Hello,
Today my urologist found a "small" tumor in my bladder during a scope appointment.
This has all been a lot to take in. I am a 29 year old male, and this all seems surreal. Before this my only real medical issue was discovery, diagnosis and removal for a large lipoma on right buttox that caused me a lot of nerve pain.
Here's my backstory on all this. In late 2015 I had a couple drops of blood in urine. I was concered, as that had never happened to me before, even with a previous bout with chlamydia.
I went to see a doctor the next day, he said he thought I had a kidney stone, and recommended me to a urologist.
I went on a two week road trip to the coast after that with my (then two year old) daughter and her mom. The blood stopped immediately, it didn't even last a whole day, and it was "only" a couple drops. Never actually saw the urologist as I never fully went through with seeing him.
Didn't have it again for at least six months. Then got little drops of blood at the end of a urination every 1-4 months.
Fast forward to the end of July, I urinated pure, wine colored. I tried to hold out, and I did for about a week. Finally went to Penrose Main ER on August 5th. They did a cat scan and blood work and I came back with a 3.4mm stone in my left distal ureter, and recommend me to my current urologist (ironically a colleague of the one I should have seen in 2015). The scan couldn't fully track my left ureter, however, even though this time the radiologist interpreted it to be a stone. The CT also looked at other parts of my body, including my bladder and said it was "normal and healthy condition".
The urine finally cleared up to clear/straw colored the day after that first ER visit.
I saw the urologist a few days later (as soon as he could get me in). He went over the scans, went through kidney stone talk, went over the flomax and the ibuprofen prescriptions, made an appointment for two weeks ago that would either go over kidney stone prevention, go to OR for removal, or if I wasn't sure if I had passed it, get another CT. He also had me take a CT scan based on my concern of them not being able to fully track my ureter.
Took second CT scan (for some reason he ordered this one with no contrast just like the ER scan). This one found a 4mm calfication in the same location, but because it couldn't properly track my ureter, made the recommendation of a vascular calfication instead.
I went to the St Francis ER a week and a half or so later, because my urine had gone from clear to brown-ish. And some other pain symptoms in the exact area of that ureter. They gave me a strong, inter muscular NSAID shot and pretty much sent me on my way after doing blood work. The blood came back really bad the next day, and I clots bigger then I had ever had.
My urologist, by calling his office with my concerns, ordered a CT urogram with contrast, and I took it the next day. results came back with same 4mm calcification, same spot. This time radiologist interpreted it to be a phlebolith. Mass of appx 1.7x1.5x1.6cm showed up in bladder. First time it had showed up on any three of the CT scans (based on the radiologist results - still confused about those details on that considering the first scan said urinary bladder was normal).
Then, two nights later I couldn't urinate but a few drops at a time and my bladder felt beyond full and horribly uncomfortable because of this. Went to the ER at Penrose main because of this and they took me immediately, did a quick ultrasound of bladder, said good thing I came in because I had over 800ml of urine in bladder. Tried to fit normal cath, couldn't, got their workhorse / biker looking nurse who claimed to do all the hard jobs / dirty jobs (my ER doctor backed him up on this), and he was able to get a foley cath in me farily easily (for my first time I suppose for sure).
Later that night they did a comprehensive ultrasound of my bladder, my girlfriend thought she saw a mass in there. Keep in mind I had been having massive blood clots up to 6" long. ER doctor came back in and said they thought the mass was the blood clots, and that if I had any more trouble urinating to come in, otherwise wait for kidney stone surgery.
Went back to ER the next day, because the third scan had said the mass was right below my right ureter, in the path of its opening. They did another ultrasound, this time mainly of my kidneys, and of course blood work, and again my kidneys showed no hydronephrosis or any of the tell tale backflow / kidney signs that stones in the ureter almost usually show. Told to just go to my surgery on Sept 12 that I had by now scheduled with my Urologist, for the stone removal.
By what I considered a miracle at the time, my urologist office called and said after getting back from his weekend and seeing my two ER visits he had made time for me to come later this week to get a scope done on my bladder.
That scope happened this morning. He goes in, and immediately finds the mass, I see it and him. He says it's a tumor, and says it's cancerous. Later on in my relatively brief appointment with him he says it has a 98% chance of being cancerous. And that also I'm his new record for youngest patient with this issue. He said the youngest before was 31 years old. It's surreal to me at this point. I mean I feel good, I still feel young, I have plenty of energy and what not.
He then adds on tumor removal with TURBT to my ureter stone surgery, which is scheduled for Tuesday the 12th of this month. Has me sign a new surgery sheet for the surgical add on, and sends me on my way while having his scheduler briefly go over some surgery information (like not to take aspirin or ibuprofen or the like). At this point he still thinks I have a stone in my ureter, too, and goes over that a bit during this appointment as well, and says he will pursue it still in the surgery.
I don't know if this is early on to be posting here, but he did say I have a cancerous tumor in bladder and kept bringing up bladder cancer, so I can't help but feel I was given a bladder cancer diagnosis.
What I am confused on is
(1 Why did the first cat scan say "bladder appears healthy and normal"?
2) Why did the ER doctors / US Tech say that the mass was likely a result of a blood clot from the massive blood clots I was passing through my bloody urine?
3) Is it too early to say it's a cancerous tumor, or is he able to tell based on site? It did look gnarly, like a bunch of fuzzy red/pink blood cells linked together. Again, he said it's a 98% chance it's cancerous.
4) Do cancerous bladder tumors move around in the bladder? Because it was in a different spot when my gf saw it on the ultrasound in the ER the second to last visit. It was in a different spot, to my knowledge, in the third CT scan (up against right ureter opening). And it seemed to be closer to the middle of the bladder from my view, when I saw it with the urologist this morning.
If anyone with insight or experience could chime in. I feel like I am at considerable peace CONSIDERING this diagnosis, but I am still scared. Not only for myself, but also for my daughter and my loved ones. My mom took this so gracefully when I told her later today, as she is someone I confide in, in addition to my gf. I haven't really told anyone else, and don't want to right now.
I am in shock and scared, and lost of answers and insight. And even more so, this all still feels surreal. Please help.