let me go home. I was given a pill to reduce bladder spasms, but the dr declined to give me anything to aid in the rawness of the urethra - instructing the nurse to advise me to pee a lot. This might be the one thing I dislike the most about my dr. The drive home was uneventful, except for me realizing how bumpy my F150 is - I bet I felt every bump on the way home.

The rest of the day was one of going pee every 7-10 minutes, and being pretty vocal while doing so. The end of my penis was swollen, bruised, bloody and misshapen, and it burned from the base of to the end. Every time I urinated. I had a supply of opiates but that felt like overkill. I took Tylenol instead - but I don't think it helped much. I drank a lot of water, wanting to flush out as much medicine as possible. I didn't measure, but I suspect I produced 1/4-1/2 cup of urine every 1/2 hour, maybe more. Bedtime was challenging - we were both ready for bed early due to the lack of sleep. I was up about every hour on the hour peeing. I felt that an accomplishment - while awake, I didn't make it past 15 min.

2/1 The first day home of recovery was one of frequent trips to the bathroom, starting at 10-15 minutes. By the end of the day, I was up to an hour, sometimes more. The poor gland at the end of my penis was red, sore and angry. I found I couldn't tolerate any clothing on it. So I adapted some PJ's to allow me total freedom, much in the way you would an infant with a serious diaper rash. I avoided the opiates, but did medicate with a homeopathic pain reliever (one not unfamiliar with my age group) that took the edge off, and increased the tendency to sleep. I googled penis trauma associated with this procedure looking for pictures/information to let me know if the trauma was normal or did I end up with a careless surgeon. I couldn't find either. So either no one else has suffered the same symptoms, or it just isn't documented. I welcome input from others here that have gone before me. I fell asleep on the couch an hour before bedtime and woke to find the frequency of urination and pain reasonably diminished. I didn't know if this was the result of 12 hours of healing, of my homeopathic remedy or both.

Overnight, I woke every 1.5 hours, urinated with tolerable discomfort, and was able to fall back to sleep.

2/2 Today - I still don't like clothing touching my penis. The frequency of urination is about 1 hr. Pain (unaided with medication) is tolerable, that the swelling seems down. It is still red, bloody and raw looking. The thought of any kind of intimacy is painful. BUT I AM RECOVERING. I would like to go to work tomorrow - but it will depend on the sensitivity to being touched by clothing and frequency of urination. Fortunately, I own my own business and can work at home.

Take Aways and request for input:

Un-informative DR. This only bothers me a bit. I am happy to do my own research. If he is competent in his craft, and I can be informed otherwise, I'll get by. For instance, I would find it very helpful to know if I received chemotherapy (and which one) or immunotherapy. I would rather have a highly competent (I don't know one way or the other of his competency) dr, that has poor bedside manner, than the opposite. Your thoughts, please?

2/13 is my follow-up visit. This is where I'll learn the pathology results. I'm not overly stressed about the results - I can't change what they are now, but I am pretty apprehensive about a cystoscopy. If I know I'm going to get a cystoscopy, I'll likely take one of the opiates -and- my homeopathic remedies before seeing the dr, and have my wife along to ask questions and take notes. Can anyone share their experience with this follow-up visit?

This is all for now - please forgive how long it is. I took the time to add the detail for those that follow, and to capture my experience in one place so that I can reference it in the future.

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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5 years 2 months ago - 5 years 2 months ago #56576 by Alan
Xanadu,

Just a quick observation about tests and numbers. I am not up to speed on PSA numbers. Yes, they are important but, I always say take any with "a grain of salt" as the old saying goes. Same goes with any numbers a doctor reads. Taking myself. My heart rate has ALWAYS run 50-55 all of my adult life. "Regular" BPM according to cardiologists is 60-80 for males at my age. My cardio guy was so concerned he wanted me on a pacemaker without asking if I was always 50-55 and rarely 45-47 and a few times 60. I told him he could forget that idea....now watch me pass in the next 30 days...LOL at myself. I am not faint, not symptomatic in any other way. World class athletes (of which I am not however I am in pretty good shape for 67) will often run at 40 BPM. I have other slightly "off" numbers for other functions in my body all my life as MOST people do in something. They are just our numbers. The point I am trying to get too is: numbers are a guide but, don't get to wrapped up in them. There is no "perfect" body!

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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5 years 2 months ago #56575 by iXanadu
I hope this reply "stacks" properly. This is a response to everyone that has to take time out of their day to provide feedback and share their experiences. Thank You - one and all.

I've decided to "share" as much of this journey more for anyone that stumbles across this in the future with similar symptoms and test results. I'm still holding out for a positive outcome once all the tests and poking and prodding are complete. Maybe this will be comforting to someone later on.

My CT Scan is tomorrow. Yesterday my NP friend instructed me to get a PSA screen and a Urine "culture". Additionally, my Urine "analysis" results finally posted on my dashboard.

Urine Analysis - shows mostly negative results. The exception is higher than preferred proteins in the urine and of course the large amounts of blood. I've given up trying to google diagnosis this, but if I didn't, I would add kidney function to my list of concerns.

PSA:
+ PSA, %FREE 25
+ PSA,Free (.1 ng/mL)
+ PSA, Total (.4 ng/ml).

My NP friend tells me that this is "elevated' and to bring the results to my urologist appt on 1/21.

Urine culture is not back yet.

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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5 years 2 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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5 years 2 months ago - 5 years 2 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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5 years 2 months ago - 5 years 2 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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