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

9 months 1 week ago #56797 by iXanadu
2/8. I’m home! We timed the removal of the cbi cath around my morphine. I urinated within the first 30 min and there was zero pain,

The rest of the day was one of watching news and frequent urinations while waiting for the urologist rounds. I passed a few clots and had some pink bowls, but otherwise healthy urine.

The urologist that specializes in cancer visited me. The plan is another TURBT in 4 weeks to confirm the stage and rule out stage 2. Stage 1 treatment plan calls for multiple rounds of bcg, an induction round and maintenance rounds with frequent cystoscopies to catch reoccurrences early. Stage 2 is more radical - a course of chemo (i didn’t write down how long) followed by bladder and prostrate removal. I do t need further details on stage 2 - I’ll cross that bridge when and if I get there.

Only real downer was learning that there isn’t enough bcg to go around right now (2/2019). i hope the supply chain rights itself quickly.

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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9 months 1 week ago - 9 months 1 week ago #56790 by Alan
Wow! You have a wonderful attitude and as you know that is a BIG part of beating this. Your team from my perspective is doing everything they can to get you through this. A second TURB is usually done when a high grade tumor is found and the margins (muscle) isn't sufficient to rule out a deeper invasion. You will come through this stronger and more effective plus a better person after this is beaten....which you will! Wow!

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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9 months 1 week ago #56789 by iXanadu
Hey everyone,

This is a continuation of my journey that begin on January 1, 2019. after three full days of laying around recovering, I went to work the day after my last post (2/5). That morning I noticed an ache in my lower right back. It reminded me of the same ache I had on January 1 when this whole saga begins. At this point I was peeing very light pink to clear and felt that my healing is progressing well.

Midway through the day my frequency and urgency increased and around noon I filled the bowl with bright red urine. That continued for about an hour and a half so I called my urologist and spoke with the physicians assistant. I was told that the urgency, the frequency, and the color we’re all consistent with the recovery, and that I could pick up an over-the-counter medicine (AZO) that would help with the urgency and frequency.

Reassured, I worked another couple hours, rushing back-and-forth to the bathroom when on my last visit before deciding to go home I noticed that my output had reduced to a trickle. On the way home (a 20 minute drive) about halfway there, I had a sudden urge and decided to just wet myself and clean up when I got home. And so it felt like I Peed and Peed and Peed. When I got home I rushed into the bathroom only to find that my underwear was dry save a few drops of blood. The next two hours were agony as I tried unsuccessfully to void. At My wife’s suggestion I got in a warm bath but that didn’t help either. Afterr waiting an hour for the emergency standby doctor to give me a call, I was instructed to go to the ER where I remain still.

What I’ve learned is that my bladder had likely shed a scab or produced enough blood to clot my urethra. At the ER I received a catheter where they drained over 1000 mL of urine. I cannot tell you the relief I had once my bladder begin to empty. My urologist instructed the hospital to admit me and keep on a constant bladder irrigation to help heal the surgery wounds and to ensure that I did not clot again. I went in on a Tuesday evening about 10:00 o’clock, and it’s now Thursday at 11 o’clock where I’m recovering nicely. Tomorrow the foley will be removed and once my bladder wakes up and demonstrates that I can void I’ll be able to go home.

While here, I met another physician in the urology group that told me that my pathology results were in.

High-grade papillary urothelial carcinoma, superficially invasive.
Muscular areas propria not present.
Tumor staging: pT1.

The pathology department remarked that there was not sufficient muscle to test. The urologist explained that there’s a fine line between risking a perforation and collecting enough tissue and that it was a judgment call. They would often error on going back for a subsequent trip rather than risking opening up the bladder in the event that it’s full of cancer cells.

I will be assigned to a new urologist in the group, one that specializes in the oncology side of things that will be my partner for the next several years depending upon the length of the treatment plan.

I am already greatly encouraged at a level of communication that I receive every day from their visits. I know that I’ll go back in six weeks to do another biopsy. The plan this time is to send me home with the Foley to avoid ending back up in the ER due to a clot.

At this stage of my journey-the anxiety, and drama are over. I’ve done sufficient research to feel reasonably confident that I still have a long life ahead of me even if it’s perhaps going to be less convenient than before.

A lot will depend on the biopsy in six weeks-but I’m not going to own an outcome that is six weeks away. I’m going to deal with what I have now. My next appointment will be with the urologist that specializes in the treatment of bladder cancer, I’m confident that we will work out a plan that will give me a high quality of life. I will trust his poison and scalpel and my focus on diet to reduce either the reoccurrence, or the severity of a reoccurrence. I’ve learned that bladder cancer, like skin cancer, has a better than 50% chance of reoccurrence. but I’ve also learned, that with diligence and catching it early that is highly treatable with side effects that are reasonably manageable.

I will come back and clean this post up with an edit later. At the moment I’m still at the hospital, doing this on my iPhone, unable to sleep.

Tomorrow I go home-it’s going to be a great day.

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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9 months 2 weeks ago #56739 by iXanadu
jigStep,

Thanks for the update. Misery loves company. Today is my 3rd full day out of surgery. I put underwear on to see if I can tolerate it - I'll work from home today, and if I tolerate the clothing head to the office tomorrow. ITs good to know that the initial experiences aren't a 100% forecast of future experiences.

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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9 months 2 weeks ago #56737 by JigStep
iXanadu,
Re: “So either no one else has suffered the same symptoms, or it just isn't documented.” My glans was pretty torn up after my first TURB in Aug., maybe because it was a large tumor and the device they use was in place for quite a while. When I got home, the first thing to pass was half a shot glass of partially coagulated blood. For a week or more, it felt like I was opening up a cut every time I urinated. Sounds like you’re coming back to comfort zone quicker than I did. For a few days I availed myself of the opiates prescribed. My second TUR was less extensive time-wise; Doc was in and out in less than 15 min. Even so, when a buddy emailed to ask how I was doing, I responded, “You know you’ve been abused when you have to sit to pee.” I didn’t have as much pain, but I did seem to have some spasming and associated urgency. Fortunately, processes have come back around. Tks for the video.
Best, Stu

7/18 Gross hematuria
8/18 TURBT, papillary urothelial carcinoma, T1 LG
12/18 TURB, benign urothelial mucosa, features consistent with cystitis cystica
9/19 TURBT, HG papillary urothelial carcinoma, noninvasive

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9 months 2 weeks ago #56731 by sara.anne
It is unfortunate that your urologist isn't more "sharing" of information!!! What you are going through is pretty standard....after the TURB they did a wash with mitomycin, which is a chemo agent but is being used here as a wash to insure that no little pieces of cancer re-colonize. The little seaweed sort of thing (I usually think of it as a mushroom) was probably a papillary tumor. You do have to wait for the path report to know what grade it is and whether it has invaded the bladder lining. When that information is available, you and your doctor can decide on a treatment plan.

I do hope that he can take the time to sit down and discuss this with you in some detail. You are correct that the most important thing is the competence of the doctor, but you are going to have a life-time relationship with him so this would be the time to consider making a change IF you feel it is not a good fit.

You are doing all the right things and you will do fine!!

Sara Anne

Sara Anne

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