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Urologist Diagnosed me with Bladder Cancer Today - 29 Year Old Male

3 years 2 weeks ago #54012 by exsequor
Had the TURBT yesterday afternoon.

Feel as though I was kicked by a mule. I've got two stents, one in each ureter and a foley cath. Cath is now scheduled to come out Monday. Pathology is going to scheduled for two weeks out. And stent removal is to be scheduled for a month from now.

This all started because I had heavy blood in my urine, finally caved and went to ER over a month ago, and was diagnosed with kidney stone in left ureter.

Here is what the urologist told my gf while I was still knocked out and in post op recovery, as summarized by my wonderful gf:

"He said you have got to be the luckiest man alive because there was no kidney stone and because you went in with the pain on the left side if you never went in they would have never seen the tumor and it would have killed you because the tumor was the size of the urologists thumb. And it's for not for sure cancerous in two weeks we will know what kind of tumor it is. You have two stints in you. One of both side. One on the left from them trying to see if there was a stone and had to be widened and one on the right from where the tumor was. I believe that's correct, (don't quote me on that). He said when he first saw the tumor he figured that can't be because you're not smoking 10 packs a day and you're still really young and it's really just bad luck. In two weeks we will know results about the tumor. And in about 4 weeks the stints will come out. On Monday the catheter will be removed"


So now I am happy that this step in done, but even more concerned then ever about how I feel (went from feeling very good pre surgery to feeling like I got kicked by a mule post-surgery). Also concerned that he needed a stent because the tumor was attached around right ureter opening, and also concerned that he called the tumor large because it was the size of his thumb.

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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3 years 2 weeks ago #53997 by exsequor
So some worry and anxiety has set in, but I am still doing OK.

I am wondering now if my Urologist, who has been pretty good, should be the one to do this TURBT?

I mean it's scheduled for tomorrow and I want it done and I want to know the results, but at the same time, not all urologists are created equal, right?
If I had known this stone bout was going to involve BC as well, I wouldn't have chosen him, I don't think?
I would have gone up to Denver to UCHealth and gone with them. They are a very top rated hospital.

However, hindsight is always 20/20 right? And the Penrose/Centura hopsitals here in the springs are still very good. (Penrose Main & St. Francis).

My surgery is tomorrow at 3:30pm at St. Francis. Should I worry about my urologist who graduated from medical school in 2007 being able to do this just fine? Does a more skilled or highly experienced urologist have a better chance of removing this (and removing *all* of it, then a urologist with perhaps less experience)?

The biggest thing giving me hope now, besides the fact that I still feel relatively good even with the onset of slight anxiety is that when I saw this thing on the scope it did look finger like, and fuzzy and looked like it was in the center of the bladder, or at least growing towards the center. I know off the bat, that is a good sign, but aside from that I just must wait for the pathology report, which is going to make me doubly anxious waiting for that.

Also, does the fact my urologist said I will have a catheter in for 1-3 days after the procedure mean they're doing anything they don't always / normally do?

If anyone can help ease my mind for tomorrow and the upcoming days while I wait for further information and pathology report on this would be great!

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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3 years 2 weeks ago - 3 years 2 weeks ago #53996 by exsequor
Thanks! That's for sure. Wish I didn't have to be here at all, no doubt.

This has been a long, tiring journey. Especially with maintaining a normal life through all this. I run and own two businesses in the stone and tile industry. I work them, and do sales, and my crew and family has helped me get by during all the appointments, and some of the down time I've also had to force on myself for R&R.

All in all I am very active, and consider myself reasonably healthy. I started smoking cigarettes at 15, basically daily by 17, and have quit over 50 times since. My longest attempt was 12 months. This time I've been (near) cigarette free for the past 2 months.

I feel good for the most part, and I do attribute most of the pains that I do have to the fact that I quit prescribed xanax of appx. 5 years of use, "cold turkey" 2 months ago.

So going through the quitting xanax, on top of this stone, and now cancer thing is crazy. But I still have fun. I don't drink. We went to the casinos last night and had a blast. A full day with my daughter that day (yesterday), test drove a awesome 2017 f350 that was very customized at the dealership.

Trying my best to not let this affect me, and the better I feel, the more active I am, the better I eat; they are all tied together, and I know this. But I am no where near perfect at this. I struggle with this, as we all do.

I'm starting to break out of the surreal-ness of all this. I've gone through some small bouts of anger since Friday. Some small bouts of anxiety. Some small bouts of "gross" fear. Some small bouts of "half" denial.


I am anxious but looking forward to Tuesday and finding out how aggressive or not aggressive this thing is. It's probably jumping the gun by a long shot, but losing my bladder isn't the end of the world to me. I want to do everything I can to prevent that, but as long as I have the relative same sexual function as I do now, I could consider it doable. If anyone has insight on that let me know.

Otherwise, my biggest goal is to beat this, survive this, and to keep checked up on this. The scoping every 3 months is a major inconvenience. But I know I can do it, and I don't fear them very much (I've only had the one now).

I just want to move on past this unknown, and move into getting rid of this. That's what I'm most anxious for.

Much love to you all.

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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3 years 2 weeks ago - 3 years 2 weeks ago #53991 by Alan
Welcome! Sorry you have had a reason to be here. You have had a long journey to this point with stones etc! The one thing I have learned is wait until the TURB is done with the pathology. You really don't know much until then even though it probably is bladder cancer per your doctor. Keep this in mind. This is treatable and beatable. Keep posting and let the people on this board what is found and we will be around with "been there and done that". One day at a time!

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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3 years 2 weeks ago - 3 years 2 weeks ago #53989 by exsequor
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.

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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